DIARIES => Post op diaries (100-300 posts) => Topic started by: kcknee on July 25, 2014, 11:05:11 PM

Title: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on July 25, 2014, 11:05:11 PM
I had my previous diary deleted because I had lost hope in saving my leg and it was getting depressing to document. Within the past two weeks I may see a possible ending in sight. Here is a “brief” summary of the past few years:

Original Injury up to ACLr surgery
I injured my knee skiing on New Year's Eve 2008. The MRI was not clear, but the OS (OS#0) said no new tears, chronic ACL tear, bone bruise and swelling. It was "at the very least a bad sprain." He told me to go to PT with no follow-up. PT helped, but my knee wasn't loosening up or staying loose. I could extend my leg while it was flat on the table, but couldn't stand on it straight while on both legs (I could stand on one leg with it straight) or extend it straight when walking. My knee would remain bent. I could work stretching it for an hour have it perfectly straight even when standing, and then sometime within a few minutes to a few hours it would get stuck bent again.

The next OS (OS#1) was able to figure out the problem. My ACL was stuck in the joint forming a "pseudo-cyclops lesion." The ACL would get stretched out by PT and I stretching it, but then would contract again and my knee would get stuck bent again. Because my knee was still hot and inflamed from having the ACL in the joint and because the 2nd OS felt that I may be able to live w/o an ACL, he decided it was best to remove the torn ACL first and if necessary do a second operation to replace it. Immediately after the first surgery 6/1/09 my knee was looser, but was unstable. I rehabbed all summer with lots of balancing exercises, but even though my leg muscles became very strong, if I stepped sideways or stood relaxing my leg muscles, my knee would give out.  OS#2 and I decided I needed a new ACL and I had that surgery 8/31/09
Title: Re: ACL replacemen leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on July 25, 2014, 11:10:13 PM
Start of compartment syndrome (CS) and arthrofibrosis (AF) - OS#1 and OS#2
The original CS was in September 2009 several weeks after my ACLr surgery. I had teeth- chattering fevers the week before it started, but had no pain in knee at that time. A few days after fevers stopped I awoke to a grapefruit size swelling over my knee and a lot of pain in my knee. I tried to contact my OS all that weekend, but he had lost his pager and had no answering service. By the time I could see him that Monday, the swelling had dumped into my leg and my lower leg had doubled in size. I continued to take the antibiotics my family dr. had prescribed and was given Lodine to try to bring swelling down. Despite extreme swelling, I progressed through the ACL rehab and by early November was jumping and starting to jog on treadmill. I then started getting tingling and numbness from knee down when my leg would swell and I was sent for MRI which showed scarring on anterior compartment so I was told I needed a fasciotomy. About 4 inches of the compartment was released along with my peroneal nerve that was encased in scar tissue in 12/21/09. The surgeon was shocked at the amount of scar tissue he found.

When I was a few weeks out of that surgery, I started getting stiffness in my knee and losing extension. My PT would get everything in my knee to stretch out so I could extend fully and then after I did any strengthening or tried cardio it was like a rubber band and my knee would contract bent and my PT would have to put all his weight on it to push it flat again, usually with a clunk. My OS (OS#1) did not believe me and cancelled PT and told me to go to gym.  I ended up seeing OS#2 because he had training in arthrofibrosis which I was becoming afraid that I had. He did diagnose me with arthrofibrosis and after trying steroid injections and dynasplint, did an anterior interval release in 8/26/10. He removed sheets of scar tissue from around patella tendon and quad tendon. I had started feeling slight symptoms of CS that Spring, but it was after the August surgery when I tried rehabbing, that the cardio and strength training brought the CS back fully and I was first sent to Sports Med Doc (SMD) for pressure testing. The pressure was high so I had another fasciotomy, this time of all 4 compartments in December 2010. I was upset to find after the surgery that OS#2 had been really concerned about limiting scarring to the extent that he never opened my leg up enough to see all the scar tissue that I knew was in there from OS#1’s shocked description.  I was not too surprised that once I had recovered from that surgery and tried to increase activity that the CS feelings came back quickly. Back to SMD for more testing and then another fasciotomy in 5/5/11 after which he expressed horror that he couldn't find his last fascia incisions that they had all scarred over. This time OS#2 had opened it more and was shocked at the amount of scar tissue that he found.

I started losing my knee extension again during Spring 2011 and was dependent on my PT to keep my knee stretched out and functional. At that time I had family doctor order blood work for every rheumatic, inflammatory, infectious or other conditions that he could think of that could be causing the scarring in my leg. All tests were negative. I then looked at what externally had changed and realized I had started taking metoprolol, a beta blocker, 2 weeks before the ACL surgery for high blood pressure. There were a lot of hits on the Internet for scientific research of beta blockers and fibrosis (none in knee, but kidneys, lungs hands, privates etc.)With approval of my OS, I switched blood pressure meds.  Whether a placebo effect or real, in about 6 weeks (mid October) I noticed that my knee was looser and I could suddenly walk up stairs again. PT no longer needed to release kneecap or clunk it flat. OS was thrilled and told me to stay away from that medicine.

Unfortunately, the returning CS didn't lessen. OS#2 first decided I needed the open fasciotomy, and then sent me for a second opinion, OS#4. OS#4 told him that a fasciectomy and then immediately closure would work. He then rejected this opinion and went back to his original plan of the open fasciotomy, but, on the day he called me in to schedule the surgery sent me to the next consult - this time with his mentor in at NYU, OS#3. This consult had originally told him prior to meeting with me, that he was thinking fasciectomy, but by the end of my appointment was recommending the open fasciotomy with the possibility of closing the medial incisions immediately. OS#2 after speaking again to OS#3 said that the skin graft or putting something in my leg to prevent more scarring could lead to more scarring and be too disfiguring; a fasciectomy or leaving the incisions open for a few days and then suturing may not make any difference because when he opens the compartments my muscles pop out and the open ends of the fascia are about 2.5 centimeters apart.  Between August and October I had an ultrasound venous Doppler test, had x-rays of my fibula, been given medication for nerve damage, had a vascular consult, had popliteal artery entrapment testing, had a neurological consult and went through EMG/NCS testing. OS#2 then instructed me to continue care with OS#3.

Title: Re: ACL replacement leadin to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on July 25, 2014, 11:14:02 PM
More fasciotomies with OS#3
OS#3 had me repeat many tests: EMG/NCS exertional MRI, Stryker pressure testing which again showed not a nerve problem, CS and high compartment pressures.  He did a 4 compartment fasciectomy 12/23/11 with much longer incisions and crescent shaped pieces of fascia removed. Immediately after the surgery he told me that it looked like no one had ever touched the deep compartment and that 2 muscles didn’t look great. He also was shocked at the amount of scar tissue and said he had never seen so much scar tissue. He stressed how aggressive he had been in removing scar tissue and that the compartments were very scarred down. Soon after the surgery I had a giant purple hematoma and many seroma pockets that developed with fluid that could be swished around. My leg was really tight and compression by pockets on ankle causing foot numbness. The purple hematoma eventually bled out two holes that had been giant blood blisters after about a month (1/21/12). For the first about 8 weeks or so, functionally it was great and I even walked around Disney Parks. In early March that these fluid pockets started to really grow and cause a lot of pain as they pressed on nerves and other tissues. On 3/4/12 leg tired dorsiflexing and stopped responding when asked to step over obstacles outdoors.  On 3/7/12 – positive CS pressure tests A = 27mmHg, L = 18mmHg. The two open holes kept oozing until June when a plastic surgeon in at NYU debrided them. I couldn't take the constant medial nerve pain and intense tibial bone pain (periosteal elevation on x-rays in 2 spots of pain, but MRI clear for any bone infection) any longer that summer and started seeing a chiropractor to try to break up the now partially fibrous fluid pockets. He was shocked at how lumpy my leg was. After many painful Graston sessions he was able to brutally break the pockets which relieved a lot of pain. On 9/5/12 chiro did Graston on fibular head causing extreme pain. 9/25/12 another MRI of tibia at NYU– clear but extensor digitorum longus and peroneal muscles are all shown in my MRI report as damaged with possible denervation and scar tissue encasing the left superficial peroneal nerve at the level of the proximal tibiofibular joint, unchanged.

10/16/12 Told OS#3 that I think that the encased nerve and scar tissue in that area are causing the nerve pains (and perceived bone pain) which become worse and include foot drop when muscles swell and nerves are more compressed or inflamed. 11/7/12 – Met with Foot Surgeon (FS), trained at Dellon Institute. He said I had classic common peroneal nerve entrapment noted in the denervation of muscles and my symptoms. 12/7/12 – decompression surgery of inflamed peroneal nerve. Foot drop stopped.

1/22/13 – Suspected pockets in leg that refill could be morel-lavalle lesions. OS#2 said that essentially with the fasciectomy a morel-lavalee lesion had been created in my leg (usually that type of lesion found in hip) – OS#3 agreed. 3/27/13 – ultrasound by SMD who says my blood vessel on the bad leg is dilated in the area that it hurts along with numerous fluid collections. He printed out an article on chronic venous compartment syndrome. Saw OS#3 on 5/1/13 – suggested limited fasciotomies to release fluid pockets around ankle.6/3/13 fasciotomy medial compartment.7/29/13 – fasciotomy lateral compartments, sheet of scar tissue removed and superficial peroneal nerve released from scar tissue.

Title: Re: ACL replacement leading to CS AF and possible ankle reconstruction or fusion
Post by: kcknee on July 25, 2014, 11:18:19 PM
Start of new problem
8/22/13 PT told me I apparently am having a problem with my foot rotating out. (I actually had a similar problem after the fasciotomy 12/11.) 9/1/13 - One of my brother's out of control kids "accidentally" kicked me twice in the leg right over where the nerve was just released - a lot of nerve pain since. I have a swollen hard bump on the front of my ankle. 9/2/13 - foot is ice cold at night while ankle and above is hot. Foot is partially numb and tingling 9/8/13 –2 raised whitish bands appearing across my leg just above my ankle where the tightness is the worst. I would guess that the top is a scar tissue band (It's about the level where he had said he had released a scar tissue band) and the bottom could be the fascia where it stopped being opened (he said he stopped at level of foot tendons. Told that the fluid pocket that I had were caused by the fasciotomy on 12/2011- to cut open the fascia retractors were used to stretch the fascia, skin and tissue layers out and away from the muscle. This formed a pocket at the bottom of the incision where the fluid collected. A band of scar tissue was removed during the June fasciotomy which had grown at the bottom of where the fluid collected.

9/13/13 - PT increased the intensity of the ultrasound causing a deep incredibly painful shrill aching pain in bone and told after diagnostic ultrasound with SMD that large hard bump that formed was Tib Ant Tenosynovitis. 9/19/13 – OS felt the band in my foot and agreed the scar tissue band was at the bottom of the fasciotomy incision (resulting pocket) that he had made. 9/21/13 - Leg is swollen and sore. Bands and bump still there. Foot hurts a lot. The anterior tibialis muscle hurts a lot in the arch of my foot. Stiff to pull foot up and painful in arch to point foot down.  9/23/13 - Started new chiro for ART and Graston. 9/27/13 -  I have had issues with tightness, cramping and muscle spasms in my outer muscle (ant tib). If I flex or dorsiflex my foot fully, I immediately send my muscle into intense spasms.The muscle tightness and cramping felt like the pain from CS 10/2/13 - the front of my foot is not lifting as high and when I walk on uneven ground in the backyard, my foot kind of shuffles on the ground instead of clearing it. I am not tripping over my toes, more the ball of my foot. The bump from my ant tib tendon is noticeably smaller and softer. I still have soreness in my ant tib muscle but the spasms have stopped.  10/3/13 – woke up with a jolt of pain in ankle and the feeling of popping bubbles in my ankle. I had been sleeping on stomach with feet out flat behind me. Tendon bump has not swelled up much more, but have numbness around ankle into foot and pain/numbness/stiffness feeling in ant tib muscle. 10/4/13 - My foot drops forward now at rest. I've had foot drop before and it was always painless and for me occurred after use when swelling would compress the nerve. I would tell the muscle to move and nothing would happen. This feels more like an injury. There is pain in the ant tib muscle and into the arch of my foot. The front of my ankle hurts. I feel more soreness and pulling at arch when my foot drops forward at rest. Before it was a functional foot drop, when I called on the muscle it just didn't work, now I am calling on no muscles at rest with my legs out straight and supported and my foot is dropping farther forward than my good foot, almost in straight alignment with my leg. I can then force my foot to dorsiflex up but then when I relax muscles it falls forward. Chiro said that the muscle in the arch of my foot is spasming and is strongly contracting causing my foot to drop at rest and start doing the armadillo roll over my arch and my "calf" muscle is extremely hard and tight. In his opinion, there was a nerve somewhere being constricted that is causing the arch of my foot to contract.  My ant tib tendon is now constantly a hard tense cord that sticks out at the front of my shin, especially when I pull my foot up On 11/6/13, Foot surgeon diagnosed Tarsal Tunnel and CS in the medial Compartment of my foot. Compartment pressures measured: Anterior = 40(starting 115) Lateral = 48(starting 115)Deep posterior and Superficial Post Compartments were fine at 16 & 7 medial compartment in the foot tested very high at 41 (starting 125). EMG/NCS normal. 12/13/13 – Tarsal Tunnel release, fasciotomy medial foot and deep posterior; Release of nerves in ankle and foot with FS simple straw drain left in.  FS’s surgical notes indicate white lymphatic fluid and scar tissue. 2/3/14 – fasciotomy anterior and lateral compartments. OS#3 said he found a lot of scar tissue adhesions and had released under skin at ends of incisions with his fingers going over the knee and ankle, superficial nerve released again. Bulb drain left in for 3 days

2/25/14 started lymphedema PT for swelling. Told not lymphedema but could wrap for swelling. 4/16/14 – Foot started arching over at rest again, deep intense ache in arch. 4/22/14 pressures measured A = 27, L = 15, M Foot = 53. 4/23/14 – saw OS#3 with information about Botox for compartment syndrome treatment by Dr. McGinley in Wyoming – goes to NYU often. FS wanted to do fasciotomy of foot left open with drain on May 2nd. 4/28/14 – diagnostic nerve blocks in ankle but not able to numb foot. 4/30 compartment testing: S= 16 but the DP = 40. Foot surgery cancelled. 6/12/14 – realized I was using the testing method for the Silfverskiold test on my leg all the time and my gastrocnemius muscle involved in foot contracture. If my leg is out straight, the contraction pull through my arch and folding over of my foot is very strong and painful. If I bend my knee the contracting pull lessens a lot. My foot is contracted over though if I sit with legs off side of table with knees bent.

Title: Re: ACL replacement leading to CS AF and possible ankle reconstruction or fusion
Post by: kcknee on July 25, 2014, 11:28:17 PM
A possible new diagnosis
7/18/14 – Finally got a copy of the EMG report that started all the nonsense started last Fall and then again this Spring that I had dystonia in my leg muscles and that was causing the CS. (I had a pediatric stroke at age 4 from probable meningitis, that had paralyzed left side of body but I was young enough that brain remapped giving me full strength, but a tremor when focusing on left side. I have never had dystonia ever, but OS#3 and FS#1 started up that it must be dystonia from stroke when they were frustrated.) In large print it states:  This is a NORMAL EMG and Nerve Conduction Study. I had been told that the neurologist had said I had dystonia which obviously was not true, every test result reported was normal. I am especially not happy with way FS treated me.
7/22/14 – Second opinion with OS#4. He said I have bowstringing of my ant tib tendon - it's no longer held to the bone as a result of the fasciotomies. He said the muscles at the back of my leg are over powering the ant tib, which is under constant stress, causes the high CS pressure in ant tib, medial foot and posterior and superficial compartments. He offered little hope and felt leg was now a disaster. He said I should get fitted for an AFO to get pressure off the ant tib and maybe get the compartment pressures down. If I can get used to the AFO I should use as long as possible before finally getting my ankle fused. He felt that would be a definite ending, but I should hold off as long as possible.

I knew my tendon was strained and very ropelike and pronounced and believed that all my doctors were seeing the same things that I was, but apparently my OS, FS, SMD, a chiro, plastic surgeon all missed that the tendon was bowstringing. Both of my surgeons operated on my leg during this time. My leg was very filled with fluid until recently when I started using a vibrational foot massager that apparently got my leg circulation restarted, but the tendon could always be felt since the Fall.

I have appointment scheduled for August 7th in at NYU with a foot surgeon (FS#2) who specializes in reconstructive surgery. I will see if he agrees with diagnosis and what treatment he can offer. Have some hope that retinaculum might be able to be reconstructed.  An OS on HealthTap said “Yes, it can be repaired, replaced, or reconstructed.” And I found an article where “the superior limb of the inferior extensor retinaculum was then reconstructed with a segment of fascia lata harvested from the thigh.”

When I went before the recent OS#4 appointment to get my surgical notes from the ACL reconstruction from OS#1, his assistant stared at my leg and then said “When we screw up, we sure do screw up good.”

Here is a picture from a few weeks ago of what I am being told is my bowstringing ant tib tendon.

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on July 30, 2014, 07:33:19 PM
I'm holding off on getting the AFO prescription filled until after I have a chance to talk with the NYU FS and maybe another reconstructive surgeon at HSS and/or NY Presbyterian Hospital.

I went with family to Bronx Zoo on Sunday. This is a large zoo so we were walking for about 5 hours. I wore the foot portion of the lymphedema compression brace I had bought when I tried bandaging for fluid control last Spring. It provides compression through high ankle. It held my ant tib tendon in noticeably when I tightened it. I took it off for the last hour and I was limping a lot more and was in a lot more pain in tendon and muscle compartments.  Without the brace on, my Ant tib popped out immediately again. Maybe there is a smaller straplike brace similar to the patellar tendon straps or Achilles straps that could be fitted to the front of my ankle so I wouldn't need a full AFO to freeze foot movements. I'll have to ask to make sure compression at front of leg couldn't hurt tendon. It sure would beat having ankle fused.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on August 01, 2014, 02:59:04 AM
The big question I somehow have to figure out is:

Did the CS return last Fall and again this Spring because
A)although last Summer fasciotomy had finally opened the fascia enough, the constant stress of the bowstringing injury of the ant tib tendon caused CS level pressure to return to the stressed compartments
B)the main cause hasn't been treated yet and now along with the CS I also have a tendon bowstringing injury?

In favor of option A
1)my leg felt great with no CS symptoms last Fall up until my foot started arching over.
2)last weekend at the zoo I was able to walk pretty well when tendon was compressed in.
3)even if compartments scarred over,could they have finally been opened enough and sealed with increased volume so that w/o the added stress I wouldn't have CS?
4)This would fit in all the incidences from last Fall.
5)although bowstringing of tendon can be normal state for some, mine has felt like injury since it started last Fall.

In favor of option B
1)usually within 2 months of every fasciotomy I start to feel the CS returning.
2)Is it too much of a coincidence to have an injury that would  again cause compartment syndrome in my leg?
3)after the February fasciotomy OS released had to release same nerve from scar tissue as he had in late July and said he could see more scar tissue forming in fluid. Compartments had resealed.
4)Although it would fit in all the incidences from last Fall, does it explain the CS also or just the foot arching?
5)it was kindly pointed out to me that for some who never had surgery or trauma (including one Texas OS) the normal state of the ant tib tendon is bowstringing and causes no deficits or problems.

Before I talked to OS#4. I had been planning to see the NYU FS and then convincing husband to let me travel to Texas to see if I could possibly have a rotational problem that was causing the CS to keep returning. I'm kind of lost on what I should do next. Should I try to get the retinaculum in my ankle reconstructed and see if that stops CS or pursue finding out if there is a larger reason the CS keeps returning to my leg?

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Lottiefox on August 07, 2014, 10:40:55 AM

I am going to read this through properly when I have some time and try and formulate a response. I am excited that you may have found an avenue that could signal a return to function for this leg and foot. I am no medic but certainly that picture indicates a bowing...I would certainly want to be very sure that an ankle fusion was a great plan before going down that road as it isn't anything they can undo. Having said that, I have been doing personal training with a client who has an ankle fusion due to complications from an ankle break and she does very well. But, her case is way less lengthy and no complications by CS at all.

I wish you could get a resolution. I can only imagine the frustrations you feel, however calm and measured these posts always are. As I have said before - it isn't great to be "special" after surgery.

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on August 07, 2014, 04:36:51 PM
Hi Kristin,

Ditto with Lottie and will also read carefully 1st before responding back again properly, from what you posted on your post op diary and on mine have finally made the breakthrough you deserve  :)

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on August 07, 2014, 06:35:13 PM
It's crazy to read all of this summarized for the new diary, even having followed along as so much of it unfolded the first time around. Even though questions remain and the final outcome isn't clear, I'm very happy that you have a new diagnosis (and one that sounds like it makes sense) and some options to explore. I know things were not looking promising when you closed off your old diary, and it's great that some hope at least has been restored.

As for the two choices - retinaculum reconstruction vs. pursuing a possible wider cause for the CS - it's really hard to say which is the better option. Certainly it seems that the bowstringing, while normal for some, manifests as a problematic injury scenario for you. And presumably with the history of problems anything that stresses the leg could contribute to the redevelopment of CS. But you've also been through this so many times that it also makes sense to ensure that there isn't something bigger contributing to the recurrent CS.

Regardless of what you decide to do next, I so hope that this is the beginning of a proper resolution. You are more than overdue for relief.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on August 07, 2014, 10:06:44 PM
Thanks Lottie, Nick and Snowy for the support, but unfortunately like every other time so far, things are not working out. I saw the NYU foot surgeon today. Unfortunately it became clear within the first minute that he had spoken a lot with my OS. He even told me they talked.

He could not be shaken from saying I needed an AFO but only wants me to wear it "some times" and thinks that I should never have my ankle fused. Not clear how a sometime AFO use could either atrophy muscles to increase leg space to hold off CS or my foot arching. When I asked about reconstruction he said he had never done it and didn't know if it would help me or what would be used. I said I sent OS a case and he said he had seen it and named the fascia replacement used. He recognized my tendon was bowstringing, but told me it wasn't a problem because I can still use the muscles. Says problem is back of leg muscles overpowering. 

A few times I got him talking about something that could help, but then it was as if he caught himself being helpful and immediately started talking about AFO again. If I walked in with a bone sticking out or a rabid platypus attached to my leg, I bet he still would not have been swayed from his AFO will solve everything nonsense. If he had actually examined my leg or talked to me before he told me I needed the AFO, it would have been different. I wish I never told OS what OS#4 said - I wonder what would have happened in meeting then.

Unfortunately I was so frustrated with the foot surgeon already having decided on my treatment before he ever saw my ankle, although I'm not clear on what exactly he was treating me for, that I forgot to ask him about any type of "patella tendon strap" that could be worn at the front of my ankle. After the zoo I was in a lot of pain and slept on Percocet, but it was less than the cramping pain I have in my muscles tonight and I did a lot more that day.

I left a copy of a timeline of past diary excerpts from when I first got the bump on my ankle through OS#4. I hope he will read it. He asked to keep it when I looked at it to give him dates, so maybe he will read it. I was hoping he would have ordered mri of ankle, but I guess he doesn't believe the bowstringing hurts.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on August 09, 2014, 06:34:34 PM
Damn. :( Are there any options for alternate foot surgeons who might be a bit more open-minded?

Will you try the AFO while you figure out next steps? At least it sounds like OS #4 is still on board with helping you find a solution.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on August 11, 2014, 04:34:15 PM
I just scheduled appointments with 2 different reconstructive foot surgeons - one for this Wednesday in at Columbia Presbyterian and another for 9/8 in at Hospital for Special Surgeries.  If the first surgeon agrees to help figure out if bowstringing is causing my problems and I am comfortable with him, I will cancel the 2nd appointment. Both take my insurance.

I wrote OS on Friday and requested his help in ordering an MRI of my ankle to see what is happening, but not surprisingly, there has been no response. After OS#4 told me that he thought the fasciotomies caused bowstringing and current problems, I was still looking at this as let's figure out what happened, what can be fixed and move on. Not trying to blame anyone, but accepting complications happen and us unlucky few seem to get more than our share. Since that appointment with the NYU foot surgeon, I have been really angry at him. It just feels like he is much more concerned with covering his own butt than helping me.

I'm holding off on AFO until I have a better understanding of what problem is, and what is and is not fixable.

8/13 - Not a good appointment today with the first new foot surgeon. He started with my surgical history and was shaking his head, muttering and backing out of the room before he even got to what the problem I was there for was. Feels too many surgeries and too complicated for him to get involved. Could offer PT or brace but not sure if either could help at all. Opposed to ankle fusion and not sure if replacing retinaculum would then lead to 2 surgeries if was then too tight and had to be removed.

SportsMedDoc says he will give me a prescription for an MRI, so I can at least know what has happened in my ankle last Fall. Even if there is nothing that can be done to fix anything, I need to know before I will ever be able to accept having to wear an AFO.  Hopefully I can get the MRI done next week.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on August 14, 2014, 06:14:44 AM
I'm glad SportsMedDoc is still willing to help. So frustrating about the foot surgeon. I can understand why a  new OS would be nervous about taking on a case with such a complex surgical history, but at the same time the medical system should be providing you with some support. I hope the HSS will be able to offer a better option.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on August 15, 2014, 07:22:05 PM
I met with SportsMedDoc today and he is writing a prescription for 3T MRI of my ankle. I should have approval next week. I will have something real to bring to next foot surgeon and not just a theory of what might have happened.

Unfortunately, I had to explain to him what tendon bowstringing was and go through a medical atlas book with him to explain where OS#4 felt that supportive fascia is now missing. He was the one who did the ultrasound for me to diagnose the tenosynovitis in my ant tib tendon after the ultrasound burn and also a few weeks later when I felt the sharp popping pain at front of ankle and I was afraid my ant tib tendon had torn. Unfortunately, since he didn't realize that the fascia should have been there, he wasn't looking for it and he didn't appreciate either time that it might have been damaged.

**Strange not so good symptoms tonight. First, before I left SMD's office, they used ace bandages and super tightly wrapped around my bowstringing ant tib tendon just above my ankle. (I had mentioned that foot compression brace had helped) I kept bandages on for an hour and then removed because it was way too tight. Shortly after that I started having pain in my knee and in the muscles above my knee. My knee has bucked twice. That hasn't happened in years. I also have incredibly painful CS pressure pain  in anterior compartment through my arch, but that is not strange or surprising.

8/17- leg has buckled a few more times since Friday. Mostly when I first stand up. On Friday at my SMD appointment, we were commenting that only ant tib was bowstringing and not other tendons that go under superior extensor retinaculum. Soon after I took off the tight bandage on Friday, I could feel other tendons sticking out on the front lateral side. It had to be scar tissue covering them because in that area before it was squishy/crunchy feeling. It wasn't bothering me before, so I left it alone. I assume it is the new stress on these muscles causing the buckling. When I now plantarflex ankle while foot pointed in and then bring it up quickly I have what I believe are other tendons that now sublux and snap over bones at side of foot. Pain in muscles under peroneal nerve release scars.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on August 21, 2014, 08:49:20 PM
Last night I started trying to figure out what had been/should have been released when the OS continued fasciotomy into my ankle and foot. After a long night of reading online fasciotomy surgical instruction, I still was unclear if retinaculum in ankle had been partially released in spots, completely incised through or actually partially removed. None of the many surgical manual/articles I found stated that over 50% of retinaculum should ever be released. After last Summer's Fasciotomy into my ankle. the retinaculum did hold for 2 months during which I suffered an ultrasound burn to area, ART therapy and then felt remaining retinaculum break away.

According to the AAOS (American Association of Orthopaedic Surgeons)
“Fasciotomy is not just a hole in the skin. It’s not a completely benign operation, particularly if you stray too high or too low and damage a nerve, or if you damage the extensor retinaculum and lose the mechanical advantage of the anterior and lateral compartments.”

Mann's Surgery of the Foot and Ankle (pg 674 section on Deep Peroneal Nerve Release)
"Care is taken to release only a portion of the reticulum ligament, just in the area of compression. Preferably, only half, rather than the entire retinacular ligament, should be released to avoid bowstringing of the tendons. If more of the retinaculum needs to be erased, it should be cut in a Z fashion to facilitate closure in a lengthened position."

I emailed OS early this morning just before 7am and went back and forth with emails with him for the next hour. I asked him if retinaculum was partially released, incised or partially removed. He indicated the procedure calls for it to be released fully. He replied when asked, that a Z cut to lengthen retinaculum and reattachment in lengthened form would still cause to much compression even if length augmented with fascia lata from thigh. I asked if would work if combined with a release/ lengthening of the gastroc tendon in the back of my leg to balance the ant tib tendon that is now lengthened due to bowstringing and he started getting flaky. Says retinaculum reconstruction will not work and feels I should try botox in gastroc. I asked if I tried Botox and it worked would he consider lengthening gastroc. Said no that it would further weaken leg. No response when i said that his foot surgeon is now telling me to place leg in plastic brace for life which will atrophy muscles w/o a chance for fixing anything. When I said that current state is causing CS in foot, anterior and deep compartments, so not a benign condition I am in now, he said he was not sure he agreed with cause. He brought up the pediatric stroke causing gastroc overpull and i reminded him it was over 40 years ago, never happened before, no dystonia in his neurologist's testing. I sent timeline of bowstringing of tendon and conversation ended.

I'll see what MRI report from this Friday will show. It is bizarre that so many of my requests for help from OS go unanswered, but he will debate surgical procedures with me. He had never responded to my request for MRI.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on August 26, 2014, 08:38:15 PM
I have the ankle MRI report back, but unfortunately it doesn't read any deeper than I could tell from looking at the scans myself this weekend (bright white tendons = bad, tendon sticking out = bowing). Good news is no other damage seen from PT ultrasound burn. Not many details. No mention of extensor retinaculum or if any of it is still present. I see HSS surgeon 9/8 and see Sports Med Doc tomorrow to go over scans. I sent report to OS, but do not expect response.

Tendinitis of the Achilles and anterior tibial tendons. Posterior tibial tenosynovitis.
The anterior tibial tendon is bowed forward. Please correlate for any surgery in the region.

I guess Achilles and posterior tendon are now being damaged from the ant tib tendon bowstringing.

7/27 - I sent OS an email asking if he would reconsider releasing my  gastroc muscle to balance the bowstringing, now lengthened, ant tib tendon. Based on the latest MRI where it shows my Posterior Tibial Tendon now has tenosynovitis (1st stage of PTTD) and my Achilles has tendinitis  ( shows some calcification some x-ray also), I am hoping he will reconsider.

The articles I read, all stated that the equinus had to be surgically addressed to stop the progression to the flat foot deformity.

 Below are just a few of the many articles that I found with links and the relevant section.
TAL or gastrocnemius recession indicated for equinus contracture

 Gastrocnemius Recession
The role of gastrocnemius equinus in pes planovalgus has been well established.8-10 Therefore, regardless of the strategy to correct the deformity in the stage 2 PTTD foot, neutralization of the equinus influence must be a component. This may be accomplished in a variety of ways at either the gastrocnemius aponeurosis or the Achilles tendon level. The level of correction is not as important as neutralization of the deforming equinus force. Some authors propose a decreased risk of over-lengthening with a gastrocnemius recession when compared with an Achilles tendon lengthening.9

Gastrocnemius Recession (e.g., Strayer procedure)
Equinus is a tightening of the complex including the achilles tendon, gastrocnemius, and soleus muscles. Gastrocnemius Recession (Open or Endoscopic) is used to release the tension on this complex, thereby returning the Posterior Tibial Tendon to functioning ability.

Achilles tendon lengthening or gastrocnemius recession if equinus present

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on August 27, 2014, 06:44:31 PM
Hi Kristin,

Sorry you still not getting any further with your foot and ankle problems and will find that surgeons do not like to be told what to do even if the advice is plausible and beneficial for your particular type of surgery if it helps to prevent flat foot deformity!

I have no knowledge when it comes to foot and ankle problems as the foot and ankle are the main anatomy of the foot. I hope it can finally be sorted that has already turned into a saga.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on August 28, 2014, 01:51:18 AM
Thanks Nick. As crazy as it is, my OS has debated surgical techniques and procedures with me a lot. Usually, so far, after he gets all stubborn and wins the early battles, he eventually concedes that I am right and he will go along with a "whatever you want me to do" speech. If I approach him as a patient that needs attention or help though, he runs. I think he is used to having Fellows and medical students handle patients directly. I think I am the only one with his direct email. Lucky me.

I saw SportsMedDoc today for what I was sure was going to be a long frustrating lecture on AFOs and why I needed one immediately. Instead I was met by a sheepish doctor that kept staring at me leg and saying "how could I have missed this."  Whereas the new information in the MRI scans and report to me was the posterior tibial tendon, he was horrified at my ant tib tendon and how it has gone through all the layers and is up against my skin. I have been living with that since the Fall and it is shocking that he really never noticed or believed me that a problem existed in the tendon. I even had him ultrasound it several times last Fall. He says I need to get the retinaculum fixed. Forget botox, AFOs, and all other ideas they had tried to force on me. He talked to one foot surgeon while I was there and is going to contact others. He sent my OS a cell phone picture of one of the MRI scans with a note and then I had radiologist send him the entire set of scans. No response yet.

If anyone is interested in seeing what the MRI axial view of a extreme bowstringing ant tib tendon looks like, I have attached a photo. I have not seen photos of anything close to this on the web.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Lottiefox on August 30, 2014, 11:09:40 PM
Hi Kristin

So does this mean he accepts you need something doing as regard the anterior tib tendon ASAP? I have to admit the MRI doesn't mean a huge amount to me but I can see something isn't looking right. I am glad he's accepted that he's missed something and I just hope it now means this can be addressed. I read your updates regularly. Honestly I reckon you could get a residency in a med school on all this now...your knowledge must be more than half the med students and doctors. Amazing the way a direct need creates knowledge. I think I'm the same with the danged crps and also the intricacies of bakers cysts at the moment..

Keeping fingers crossed you get some good news and next steps...

Lottie xx
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on September 01, 2014, 04:12:19 AM
Thanks Lottie. Unfortunately at this point it is only my Sports Med Doc that is being helpful. OS never responded back to the email Sports Med Doc sent him which included photos of MRI or my requests.

The tendon that is sticking up at the top (black circle) should be more in alignment with the other tendons (smaller dark circles down to the right) there is almost a tunnel that shows from where it should be up to the point it is at. SMD says that the whiteness inside the tendon sheath is fat from the layers it has pushed through that has now infiltrated the tendon. To me, it looks like the axial MRI images for partial or full tendon tears, except it is bowstringing out of leg so a tear doesn't make sense.

I mailed copies of the MRI report, CDs of the MRI images and letters to OS, foot surgeon at NYU, and foot surgeon at Columbia Presbyterian on Saturday in hopes that at least one of them might review images and see if they can help. I also contacted OS#1 and OS#2 by email and asked if they knew of foot surgeon that could help - I included two photos from MRI. I thought I had a good lead in a podiatrist from Queens who was eager to have my MRI scans mailed to him to see if he could help, but later when looking him up on line saw him in discussions on how unfair New York State is in restricting podiatrists from operating on ankle or above. My NJ podiatrist operated up by my knee and in my leg, so I didn't know they restricted podiatrists from operating in the lower leg in any state. I still hope after reviewing MRI images he will be able to refer me to someone who can help. He's the only one that I am sure will look at the CD of MRI images.

9/4 - well all 4 surgeons to whom I sent the MRI CDs have them by now. I did hear from the foot surgeon at NYU this weekend before he received the CD. (I did not hear back by Saturday, so sent him a CD while I was sending the others out.) I had sent him am email last week telling him I had an MRI and sports med Doc says surgery is needed and asked if he wanted to review images. He basically wrote me that he was not interested and not his problem. OS did write back to Sports Med Doc earlier this week that he would think about a surgeon, but I have not heard anything from him directly.  I have not heard anything from the NY-P foot surgeon I saw and I have no yet heard anything from the podiatrist. I see the foot surgeon at HSS on Monday. No word at all from OS#1 or OS#2, but FS gave me 3 podiatrist/foot surgeon names in NJ.

My right knee, good knee - (although my left knee feels good now too and just my left leg, foot and ankle are a mess) has been bothering me the past few days. I'm constantly using my right foot to support my left foot when I sit so it doesn't arch over. I'm guessing my knee doesn't like my leg and foot to always be twisted to the side while supporting weight.

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on September 07, 2014, 04:26:53 AM
Today I expressed to a friend that I was starting to doubt myself even though I had MRI scans and a report backing up every symptom I felt She replied "Understandable to feel that way because they gaslighted you for months. You have a real issue. It's not imaginary."  I know what the term means, but looked it up on Wikipedia anyway. It fits pretty much how I ( and almost everyone else lucky enough to get an unusual complication) has been made to feel at least once by the doctors who should be helping.

"Gaslighting or gas-lighting is a form of mental abuse in which false information is presented with the intent of making victims doubt their own memory, perception and sanity. Instances may range simply from the denial by an abuser that previous abusive incidents ever occurred, up to the staging of bizarre events by the abuser with the intention of disorienting the victim."

I know those of us who haven't had easy surgical recoveries are often blamed by others on this site for being the cause of our own misfortune . "Unfortunately quite a few of these are looking to play the blame game; surgeon, circumstances, Workers Compensation/Industrial Injuries board, whatever. Their own negativity never comes into their equation either! ;-)" I have attempted to stay positive and keep moving forward over the past few years. I have read thousands of articles, texts and even surgical guides and have actively challenged, taught and debated with my doctors and surgeons, along with ordering my own imaging, invasive testing, bloodwork and challenging the radiologist reports to try to get the care I need. I'm not looking to blame anyone, I'm just trying to get out of this with as much function in my knee, leg, ankle and foot that I can.

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Chester57 on September 07, 2014, 01:00:25 PM

Watching you go from a strong, determined, confident woman searching for a solution to an unusual set of issues to one who was doubting her own sanity was heart wrenching.  I knew how you felt from personal experience and I wasn't about to let you continue to feel that way. Remember, I have been along with you for this ride you have been on for over a year and it is a lot easier to see what is going on when it is happening to someone else.  Quite frankly when you said you were doubting yourself I thought my head would explode.

The fact of the matter is they gaslighted you because (1) they didn't (and still don't) know how to treat you and don't have the nerve to tell you so and (2) they realized they screwed up and now have to CTA -- plain and simple.

I cannot even comment on the remarks made on the board which you alluded to other than to say they are mind boggling. 

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on September 09, 2014, 03:15:33 AM
Thanks Chris!! (you have already seen below)

I saw FS at HSS this afternoon. He says from the MRI he can tell that my ant tib tendon has completely torn, or at least mostly torn, and has scarred down in a lengthened position, thus allowing me to still partially use the muscle. (I told everyone that I had torn the tendon last Fall!!) The scarred down lengthened tendon along with loss of retinaculum has caused all the problems. He says from watching me walk he can see that I am covering with other muscles.

He wants me to go to a gait analysis ASAP and then wear an AFO for 2 weeks to see how it helps. He wants me back in there again by the end of the month. He finally told me that October is his month to present at the Difficult Cases / Freak Show meeting where 9 doctors present cases to each other and then all stare at the freaks and give input on what to do next. Apparently I am "an unusual and difficult case." The gait analysis and AFO wearing would be for presentation data. Sounds like not a lot of fun at all, but I guess it would be a group of doctors all trying to help me. ( I'm assuming they are all HSS surgeons)

He said right now he does not think retinaculum can be repaired and that is why I only saw the one case out there. He thinks either gastroc release to relieve tension or repair of the torn ant tib tendon. He wants to see what other ideas the rest of the surgeons come up with.

So I guess I jump through these hoops and head for the freak show in a few weeks.

I sent OS the above as an email. He wrote back "I would still try Botox in gastroc see if it helps
Tendon didn't look torn- but it's possible mri probably to confirm." When. I reminded him I had sent him CD of MRI that I ordered, he said he would review it tomorrow. Ugh...
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Chester57 on September 09, 2014, 12:36:18 PM
There are no words fit to describe "Sybil".  His responses have rivaled my all time favorite post on this board where the poster's OS or, as she named him, "Dr. Moron" told her to go out and garden to forget about her knee pain (   

His behavior has been, at the very least, unethical.  >:(:o

Hopefully the FS at HSS will be able to put this entire fiasco to rest.  This once again proves that if in your gut you feel something is wrong, regardless of how many men in white jackets tell you you are crazy, go with your gut.

I am, however, waiting with bated breath for Sybil's next "intelligent" reply.  ;)


Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on September 11, 2014, 04:30:29 AM
Well, I heard back from 2 of the surgeons that I sent my MRI scans to.

The NYU FS had no interest in seeing MRI scans originally, but I sent an email to him after I saw the HSS surgeon and found out my ant tib tendon was torn. I wrote him so maybe he can learn and not be so dismissive to the next person. He wrote "Please keep me updated on their decision.  I hope you are feeling better." Not sure why finding out my tendon is torn and if it can be fixed it is difficult surgery, would make me feel better.

The NY-P surgeon left a message on my phone early this morning and then emailed me. He is a really nice man, but starting off that appointment by seeing my surgery list scared him. He told me he reviewed MRI and he knew that I wanted retinaculum repaired, but he thought AFO was a better plan. He was willing to meet again to discuss surgery if I wanted. I wrote him back telling him of meeting with HSS surgeon, the new diagnosis of torn tendon and the request by surgeon for me to be show and tell project and told him what I had seen in MRI and researching.  He wrote back "you are not an annoying patient.  You are asking reasonable questions.  No doubt my friends across town may propose another surgery to you, but I think you are at risk of having "too many surgeries."  I think the smartest move is to stay away from surgeons for a while.  But we could discuss again in the office if you really want to"

Still waiting for gait analysis lab to get back to me to see if insurance will cover. If not it's over $2,000 so not practical since won't change treatment plan and just or presentation purposes.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on September 13, 2014, 03:03:46 AM
I heard from the podiatrist in Queens and my OS.

The podiatrist gave me the name of another podiatrist he knows that handles the most difficult cases. He said that the other podiatrist  is very involved with research etc and an excellent surgeon and was willing to see me on Monday if I wanted, to discuss replacing the retinaculum in my ankle. I told him that I wanted to hold off seeing other surgeons until I get through the difficult case meeting at HSS and make sure they all agree on what my diagnosis is and give proposed treatment plan. Told him that HSS seems to think ant tib tendon tear is the problem and not the missing retinaculum. He wrote back "Tib anterior tears are not uncommon, I have personally repaired them and gave a presentation on them, nor are they difficult to repair.I think for you repairing the retinaculum is more of a challenge. Go to whomever you are comfortable with. I would say orthopedists and podiatrists are trained differently and so may have different insight so a different opinion may be good." He's a really nice guy and I am very thankful he took the time to look at MRIs and give me advice. I will be in touch if not comfortable with HSS.

OS finally got back to me tonight. "I reviewed mri with our radiologists It's not torn" when I asked if they had seen anything else in MRI besides the tendinitis and tenosynovitis he responded "No"

So, I still am trying to figure out who to trust in all this. I have several surgeons willing to operate (and several not willing), but not sure what operation is needed - retinaculum repair, tendon repair, gastroc release or some combination of the above.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on September 17, 2014, 04:13:24 PM
 There are too many conflicting opinion on whether my tendon has torn. Not sure what to believe.

HSS, NY-CP ( since surgeon offered to repair tendon, I am assuming he agrees with tear) and Sports Med Doc are all on the side that tendon has torn and has scarred together lengthened. The ant tib tendon is one of the tendons that are enclosed in a sheath and without the constraints of the torn retinaculum, is now in a straight line instead of curved contouring my ankle. There are plenty of reports that show the Achilles' tendon, also in a sheath and in a straight line path, can scar lengthened. "The history of neglected Achilles tendon rupture is often characterized by an overlengthened spontaneous repair by scar tissue. The accompanying weakness of the calf muscle can be treated by several reconstructive procedures." ( I also had sworn I felt my tendon tear last Fall.

NYU OS and radiologists, the podiatrist from Queens and his expert (they called me the other day to say reviewed my MRIs together and they do not see tendon tear, say retinaculum is intact, but my ATFL ligament is torn), a well known OS from Texas (only saw photos of 3 of the over 300 images) all are going with the tendon is not torn. Words of wisdom - if you attempt to dorsiflex your foot and you can see or feel the tendon, it's not torn. Advanced imaging is no substitute for common sense.

I scheduled an US of my ant tib tendon for next Tuesday with the SportsMedDoc. I was hoping he would give me a prescription to go to radiologist, but he wants to do it himself.  I have the gait analysis test finally scheduled in at HSS on September 30th. Not sure when I will see HSS surgeon before case meeting and when I should do the trial AFO wearing. He is out of town until Friday so won't have answers before then. Now I have to figure out where to get an AFO.

If tendon was torn last year, then surgical repair will not be an easy surgery or recovery, but it would offer me hope of being more active again. I would also have a team of doctors interested in and working towards my recovery.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: missmyknee on September 17, 2014, 07:57:11 PM
Hi Kristin

My AFO was made by the brace shop, connected to the hospital, where my doctor was located. They used a laser, to measure all around my foot and ankle. The laser was connected to a computer. It provided precise measurements to custom make an AFO,  just for my foot and ankle.

The brace shop,worked with the PT dept too.

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on September 18, 2014, 06:18:27 PM
Hi Kristin,

I am sorry not to have posted on your dairy for a while, I have been too busy and stressed out to come onto KG to read through posts and only had time lately to post on my post op diary. You have always given me good advice and guidance as you been through a lot of ups and downs with your knee and continuing foot/ankle problems.

I saw a Sports Med Doc shortly after my 1st exploratory scope and did manage to get me back running again briefly with some IMS treatment that I had to negotiate myself as the NHS pain clinic doctor was not that great. Back then I said to him could it be AF in my right knee and shook his head.

Having the correct gait may give you some slight pain relief but will not solve your foot/ankle problems. I have been told to see a podiatrist myself, keep on pushing to get the treatment you deserve! I know nowadays that you have to be a more pushy putting them under pressure as they are hoping that you forgotten or given up and will not bother them again so choose not get back in contact with you.   

[email protected]

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on September 22, 2014, 07:08:54 PM
Thanks Pam and Nick.

Pam - I'm waiting to hear back from HSS surgeon to see if he still wants me to try the AFO. I just need to get an off the shelf one to try for him so he can report in his "difficult case" meeting if it worked for me, my reaction and if I'm willing to keep wearing it. That meeting is sometime in October and the gait analysis group can't see me until September 30th so not sure if there will be enough time after to wear brace before meeting.

Nick- gait analysis is not to treat me but to give him data on my case to present at the "difficult case" meeting next month. I'm hoping the group of surgeons at HSS can figure out what to do with my leg.

I have the US of my tendon tomorrow. That test is just for me so I can be sure that the ruptured ant tib tendon theory is correct before I suddenly have surgery scheduled to repair it.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on September 26, 2014, 03:52:29 PM
I had the ultrasound on my tendon on Tuesday.

My SportsMedDoc usually only does an US of the ant tib tendon for tenosynovitis and was not completely sure how to trace tendon to arch. He said some parts looked different but he thought he could see at least some continuous fibers throughout. In comparing to my other leg's tendon, the left tendon is extremely, extremely thickened (huge).  He said he did not see anything that would be similar to an Achilles tendon rupture. I did explain that HSS did not expect a gap  or instability, or large stumps since they are saying it scarred together. I forwarded images and what SMD said to my OS, who then stated "The tendon is inflamed- no surgery needed"

I started researching and sent the following article which seems to be what HSS thought had happened with my tendon to my SMD. the article is of a patient with a one year old undiagnosed ant tib partial tear.

SMD responded "My impression is not acute full thickness rupture with retraction, but yes the tendon diameter is enlarged which can signify tear but more likely tendonosis (hypoechoic) but overall I believe we see good fibrillar fiber like continuity, it is possible it is torn like article but not of that severity which makes it difficult to say, when looking at achilles tears the tendons have always looked much worse and often fusiform (football shaped) and much larger with much more loss of fiber". After reviewing article also, OS now stated "I agree with Marc. In addition, the gastroc is overpowering the tib ant which- reason is open for debate While you are going thru HSS w/u see Dr. XXX - peds foot and ankle who does a lot of ankle work on adults" So, ultrasound did not give any clear answers, but both SMD and OS are good with me going forward with HSS meeting.

I looked up the new surgeon and he is primarily a pediatric surgeon (chief of pediatric orthopedics) who does work mostly with bones - scoliosis and limb lengthening/rotation and also is a head doctor at the bone center of the hospital. Doesn't seem a great match for my issues so not contacting him unless still confused after HSS meeting.

The HSS timeline is happening quickly. I have the gait analysis on 9/30, see the surgeon there on 10/3 and have to be in NYC at 7am on 10/9 for the difficult case meeting. AFO brace is arriving today. Hopefully in the next two weeks I will know what the plan for my leg will be.

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on September 27, 2014, 08:37:13 AM
Whew. In spite of the hesitation on the part of your current docs, I'm really glad the HSS analysis is moving forward quickly. I really hope that the difficult case meeting is the intervention that your leg has been needing - just the acknowledgment that a different approach may be needed here seems to be positive. Will be keeping fingers very tightly crossed for you over the next two weeks.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on September 30, 2014, 03:20:21 PM
Hi Kristin,

Good luck with your gait analysis appointment today followed shortly this week with your OS this Friday. I am sure you will give an update after the big meeting on October 9th and hope that AFO brace is giving your some much needed relief.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on October 01, 2014, 04:41:04 AM
Thanks Snowy and Nick. I really hope the surgeon at the Hospital for Special Surgery will be able to help me.

I had the gait analysis today in at HSS. I had to change into shorts and tee shirt and take off socks and shoes. First I had manual testing by the PT who compared the flexibility in my leg, ankle and foot joints and the strength in my different muscles and watched me walk. Then electrodes were taped to each muscle in my left leg and foot and sensors put on my toe, arch, ankles, knees, hips, shoulders, elbows and wrists and connected to a computer power source that was in a vest I had to wear. I then had to walk back and forth while computer generated full body image of all my joint movements was created and also a functional EMG recording of each time my lower leg muscles were activated was created from the data sent from each of the electrodes. She measured my steps and took note of when my left foot would not clear floor or when I apparently raised my right hip higher to help my left leg clear the floor. Once that test finished I had to keep walking for longer distance back and forth while multiple video cameras recorded my legs and feet and also several balance and raising up on toes exercises. I also had to walk on sensors that measured the pressures exerted on each part of my foot when i walked - this was shown on the computer as a 3-d colored image and was pretty cool.

I see the HSS surgeon on Friday to discuss what is to be presented in meeting.  The PT told me about the meeting next week. There are up to 3 patients  included each time. The patients are put into examination room to wait while the doctors and their guests have a presentation meeting on the day's cases. Then the entire group goes room by room while the presenting doctor exams his patient in front of the packed room and demonstrates the problem. The other doctors can then each examine the patient if desired or ask patient or presenting doctor any questions. The doctors then go back to their meeting room and discuss what should be done for each and come to a decision. Each patient's doctor then tells their patient what options were considered and what the doctors thought should be done. If the patient agrees with the plan, surgery is scheduled.

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on October 01, 2014, 03:54:43 PM
Hi Kirstin,

Glad your gait analysis went ok yesterday, it sounds very technically advanced and hope something positive comes out of it for you.

The team of doctors on Friday sounds good to have a few discussing what to do next with your HSS surgeon.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on October 02, 2014, 04:49:00 PM
Tomorrow's meeting is just with the one surgeon at HSS that i saw first. I am still honestly unsure if my tendon is torn or not. I hope the surgeon will be able to explain to me why he feels tendon is torn. He will have the results from the gait analysis too.

Next Thursday's meeting really goes against everything that I have been through in the past few years and I am having a hard time accepting the decision-making procedures there. I will have to hand over complete control to a group of strangers to make a surgical decision for me without me being even present in the room.  If I'm still unsure going into that meeting if tendon is torn, I have to decide if I should just give in to the ultra paternalistic medical system at HSS and accept what these men decide is best for me after discussing everything in their private meeting, or get another opinion to verify diagnosis. I'm not generally a blindly trusting person and have had to be way too involved in the testing, diagnosing and surgical planning in the past, but I am sick of diagnosing and playing doctor myself, so maybe it is time to let these doctors take charge since they want to diagnose the problem. It is temping, but not sure because it is a good idea or just because I am tired.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on October 02, 2014, 08:33:45 PM
I'm not surprised you're tired. It's been a very, very long road for you to get to this point.

In some ways you're getting the second opinion from having several different doctors examine you. I think I'd be interested in hearing whether they're all in agreement on the diagnosis, or whether they end up with varied opinions among the group.

Maybe it's not the worst thing that it's a completely different approach to anything you've tried previously. It's at least a different way of looking at the problem, and having a lot of expert eyes on you. I completely understand where your caution comes from, too - I'd also have trouble handing over complete control in those circumstances.

I'll keep my fingers crossed that things go well tomorrow and that you're comfortable with the proposal they recommend.

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on October 03, 2014, 04:10:36 PM
Hi Kristin,

I hope your appointment goes well or went ok with the time difference may have already had the meeting. I hope this time round that they have come up with a good plan that will benefit you.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on October 03, 2014, 07:45:26 PM
Thanks Nick. The note below to my OS sums up my meeting at HSS today.

Hi Dr. Xxxx-

Now, Dr. HSS does NOT think tib ant tendon is torn and thinks he was looking at scar tissue from retinaculum before. I did not bother showing him US since none of us saw tear in those images. The meeting next week is still on, but now the topic is should he release my gastroc or will that weaken my leg too much. Unfortunately the medical system at HSS is stuck in the 50s, so I will be in exam room for the meeting while presentation and discussions happen elsewhere in private. They will all file into my exam room for show and tell, but leave before discussions. I will then be informed of the decision and surgery being proposed. Ugh.

What everyone seems to agree on is:

My retinaculum is no longer intact
Tib ant tendon is bowstringing
Tib ant is weakened from being lengthened; at diagonal now instead of following contour of ankle.
Gastroc is overpowering weakened tib ant.

Most seem to think retinaculum reconstruction is not feasible. Podiatrists want to try and overly nice guy at NY-CP will discuss but really doesn't want to.

I had thought of lengthening gastroc before and had asked you about it. Problem could be leg weakness and/or matching antagonist length/strength especially as tib ant tendon continue to stretch.

As for the AFO, I hate it. Have been trying to wear it for week, but causes me to limp so much more and tires out muscles on good leg trying to compensate. I would have less function than I have now wearing AFO and be more limited in activities. It does help with the severe pain I get in arch after activity, but not worth loss of function. If my foot would explode without it, I would give up any chance of being active or enjoying extended activities w/o crutches, wheelchair or scooter and suffer with it on,  but would never put it on again if it is "just to help me.", because it doesn't.

I still do not understand why tib ant tendon can not be shortened to adjust its length to its new diagonal bowstringing alignment. Articles describe surgery on club feet where the tib ant tendon is moved and left outside of retinaculum (at correct length) and only problem from bowstringing is cosmetic.   
 If the ends of a torn tendon can be sutured together and form a strong tendon again, why can't a section be cut out of mine and then I keep my strong gastroc, but also have a strong tib ant tendon?

Too much to try to figure out, but not sure  gastroc release alone is right choice.



OS wrote back to see a pediatric orthopedic surgeon at NYU that specializes in club foot surgery for advice. If he is in my insurance network, I will try to see him. The NY-CP surgeon also listed club foot surgery as a specialty, so I might talk to him too.

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on October 04, 2014, 04:18:26 PM
Hi Kristin,

Sorry the meeting with the team of doctors did not turn out what you was hoping for! I know from peronal experinces how painful scar tissue problems can be with after having had AIR surgery on my right knee that of course is not what is causing the main foot pain.

Seeing the pediatric orthopedic surgeon and the NY-CP surgeon is also a good option to go for at this stage with your ongoing saga that you are going to follow up on and see what they both say what to do next.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on October 07, 2014, 04:30:33 AM
Ugh, what a confusing situation. It's an excellent question about the possibility of shortening the ant tib - I really hope that you're able to find someone who will consider this and be willing to discuss the pros and cons. Are you going to try and pursue retinaculum reconstruction given that most of the doctors weren't convinced it was feasible?

I hope something good comes out of next week's meeting.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on October 07, 2014, 07:30:24 PM
The appointment with the foot surgeon actually was worse than I wrote to OS. After he finally admitted he had misread my MRI, the surgeon started up maybe foot was being pulled over because I had post-polio syndrome. I've never had polio!!! Even putting that point aside, my gastroc muscle is very strong and is overpowering the weakened ant tib tendon ( that tendon is weakened from the missing retinaculum). The damage from polio occurs on the motor neurons in the brain stem and spinal cord, whereas a stroke is in the brain ( documented by CT scan). Post-polio syndrome shows increasing problem with the motor neurons that is seen easily on EMG tests, my tests have been and continue to be normal. My condition also started the day after I felt the retinaculum rip away in my ankle. And, I NEVER HAD POLIO!!

Not only am I hesitant to weaken another muscle in my leg, I'm not sure I trust this surgeon since he has little understanding of my medical history. I did send him an email after the appointment to try to get him to focus on the injury in my ankle, but not sure if it will work. At this point  I am still going through with group meeting on Thursday in hopes some of the doctors there will talk sensibly. I did write to NY-CP surgeon today asking if he will discuss shortening or moving ant tib tendon and also unfortunately verified the NYU surgeon doesn't take my insurance. Outside of the podiatrists, most of the surgeons are opposed to retinaculum repair.

10/8 - I just got a call from HSS. Meeting is still on, but they want me to bring in MRI images because they do not have them there. So somehow, without him seeing me or my MRIs in between appointments, he came to the conclusion that tendon not torn and scarred lengthened, but I have post-polio. He had no MRI images to recheck. I do not have a lot of confidence in this place.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on October 10, 2014, 07:47:55 AM
Good lord. I'm not even any kind of medical expert, and the polio thing seems insane. I think you're right to be really hesitant to proceed with this guy. At least the group meeting does have the possibility of introducing some different perspectives, even if latest signs from the main doc aren't encouraging.

As always, keeping fingers crossed for you. I hope the meeting turns out to be unexpectedly productive.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on October 10, 2014, 11:53:04 AM
Well after dragging myself into HSS early in the morning, I was told that my having had a stroke makes any "muscle tendon surgery too complicated and risky for anyone here at HSS to do", but they're "not saying that there is not a surgeon somewhere in the city that could help" me. Told it was "stroke day" there that day with another woman who had stroke at 12 also in the presentations. She was being sent away as too complicated too. So, anyone that has any unusual past medical history might want to make sure they have a back-up plan for treatment if they are meeting with the Foot & ankle group at HSS and also realize that being brought into the difficult case meeting may not be for surgeons to actually try to figure out surgery on your case, but just because the surgeons need to bring in monthly show & tell cases. The surgeon never brought up my email, but was very cold towards me. He never did say the words "post-polio" in my presence this time. My guess is that he did not  bring up options for group to consider except dismissing me. I was not at the discussions.

The NYU club foot surgeon is out of network for all insurance. If I can't get anyone in-network  to try to fix my leg this year while I am paid up in full with insurance, unfortunately I have to get working full-time again so leg will have to go for a long time before I can get time off etc. to fix. I might start lining up pain management docs that can keep my tib ant and maybe also tib posterior and Achilles tendons full of steroid injections so it might cut down on some of the constant tendon pain outside of the CS pain. At least my foot wouldn't hurt as much. Risk of rupture better than a head full of pain pills.

I am trying to see if NY-CP surgeon will still see me again to discuss any surgical options - he does pediatric club feet too, but not primary focus. I'll also call the podiatrist that wants to recreate my retinaculum to see what he would propose doing.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on October 11, 2014, 05:25:09 AM
That is a really sh*tty outcome. I mean honestly, what's the point of having a "Hospital for Special Surgery" if they're not prepared to deal with something that, while unusual, isn't exactly on the Dr. House scale of out of the ordinary? You're far from the only person to have suffered a stroke at a younger age. Admittedly that coupled with the leg history is a complex situation, but isn't their whole purpose to deal with complex situations?

I'm glad you're not totally out of options, but really frustrated for you that this part of the process didn't work out better. Please keep us posted on how the conversations with the NY-CP surgeon and podiatrist go. I hope better than this.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on October 21, 2014, 06:12:07 PM
Thanks Snowy. I have actually heard of other people turned away from Hospital for Special Surgery. Most had arthrofibrosis. I saw the NY-CP surgeon last week. He talked more about replacing the retinaculum, but then started waffling back and forth between helping me and not wanting to make things worse and gave surgery 50% possible success. Told me that surgeons want to help. If a patient keeps coming back asking for surgery, a surgeon will come up with some surgery to try to help. It's the only way they know to help. He told me to call him in a few weeks to discuss again.

I have a new but related problem that started this morning. Yesterday I overdid it and moved a couple of large shelfs worth of toys my son no longer used to the basement. In a lot of pain last night, so took a Percocet to sleep. Awoke this morning with pain in top of foot and it felt stuck and misaligned. Could barely put foot down walking toward bathroom. Loud snapping cracking sound accompanied by flash of severe pain across top of foot and I passed out. When woke on floor, foot pain not as severe, but raised lump across top of foot where pain came from. Have foot in surgical shoe so I don't bend it. Scared to feel that pain again. I think it was the extensor tendon(s) subluxing overnight and then snapping back. I am waiting to hear back from OS, NY-CP surgeon and Sports Med Doc. Tendons have been subluxing (jumping with loud snap) if I move foot certain ways, but they never got stuck before.

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on October 22, 2014, 03:24:02 AM
My god, that sounds awful. Knowing what you've been through I can't even imagine a pain so severe that it would make you pass out. Please let us know what the docs think - I really hope this was a one off and it doesn't happen again.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on October 26, 2014, 03:44:11 AM
Well, not much hope of help from any docs. The Sports Med Doc is a great guy and is trying to find me surgeons, but so far all but one are out of my insurance network. My OS disappeared again after asking for photo of bruising. The NY C-P surgeon never even got back to me at all, so I think this "super nice guy" has run away with all the other surgeons.

I still have a large bruise over top of foot where tendon(s) got stuck. The minor jumping/subluxing of tendons is now happening in that spot in the middle of my foot as well as on the lateral side. My knee has been buckling a lot over the past few days. It feels like muscles on lateral side of calf are giving out.

Up until this, I was focused on just the tib ant tendon since it was causing all the pain and problems. I hadn't thought that the minor subluxing of the other extensor tendons could turn into a problem other than just being annoying. The surgical option of releasing my gastroc muscle would not have helped at all with this new problem.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on October 27, 2014, 04:58:11 PM
Hi Kristin,

Sorry you are having on-going problems still with both your foot and knee, it does not help if the professional or so called experts that are not pulling their weight by having a laid back attitude towards trying to help a patient with chronic condition have a better quality of life.

At least you have a trust worthy Sports Med Doc supporting you and trying to deal the best he can with you present problems. As you know the UK has the NHS that is a free health service that's funded mainly by the UK tax payers through national insurance contributions.

The NHS do a fantastic job at the A&E and cancer care and treatment just suck when it comes to common surgical procedures not giving any adequate aftercare. I am now concerned that AF has returned back to my right knee after AIR surgery as I was not given any sound advice or aftercare post op.

Keep fighting and battling on that can be hard to adjust to at times when things do not seem to be going right!

[email protected]

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on October 31, 2014, 01:18:29 PM
Today will decide if I give up on fixing my leg or if I keep trying for at least a few months more during current insurance year. On Monday of this week, I started wondering if I should just give up for now trying to get the retinaculum in my ankle replaced and try again at some time in the future when something eventually tears, rupture or I break something falling either after passing out or when my knee buckles. Maybe if a surgeon has something more "normal" to fix first then they would attempt the retinaculum. I was frustrated and leaning towards giving up since right now there are no surgeons willing to help, so I sent a few job resumes out. I received an email back within the hour from one company asking if I was available at 2 or 4 the next day for an interview. I met with the hiring manger on Tuesday and was told a decision will be made by today, Friday. If I get offered the job I will accept it. I would not be able to take off for elective surgery for at least 6 months. Seeing how there is no one willing to help me, I'm not exactly walking way from any help either.

The extensor tendons in my foot are snapping and subluxing over the bones in my foot throughout the day. The tendons are very sore and the pressures are up. Every time I increase activity, the pain level in my foot, ankle and leg goes way up at night and I end up hitting the leftover percocets. When I run out, if I get the job, I will have to see PM doctor to get on some medication to sleep through the pain. This new job would involve me being on my feet a lot and more physical activity.

I told OS Monday I was at point of giving up on leg and he started trying to encourage me to see another surgeon at NYU, who he had promised to speak to for me weeks ago and never did, and "regardless of money" get a consultation to see what can be one. The new surgeon doesn't accept insurance and will either tell me that my  retinaculum needs to be fixed but I will never find anyone to do it and should give up and wear AFO, or will tell me in detail how it should be replaced. Seeing how I can't afford for him to to do the surgery and even if I have a written draft of a needed surgery, no surgeon is willing to help me, it doesn't seem worth it since it would be $450 just to talk to him.

I'm jumping every time the phone rings. I need to start working again and the job is interesting, but I really don't want to give up on leg and accept a life of pain, disability and meds either.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Lottiefox on October 31, 2014, 11:09:47 PM

I have been following every post you've made. Apologies for not commenting more. I am so sorry you're stuck in this dilemma. I feel so sad that you're faced with the prospect of currently giving up on your leg. It seems so wrong that this is a choice you are possibly making. I wish there was a doctor willing to look at your problems and work through solutions and options. I think many of us know we will never get a perfect joint again, but to have a life relatively free of pain with the chance to be active and enjoy time doing stuff isn't too much to ask for surely. I kind of hope you do get the job. Then at least you can feel you're doing something you enjoy and are appreciated for. But as you say, living in pain and on meds to do so sucks. Hang on in there. I do believe that eventually your tenacity and courage will take you to the person who can this leg as good as it can be. I just wish they'd hurry up and appear...

Lottie xx
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on November 06, 2014, 03:30:18 AM
Hi Lottie - wasn't sure you still checked in here. Your life seems so busy on Facebook.

I thankfully did not get the job. My leg has been collapsing without warning more often and has been very painful at night. I really need to get this leg fixed. I had started to make myself be more active and work on some projects around the house to prepare my leg for working again, but it just can't handle it.

I met with a podiatrist in my town yesterday. He said that he couldn't help me, but was going to talk to another surgeon that might be able to help. He kept my large binder of medical notes, test results and surgical reports to copy and said he was going to call the radiology group that I had the last MRI with to get the retinaculum checked. He doesn't understand why the podiatrist last Fall did a tarsal tunnel release.

I met with the podiatrist today again. I have an appointment with his friend, another podiatrist that does advanced surgeries, next Wednesday. A different radiologist read my films and said the retinaculum is torn on the medial side Inconclusive if lateral side is torn too. The other surgeon and him are discussing the best way to fix retinaculum. He asked, if it was okay with me, if he could assist on the surgery his friend does on my ankle. I told him if his friend can fix my leg he is welcome to join in,
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on November 08, 2014, 03:10:18 PM
Hi Kristin,

Good luck with your surgery, will have my fingers and toes crossed this time the surgery will give you some much needed pain relief!

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on November 08, 2014, 09:44:36 PM
Thanks Nick.

Unfortunately I can't count on anything really happening yet until after I meet the surgeon on Wednesday and then he agrees to schedule surgery. I did find out that he is an associate professor for surgical services at a major podiatry college in NYC. He has been at conferences presenting alongside big name MDs that specialize in orthopedic foot and ankle surgeries. I really hope that he still thinks he can help me after he examines my leg and meets me. The first podiatrist said I may need a new MRI focusing on the retinaculum. I'll post after my appointment on Wednesday.

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Lottiefox on November 08, 2014, 10:52:26 PM
I will be thinking of you on Wednesday and hoping you get some good decisions. It does at least sound like this surgeon might be willing to try and help and focus on what needs attention. Keep us posted,

Yes I still check in here, mainly to see how you are doing and how Nick is getting along! Seems we all have longstanding issues to juggle. My life is pretty busy, maybe not as much as I'd like. Been struggling with a disc issue in my back for a while too, as fast as one part settles another one decides to throw a tantrum. Two new kittens this week, brothers who are six months old. House is double mad!

Good luck this week,

Lottie xx
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on November 11, 2014, 05:44:31 AM
Likewise...I will keep my fingers crossed that you've finally found someone who is willing to take action and try and fix your leg. You are more than due a break on this. I really hope the new podiatrist is willing to go ahead and work on the retinaculum. Here's hoping.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on November 11, 2014, 05:36:09 PM
Hi Kristin,

Good luck tomorrow we will all be thinking of you and that you make a speedy recovery. It is good that you have us on KG to give you some much needed support and guidance to get you through this difficult period you are going through right now.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on November 12, 2014, 11:49:32 PM
Thanks everyone. The appointment went well.

I saw the new podiatrist, today. He is sending me for more x-rays (could not open one from Columbia Doctors) and is talking to his hospital about setting up an MRI with sedation for me so he can get a good look at where the ankle retinaculum is torn. He could not tell if involved both the lower and upper retinaculum. He talked about lengthening Achilles ( said both parts so I don't end up with CS again if he did gastroc only) and depending on where and which parts of retinaculum are torn, talked about using nearby ligaments, bone periosteum or nearby fascia to reconstruct.

Here's what his prescriptions said:
X-ray. Ankle and foot, Left (multiple views) weight bearing
Dx: cavus foot s/p compartment syndrome
Please provide a CD

MRI, Foot Ankle and Leg, Left with sedation
Dx: bowstring tibialis Anterior tendon with loss of superior and inferior extensor retinaculum s/p fasciotomy
Please provide CD
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on November 13, 2014, 05:20:45 PM
Hi Kristin,

I am glad that your appointment went well yesterday, it looks like your podiatrist knows what he is doing so will be worth going through sedation while having an MRI done to help give clearer images of what is exactly up with your ankle. Sounds like your podiatrist knows what he is doing and is actually going to do something about it.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on November 22, 2014, 11:07:42 PM
Not much to report. Just waiting to get MRI done. As expected, since I just had xray in July, my ankle foot xray came out fine

Impression: slight scattered osteophyte formation is seen with no acute disease.

Findings: no displaced fracture or dislocation is seen. Some slight osteophyte formation is noted. The joint spaces are well preserved. There is no lytic or blastic process seen.

I have the MRI with sedation of my foot, ankle and leg scheduled for this Tuesday and see the surgeon again on December 3, the following Wednesday. I hope that he will be able to clearly see the retinaculum in this new MRI and will be able to tell which parts are torn/remain. I am hoping to be able to schedule surgery this year before a new deductible and out of pocket maximum start in January.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on November 26, 2014, 08:39:36 PM
I had the MRI yesterday. The hospital must be a teaching hospital as the radiology department was a group of guys in white coats in their early twenties, as was the anesthesiologist assigned to me. I looked at the images on the disk today. There are 9 series that are from mid calf to foot. On series 7 & 8, in the early images in each series both my legs are shown, but after about image 3 or 4 on each, the images overlap and the features of neither leg can really be made out.

I called the radiology department with the hope that maybe I just had a bad disk and that this error could be corrected. They first tried to convince me that the overlapping images were done on purpose and were a special type of scan of the same leg. I told them that was not true, by looking a locations of fibulas and leg diameters, it was clearly showing two different legs and overlapping them. I was then sent to a supervisor and finally to the radiology tech. He claims that those were extra scans anyway and he didn't want to prolong exam and keep me under anesthesia longer. Since there was a series 9 done after, I believe that to be a lie. No one obviously checked the image quality during or after the scans before I was brought to recovery.

I hope there is enough in the remaining scans for my surgeon to be able to see what he needs
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on November 28, 2014, 04:06:34 PM
Hi Kristin,

Good look with your appointment next week Wednesday, I do hope you can get what you want out of the consultation with your OS.

It would be better to get the surgery out of the way before the start of the New Year; hopefully 2015 will be the turning point towards a slow but gradual recovery that's normal after any type of surgery. Unfortunately you have experienced a fair few surgeries already that is never a pleasant experience to be going through.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on December 02, 2014, 03:26:32 PM
Keeping my fingers very tightly crossed that your appointment tomorrow goes well and that the MRI image quality isn't an issue.

Edit: still hoping all goes well even though I've realised that today is actually December 2nd, not 3rd. ;)
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on December 03, 2014, 09:25:45 PM
Thanks Clarkey and Snowy. I mostly had a very good appointment today.

The surgeon thinks that lengthening my achilles tendon would help since the back of my leg is very tight. He also wants to find a way to hold my ant tib and other tendons in so they stop snapping over bones (lesser tendons) or bowstringing (ant tib). He said my foot shows major signs of untreated compartment syndrome. I told him that pressures were measuring really high in deep post (40), ant tib (27) and medial foot (53) but surgery to release pressure was cancelled in the Spring, so pressures have continued to be too high since April. (Normal pressure should be under 15 mm/Hg at rest) He says my foot is misshapen in the classic shape for untreated compartment syndrome now and arch is too high, toes clawed over and back of heel not touching ground right when I walk. I hope he will help with tendons and see if that is enough to get pressures to come down. We can then see if foot mellows out and only address problems then if causing pain. My foot has been arching over for 8 months now, so hopefully if pressure is removed then it might  reshape itself again.

Surgeon is going to call radiologist to discuss and also will call my OS. He said he will be in touch soon. Unfortunately, it is very unlikely to have surgery done this insurance year.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on December 04, 2014, 04:02:00 AM
I mostly had a very good appointment today.

That's fantastic to hear! I can think of very few times while you've been dealing with all of this that you've been able to say that, so I'm really glad it was successful. The proposed course of action sounds positive and practical, which is great. I hope you don't have to wait long for more news.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on December 04, 2014, 01:42:24 PM
It's kind of sad that my idea of a good appointment now is one when the surgeon doesn't run away or tell me to go away after he realizes the extent of the problems in my leg and foot.

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on December 09, 2014, 01:31:02 PM
Over the past month I had been feeling more symptoms in my foot, but never considered the fact that it might be trying to permanently change shape. When I walk downstairs, it has been increasingly difficult to keep my slipper from sliding off my foot as I step down. Annoying, but wasn't alarming enough to get me to realize extent of problem. Standing barefoot was becoming uncomfortable and without realizing it, I was wearing slippers at home whenever I stood even for few steps across room. Last week it started feeling like a bone in the ball of my foot by my arch was pressing into bottom of tub when I showered. It was actually very painful.

After surgeon told me foot had changed shape to cavus and he most likely can't operate until next year, I realized foot changes were all recent and I had to try to stop them and not let things continue to get worse for another month. I started wearing elastic ankle/foot brace and orthotics during day and sleeping in postsurgical brace that keeps foot in neutral position and doesn't let it plantarflex (point down or arch over). I think my efforts are at least slowing process. Going downstairs is easier and my foot has not hurt in shower since stretching it more. Lesser toes hurt though ( feel like stepped on) from being forced straight. I'm not sure if changes are from untreated compartment syndrome ( quite possible - I had done a lot of heavy manual work cleaning out garage and organizing basement. Work that required me to take pain killers at night to get thru CS pain.) or from having my foot just arching over from retinaculum tear and subsequent contraction of Achilles for 8 months.

No word yet from surgeon.

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on December 13, 2014, 09:16:56 PM
12/13 - My new podiatrist never asked for the x-ray at my last appointment and with the disaster of the MRI fresh on my mind, i totally forgot that i had x-rays done for him. i made copies today of the CDs and reports from the late July x-rays i had done at C-P and the more recent ones i had done in November so that i could mail them to his office. i had not realized that there were separate x-ray reports for my foot and my ankle for the xray done in November.  I had only read my foot one previously. In July the x-ray I had showed no bone changes at all in my ankle. The ankle x-ray in November says shows slight osteoarthritic changes; there is slight osteophyte formation and sclerosis. So, along with my foot now having deformed to cavus - with too high arch, clawed toes, and pain in ball of foot and instability in heel, my ankle is starting to show early signs of osteoarthritis.

Maybe seeing how quickly the changes have happened will get him to hurry and schedule surgery
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on December 24, 2014, 03:55:46 PM
12/24 -I spoke with podiatrist surgeon last week. He had not received the x-rays that I mailed him. He said that the mri  radiologist was not seeing tears in retinaculum and agreed that scar tissue may have "healed" the retinaculum too loosely so all the tendons were bowstringing. He thought that releasing my Achilles' tendon would help with the pressure in my leg and foot and when he did that he could explore retinaculum and tighten it if needed and clean up any of the new arthritis in my ankle. I reminded him that I had given him the cell phone number of my OS who could tell him exactly where he incised the retinaculum when doing the fasciotomy.  I was able to email the xrays to him Friday, and was told by his assistant i should hear back on Tuesday, but have not heard back. Based on past encounters with surgeons, not sure if he has run.

I just emailed my OS about seeing a vascular surgeon at his hospital to discuss possible elective amputation. If the podiatrist will try to help, I will let him, but losing hope. The OS wrote back right away with a surgeon's name to call for a vascular workup and said he would call him to tell him about my case. Maybe he would either have a new way to try to stop CS (the CS expert Turnipseed is a vascular surgeon) or could help me understand when it's time to give up.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on December 27, 2014, 06:04:53 AM
I'm just trying to put together some info from research, blogs and personal accounts that I have read, to try to understand any relation to my own situation. I apologize if this is rambling or unclear. It helps me organize my head to write it out.

I read an article on a patient that developed compartment syndrome  in his leg after a baker's cyst burst following a non-surgically treated ACL tear. ( That is interesting for two things. First, I developed a a giant grapefruit size swelling (seroma)over my knee three weeks after my ACL replacement surgery that had burst, before i could get a a response back from my OS who had lost his pager for the weekend, and dumped fluid into my leg starting this whole compartment syndrome mess. I never heard of an account before that so closely matched mine. I had always received strange looks from doctors when i explained the fluid dump causing the compartment syndrome. The article also said the patient was more susceptible to CS since he was taking ibufrofin, a NSAIDs. "Acute compartment syndrome is most commonly associated with extremity trauma. However, acute compartment syndromes induced by medication or concurrent disease- induced bleeding have been reported in the literature."  I had previously figured out that the beta- blockers that I was taking since shortly before my ACL surgery had caused an increase in scar tissue formation in my knee  and the arthrofibrosis in my knee had stopped  when I ceased the medicine. I have taken Advil Cold &sinus since before my ACL surgery for sinus allergies that I  have. I still take this medicine with the ibuprofen part helping with pain. "The patient in this case report was taking ibuprofen, an older NSAID with both anti-inflam- matory and antiplatelet effects."

One blog I found is a compartment syndrome blog from NZ which has personal accounts and stories attached to it. ( Of interest, is that one of Dr. Turnipseed's patients post there. (He's the CS guru from Wisconisin) His patient has had 6 compartment releases. I'm still ahead of her in numbers, but she is close. That fact is not to knock the surgeons, but to show despite surgeon's technique and skills, something outside of the surgeons is causing the CS to return.

-Her post-surgical experience is so familiar "My last one I felt pretty good for about 1 month then started to experience the same, just not as bad, but bad enough where standing at work all day is very painful." I also have symptoms return in about a month after having felt great immediately out of surgery.

-she states that she takes "aleve , tramadol and norco qd and have since before my 1st surgery in 4/10. The tramadol really helps for a few hours, sometimes need to take an extra then norco after work." And "I take 400mg ibuprofen q morning and 2 tramadol in am, aft and 1 in pm most days, and take hydrocodone 5/325 after work and have for almost 2 yrs." I only get near the percocets when the pressure and pain is really high. I mostly rely on ibuprofen for pain relief. I have always gotten off of crutches w/in days and switched from narcotics to NSAIDs quickly. Not sure if relates to above article and NSAIDs may be contributing to CS return. All meds are stopped leading up to surgery.

- she writes "He (Dr. Turnipseed)did find that people with CCS, also have venous issues as well, he said he sees it all the time in these young kids, Im in my early 50′s and also have Reflux of the deep vein in my left leg but not in my right leg, even though it aches and does get cramps in it. Also just waking up in the morning, my legs ache." My sports Med Doc had found that the vein in my left leg is enlarged and had come up with a proposed diagnosis of venous compartment syndrome. Many recurring CS accounts referenced, swelling,non-pitting edema and excess fluid in leg. Before I started using the foot vibration massager, my leg was swollen thickly with fluid. I have also developed numerous seromas and hematomas. Unfortunately, on the nights that the CS pain was the worst this Fall, I used Percocet to pass out through the pain rather than the massager. Not sure if it would have made a difference and have saved my foot going cavus.

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on December 29, 2014, 04:48:59 AM
I sent the following to a friend earlier today. It is my best guess of what I am dealing with now.
All contribute to the CS pressures that were at CS levels since May and have become higher and more damaging.

A physical injury from last year's fasciotomies - retinaculum tear, that causes pain in tendon and muscles from lack of support and lenghtening/weakening of the extensor tendons in front of leg, which has caused the muscles in the back of my leg to contract and physically shorten (Podiatrist may address this by lengthening Achilles' tendon and reconstructing retinaculum)

Scar tissue- compartments have reclosed and now have CS pressures again. Scar tissue has also "healed" the retinaculum tears together but too loosely. (Podiatrist might address retinaculum tightness, also hoping that if muscles aren't constantly in contracting state that pressures in closed compartments may not be as high)

Cavus foot - new physical deformity problem from untreated compartment syndrome in back of my leg. Hoping that Podiatrist's tendon lengthening and retinaculum repair will reduce CS pressure by reducing pull of Achilles and also with retinaculum repair, help my foot not fall over. Want to stop CS so might be chance that bone changes are not permanent. Foot is painful all the time now. Stop progression of arthritis that started within last 5 months.

Venous - leg still does swell and ultrasound had shown enlarged vein. The foot massager definitely help with circulation (when I use it), but although I no longer have fluid pockets or non pitting edema all the time, my leg swells if used too much. After fasciotomy - lack of calf pump system can occur, but my compartments are sealed again so that shouldn't be my problem. Lack of activity trying not to bring on CS doesn't help. I don't think fluid is the main cause of CS, but a contributing factor.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Lottiefox on December 29, 2014, 09:40:43 PM
Hi Kristin

I don't think any of that is rambling or unclear. It summarises things and allows you to put forward your current situation. I so wish I could check out your diary and see that you've found someone to work with you and assist you. I dread to think what might have happened had you not been as resourceful and tenacious as you have been in your search for a solution. I saw your comment about elective amputation - is this something you have/are considering? I only ask as I have a friend in the UK who has gone through this recently after many many surgeries on a congenital foot issue that not only resulted in CRPS (which in itself was hideous) but left her foot and ankle useless. After a lot of research and counselling she underwent a below knee elective surgery this year and has not looked back since (with no CRPS in surgery site - fantastic). I am only commenting on this as I know she would be extremely willing to answer any issues or even to help with possible current issues as she too had very unusual complications. (crps aside) I don't think she would see what she did as giving up - rather the opposite. Absolutely horrendous thing to even be considering and talking about I know. I wish so much that you had never had all these complications. I truly hope and wish that 2015 brings you a resolution to this - you deserve to have a life without the leg and foot taking such a big part in it. Constant pain and restrictions get you down - hang in there.

Hope you don't mind me talking along the route of this reply - I am truly hoping for a surgeon who can get your foot and leg working again.

Lottie xx
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on December 30, 2014, 12:56:02 PM
Thanks Lottie. Amputation is something I have thought of before and am starting to look into the real details of more now. My husbands was horrified when I brought up possibility, so it is not going to be easy to get him to support me if I choose that route. I am waiting on the podiatrist's decision right now. If he will operate, I will try that first and see if by stopping the contractions in my muscles, I can get the CS pressure down. I will talk to podiatrist about the now presence of cavus foot and what he thinks future holds - fusions, more arthritis etc.. The concept is still really scary, but might give me chance at being active again. If I go more forward with this, I would love to speak to your friend.

Major concerns (many US insurance based) are:
insurance coverage for surgery and prosthetic
types of prothetics available financially with insurance help
in 40's now but what happens when skin thins and muscles age will prostatic use be harder/more painful as elderly
Will Medicare (US medical coverage for elderly) cover active prosthetics

If I meet with the vascular surgeon to discuss, it would not be to schedule surgery right away. I would do all the things I have held back on doing with my CS prone leg and take the heavy drugs at night to sleep through muscle death. My foot went cavus after just a few days of heavy leg use, so not sure how long I would have before CS destroyed muscles. I would want to do as much as I could walking, running, biking, hiking before I gave up leg.

I think it was late Spring when I talked to OS about fusing my ankle to try to stop the CS. He was horrified then. Now with all the foot & ankle OSs running scared from my case and the CS affecting my foot and ankle, he didn't hesitate to give me vascular surgeon name for amputation. I just want a life not based around protecting my leg all the time. I want to be able to work and play again.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on January 03, 2015, 02:20:57 PM
Hi Kristin,

Happy New Year if you can call it that after the last nightmare year you had to endure! I am sorry to see that you have reached the stage where amputation might be the only sensible option to take After watching the London 2012 Paralympics even with a prostrated body part or with no legs can take part in sporting activities again.

Of course it always going to be the last option to take that has been going on for a while now and will always have for and against going for the amputation option!

Hope 2015 is the turning point year for you to make the progress you been patiently waiting for that hopefully will soon to become a reality.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on January 07, 2015, 01:50:22 AM
Thanks Nick. I possibly might have found a way to try to save my leg.

Very bizarre situation happening, I hope it ends up being a good thing. I have been looking at compartment syndrome support groups to figure out how others are coping and what they have tried when fasciotomies fail. Yesterday I decided to join a random private group on Facebook and posted a summary of what got me to this point and what I had tried. Today I received an email  from the Wyoming doctor that does the Botox injections for CS, who apparently is a member of that board.

He said they did not have a record of me contacting them, so I explained how my OS had talked to him and how I never heard back when I sent info on trying to get procedure covered by insurance as injections for dystonia. He is going to have his assistant call me and said there might be a way to get me covered by insurance. I contacted my OS to let him know that the Botox doctor might help and to ask him if it make sense to get the Achilles' tendon lengthened ( and possible retinaculum tightened) as soon as possible to try to stop the foot deformity from getting worse and stop any increased pressure resulting from the muscle contraction before I try to look at the possibility of the Botox injections. He answered back that he was talking to the Botox doctor tonight.  I wish I could listen in.

I am still waiting to hear from the podiatrist on whether or not he will operate. He is at the office I go to on Wednesdays, so expect he will contact me then. If not, if the Botox doctor will help, I might try to convince my OS to lengthen my Achilles' tendon and forget about the retinaculum for now. Having gotten my head around the idea of losing my lower leg and wearing a prothetic, I really don't care as much now if  I need a orthotic on my foot if I can keep my leg.

1/7 - I spoke with the podiatrist's assistant and he said that he has agreed to do surgery on my leg and it will be scheduled for February. No date yet. I assume he is planning on doing the Achilles lengthening surgery but not sure if he plans to do anything with the retinaculum. Not sure which doctor, podiatrist or Botox doctor I should ask to slow down and which procedure should come first.

1/20 - unfortunately not much to report. I have not heard anything on scheduling February's surgery. I really want it scheduled so I know it will really happen. From what i have read, the Achilles surgery might be 4-6 weeks non weight-bearing. i need to prepare house if that is the case. Foot is still deforming from the acute CS episode - not sure why the foot surgeon did not brace or cast it. My guess is he did not quite believe me it was from an acute CS episode in October and not a gradual slow process. Been talking with other people who have CS that doesn't go away. Most are going out to Wyoming to the Botox doctor. He is the only doctor doing the procedure now. I have put the Botox on hold until I get my foot fixed.
Found this case I might send surgeon:
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on January 22, 2015, 08:39:40 PM
I finally have a surgery date set for March 4th. The podiatrist surgeon will lengthen my achilles tendon and try to tighten my extensor retinaculum where needed to hold the subluxing or bowstringing tendons in place. I'm still hopeful that this might be enough to stop the compartment syndrome. If not, once I am recovered, I will try the Botox surgeon's procedure. I sent my OS a note telling him surgery date and plan. He writes back "Achilles lengthening should help". He's such a frustrating jerk at times. I had tried early last summer to get him to lengthen my Achilles' tendon (didn't know about retinaculum then)and he had said no, that it would weaken my leg too much. Now, that I have a deformed foot and have wasted almost another year searching for help, the Achilles lengthening done by a different surgeon is a good idea Ugh. 

I have to figure out how to be non-weight bearing for 4-6 weeks while my Achilles' tendon heals. The surgeon will make 3 small cuts in the back of my ankle and will then cut through alternating halves of the tendon and stretch my foot up to lengthen tendon and get my foot to dorsiflex further. (Not sure how much will he cut to repair retinaculum at sides and front if ankle) I will then be in a series of opened and closed casts for 4-6 weeks.  I've always been weight bearing as tolerated and ditched crutches as soon as possible. Stairs will be the biggest obstacle. With an ankle injury there are more non-weight bearing options than with a knee. I am starting to look at knee scooters and the iwalk peg leg
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on January 28, 2015, 02:57:05 PM
I'm just catching up on your recent posts...I'm really glad that the podiatrist came through and that you've got a surgery date set, but how incredibly frustrating on the comments from your original OS! I really hope that this will end the cycle of compartment syndrome and damage.

The iwalk leg is really interesting - I hadn't seen one of those before. Great idea if the injury or surgery is below the knee. I wonder how easy it is to walk with, and if it would become uncomfortable after too long? But certainly way more convenient to have your hands free.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on February 03, 2015, 04:11:00 PM
Hi Kristin,

Also having a catch up on your post op diary and glad to see that something is finally happening that's been at a standstill for some time now and have are now finally making some progress. At least you podiatrist is on the ball and knows what he is doing which is more than can be said with the comments your OS has made.

You foot and knee problems have been going on for a while now and do hope that the surgery on March 4th does benefit so you can return back to some normality. Good luck with your surgery if I do not post again before your surgery.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on February 17, 2015, 06:49:40 PM
Thanks Snowy and Nick- I haven't posted in awhile because there was not much new to report. I am in the process of getting all the pre surgical testing done so I can get sign off for surgery. I see surgeon next Wednesday to discuss surgery and rehab. Surgery is the following Wednesday. It had seemed so far away when he scheduled it, I can't believe it is in 2 weeks.

More of the ankle extensor retinaculum tore a few weeks ago while I was shoveling snow off driveway. There is now another tendon that snaps over a bone, and when I try to walk quickly my foot is floppy and i feel like I am walking with a swim flipper on it. The new tear has seemed to have reduced some of the pressure in my leg. Probably because there is not as much resistance to pull of Achilles. Pressure still hurts after too much activity, but just hasn't risen to damaging levels. I just finished shoveling again, so hopefully didn't just jinx myself with that statement.

My OS finally told me where he cut the retinaculum - only as extension of fasciotomy of anterior compartment. I felt great after that surgery before more of retinaculum tore way, so going to see if at all possible to not tighten that area as much as rest of retinaculum. I am guessing though  that there will be a band of something (bone periosteum, tendon, ligament or whatever body part he scavenged from my leg to replace/reinforce the retinaculum) around ankle and all will be tightened at same tension, but really don't know.

The cool pirate leg crutch had reviews that said leg would go numb at times from compression, so realized that it wasn't right for me with all the muscle compartment problems I have. I ordered a crutch with a leg rest built in ( It's advertised as being one handed and allowing stair use, but I will probably use it with another crutch for the first weeks and without a railing on the right side of our main staircase in house, probably won't work there. I think I am doing the very unglamorous way to get up and down the stairs on my butt. It will be a long 4-6 weeks.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on February 19, 2015, 04:32:59 PM
Hi Kristin,

I am glad your surgery date is not a long wait anymore and get to a point when you want to have surgery done ASAP if it is having a daily effect on your daily living.

The walking aid with the seat will come in handy post-op as you will need chances to sit down at times when walking as your ankle will benefit from the purchased crutch.

Good luck with your surgery and hope this time it works out ok for you.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on February 25, 2015, 06:21:22 AM
A long 4-6 weeks, but well worth it if it returns better function to your leg and stops the recurrence of the compartment syndrome.

Hard to believe your next surgery date is next week now. How are things feeling? How are you doing? The prospect of yet another surgery must be really tough, but at least this is a somewhat different approach that will hopefully lead to a different outcome. Thinking of you a lot as you get ready for this, and keeping my fingers crossed.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on February 25, 2015, 01:01:56 PM
Thanks guys. Dreading the surgery but hopeful that it may help. I see surgeon in a few hours.

I was messaging with a girl from the compartment syndrome Facebook group, last week and she was saying how her compartment syndrome problems started after her tendon started sticking out in her ankle. She thought it was an  ant tib tear caused by mechanical gait issues after break in foot

She sent me a photo and it matches mine! I was the first one to "diagnose" her with retinaculum tear despite her seeing doctors at HSS, C-P and NYU. (One online doctor had said retinaculum problem when she was looking for ant tib tear help) She is seeing my foot surgeon next week. She is also scheduled to see the Wyoming doctor for botox in next week. She will get that treatment the same day I have surgery.

More hopeful this retinaculum repair surgery might help me stop the CS. I kept saying since October 2013 that this CS was somehow different then what I had experienced previously.


I saw My foot surgeon today. All is good for next Wednesday's surgery. He was killing me though dislocating my tib ant tendon over and over to see how far he could move it. I wish he would have waited on that test until I was asleep.

Achilles lengthening - 3 puncture incisions and cut 1/2 way through in 3 places. Takes longer to suture this part than do operation.

Retinaculum - if intact/ scarred together and too loose, can cut apart and suture back together tighter. If torn then will most likely steal parts of tib ant tendon and recreate. Up to three incisions across front. Told him scarring not an issue so don't try to minimize. Figures that his surgery is the front and back of my leg, the only two places without scars now. Sounds like they will be horizontal too. Oh well, a functional leg is what's important. Said his fear is that CS returns so have to try to get everything not too tight or too loose. He said that is the art of the surgery. An hour and a half probably of surgery.

4-6 weeks nonweightbearing. Non hard cast at first and hard cast in 2 weeks. Maybe PT after 6 weeks.

He can clean up any of ankle bone spurs, that started forming after October's compartment syndrome episode, during this surgery, but said I will need additional surgery to realign my foot from the cavus deformity that happened after the October CS too. He wants to see what my foot is like after the Achilles is lengthened before he decides what needs to be done.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on March 03, 2015, 05:42:59 PM
Hi Kristin,

Good luck for tomorrow I hope you can finally end the nightmare that you had to endure for some time now and have finally found the right type of medical team to hopefully sort out your ankle/foot problems.

It sounds like a fairly lengthy surgery and hope that the GA does not have too many side effects being under for longer than a standard routine surgery.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on March 05, 2015, 05:38:53 AM
I've been thinking of you today - I so hope everything went well and that you come out of it in a better place. You're right, a functional leg is the important thing. I'm really hopeful that this will be a turning point, and that even if you do face additional surgery to realign the foot that you're done with the awful cycle of returning CS. I know this is going to be a tougher recovery than previous surgeries, but I am really hoping that it will be worth it in the longer term for your leg.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on March 05, 2015, 04:37:26 PM
Thanks Nick and Snowy for the good luck wishes.

I think the surgery went well, but was a bizarre experience.

The local hyperactive podiatrist that referred me to operating surgeon was assisting, along with a resident. They were way too excited about my ankle and tendon and started pulling cameras out to take pictures of the tendon. The resident for some reason thought it was cool to sign my leg by signing one letter on each toe. In next curtain was an 80+ yr old retired OS in for some kind of block that was providing the entertainment with his angry rants when his surgery was postponed for several hours and told wife would have to drive him home after he ate toast and had several cups of coffee before driving himself to hospital.

The Achilles lengthening part I was told went well and was as expected. The retinaculum part they were all so excited to tell me about in post-op. Apparently  the retinaculum was completely intact under the tib ant tendon and I believe they said other extensor tendons as well. They were insisting that it must be the way it genetically was and I had always been like that and tendons must have been held in place by other soft tissue structures. I tried to get them to listen that that condition had never been seen at other surgeries or mri scans and OS had personally cut through retinaculum himself, but I crazily heal together all fascia and previous incisions/tears can't be seen in leg fascia either. They wouldn't listen so at some point a dumb paper will be written stating my extensor tendons naturally grew outside retinaculum. They did cut retinaculum and reattach ends together with tendons underneath the retinaculum.

I had told them pre-surgery that nerve blocks do not work on me (epidural failed, post ACL nerve block failed and first podiatrist surgeon used an insane amount of anesthetic directly on nerves guided by ultrasound last Spring but couldn't numb foot). They apparently did not believe me and used nerve block and lightened anesthesia at end. I have no memory of it, but I started waking up , blood pressure skyrocketed and I moved my foot while still opened. Their only reaction was that it was cool to see tendons all staying in place and never considered fact that nerve block might not be working as I had warned. Thinking I must have been given pain meds in IV that just hadn't kicked in yet, I declined Percocet pill in post-op so I wouldn't fall asleep again,  so first pain killer after surgery wasn't until I got home. Ugh.

At least the actual surgical procedures seemed to go well. I won't know for weeks until casts off and I can use foot.

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on March 11, 2015, 04:37:09 PM
The first week after surgery is over. Only 3-5 more weeks before I can put weight on my operated leg.

The first few days were complete agony even with pain meds. Every time I would get up to use bathroom, my leg and foot would painfully spasm. Worse than normal blood rush. I started using walker for more stability since I thought I might pass out from pain a few times. Thankfully by about the third day, the spasms stopped. I am still mostly just resting leg, but pain is minimal now.

I saw surgeon today for first post-op visit. He is very happy with surgery. Said all my tendons had been shifted around so much with the medial tendons all shifted to center of ankle and where he thought each tendons was located from external view turned out to be completely different tendons inside. Said it was an Anatomy lesson locating retinaculum under tendons and then finding and naming each tendon and putting back in place. He said they were all shifting around so much when they moved my foot it explained why I got so much blood bruising and pain in my ankle. When I started waking up towards end of surgery they could see all tendons now stayed in place when I moved my foot. He cut retinaculum on medial side and reattached with all extensor tendons underneath. I guess it is good I ended up with a surgical professor and not just general foot surgeon whether MD or DPM.

He said when he made first cut in my Achilles he could immediately see my big toe relax and not be pulled over any more. I guess it was an extreme instant reaction. He said I desperately needed that released as was very tight. He said that should make a huge difference.

Stitches in for at least another week, but put me in a removable boot that I am not allowed to remove. Can pump and deflate air bladder around it. Does not want me in cast because of compartment syndrome history. Still saying total of 4-6 weeks non weightbearing and then PT. Very sore and hard to move ankle when he removed soft cast and put me in boot. Not much swelling, fluid or bruising at least yet.

I told him what OS had said about retinaculum being over tendons during fasciotomies. Surgeon said he had sent out a tissue sample that came back as scar tissue, so it would make sense that it scarred together.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on March 12, 2015, 04:35:02 PM
Hi Kristin,

I am glad the surgery went smoothly with just over 1 week post op going to be feeling a lot of pain and discomfort still that should slowly ease as the weeks pass by. None weight bearing for 4 to 6 weeks should hopefully go quicky.

Clearly your OS could see that you were well overdue for the surgery, it s a shame you could not have got the surgical procedure done earlier on your ankle/foot. At least it done now and had an expert OS which is always adds reassurance pre-op.

I am pleased  that you had your surgery done by a professor that My OS is now categorised under that makes me feel more relaxed. By knowing that I had found an excellent OS when I 1st met my OS knew that he was a top OS that can hopefully sort out my ongoing right knee problems.

Hope your recovery period goes as smoothly as possible by not experiencing too much pain and discomfort post-op and that the surgery has been a benefit and work out well in the long run.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on March 18, 2015, 06:34:26 PM
I just saw my surgeon  he is a podiatrist, not an OS,  that is a professor at major podiatry school in NYC) to get stitches out.  I no longer have bowstringing or subluxing tendons. My achilles is also still intact. He gave me a clearer explanation of what they found during surgery.

He found the top level (superior) of the extensor retinaculum, that everyone agrees had been cut, balled up in scar tissue on the medial side of my ankle. He took a sample and lab confirmed the scar tissue.The lower level (inferior) extensor retinaculum was found intact under my extensor tendons. It does seem genetically that I have a screwed up foot anatomy.  So, when  the superior extensor retinaculum was cut during the fasciotomy, there was nothing left to hold my extensor tendons in place.  Surgeon says he has never come across or heard of that before. He asked if prior Foot Surgeon could have cut through inferior retinaculum during Tarsal Tunnel surgery, but that surgery was after my tendon started bowstringing.

I couldn't understand why I kept reading of cases when superior retinaculum was cut and there were really not that many issues other than cosmetic, and I was in so much  pain and was so disabled from it. That explains a lot.  He said it probably is the same in my right foot, so I have to make sure superior retinaculum never gets cut in that ankle.

I can start taking boot off and moving ankle this week and next week progress to writing alphabet with foot. I see him in 2 more weeks and he thinks I will be ready to start PT then. Two more weeks and I can try walking. I really want to start moving so I can figure out if this has stopped the CS pressure.

Diagram of ankle retinaculum is here
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on March 24, 2015, 05:54:35 PM
I see my foot surgeon tomorrow so he can check if my Achilles' tendon has possibly torn. On Sunday, I went to clean up the kitchen using a kitchen chair to kneel on. I am still non weight-bearing. Unfortunately, I only had my knee above the boot on the chair and not my entire lower leg as I usually do. I swiveled to take something out of sink to put away and fell of the chair backwards landing on the boot heel of my leg I just had surgery on. Intense pain that felt like I was being stabbed in Achilles that lasted for a few hours. Pain is minimal now, leg swelled a bit but almost no bruising.

As part of last surgery, he had lengthened my Achilles' tendon by cutting it halfway through in three places and stretching out the tendon. The tendon was left in this partially torn state to heal (no sutures) and puncture incisions were closed. I am hoping that the boot and ace bandage wrapped around my ankle may have protected tendon, but not sure. I was over half way to weight bearing, I really can't imagine another possible  surgery and starting non weight-bearing all over again.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on March 25, 2015, 05:29:51 AM
Yikes. I read your March 18 post and was really excited by what you'd discovered and the fact that you finally seem to have a surgeon who's willing to acknowledge that you're in a unique situation and who was prepared to do what was needed to address that. Then I read today's update and now I'm keeping my fingers so tightly crossed that you're not looking at a further complication. Overall, the news has been so positive since the latest surgery. I really hope that you're spared a setback at this stage - I know it would be fixable, but beyond frustrating to have to go back to step one all over again.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on March 25, 2015, 04:24:24 PM
My Achilles Tendon is not torn!!! I can't believe I actually caught a break with this leg. I have had so many complications, but this one would have been horrible since it was my fault if my fall had ruptured the tendon.

He checked tendon and had me move my foot and press down into his hand. He said it has not ruptured and I have good range of motion from doing exercises. He said I can start with doing alphabets with my foot today and next week can start partial weight bearing. I go back again two weeks.

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on March 29, 2015, 06:07:17 PM
That's a huge relief! So glad that you're starting to see some light at the end of the tunnel on this one. I hope that the return to weight bearing goes well - it must feel like you've been on crutches for an eternity at this point.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on April 06, 2015, 05:04:47 AM
Thanks Snowy. I still am so relieved achilles didn't tear.

Started partial weight bearing using crutches last week. Strange nerve pins and needle feeling in heel when weight is on bad leg. Felt like I had stone on foot below second and third toes for first few days. Still working on ROM in ankle. There is a spot on medial side of front incision that keeps scarring up and tightening. After initial passive stretching with tearing pain, I can start moving ankle more. Still bruised and very stiff, but not overall very swollen, but ankle is thick. I stopped doing, or trying to do, alphabets with foot because there is at least one tendon snapping /subluxing on the lateral side when I tried to make circular motions. Sticking to stretching in all directions and diagonals. I see my surgeon on Wednesday so will ask him about snapping tendons then. I have low grade fever that flares up to over 100.4 the last few days when I do too much. The Tib ant tendon that was bowstringing pre-surgery is still being held in.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on April 08, 2015, 09:03:51 PM
All is good still. I saw my foot surgeon today. Cleared to start full weight bearing with boot on this week; next week can take off boot and use sneaker and start sleeping without boot on. I see him in 4 weeks and can try barefoot close to that appointment. He gave me PT script, but said not to let them push me too far.

I asked more questions about surgery and he clarified what he did. He found the superior extensor retinaculum that OS had cut, balled up in scar tissue and did NOT reattach that band, but cut it out and removed it. He then cut both bands of the inferior retinaculum  which had grown positioned under my extensor tendons, and reattached those over my tendons. I was actually very glad to hear that he had not reattached the superior retinaculum since I was afraid that would cause the compartment syndrome to occur again. I still think that fasciotomy had finally stopped the CS before all the bowstringing etc. started and raised the pressures again.

He said everything is looking good and I am in the home stretch now.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on April 20, 2015, 03:31:54 PM
I'm really excited that things are sounding so positive for you! How are things feeling now that you're weight bearing?
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on April 21, 2015, 04:24:04 PM
Hi Kristin,

I am every so pleased for you that you are finally making so steady progress after all the problems and surgeries you have had to endure it most be a relief for you that you can share some positive news on your post op diary.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on April 24, 2015, 11:38:10 PM
Thanks Snowy and Nick. Sorry I haven't posted in awhile. This has been a painful and very slow recovery so far, but thankfully mostly good. I have been trying my best, outside of slamming my heel on floor at 2.5 weeks, to follow my surgeon's instructions and not to try to rush recovery at all. So much harder to hold back from trying things than to push forward.

I now am walking without crutches and have started PT.  I am still not allowed to put weight on foot without sneakers, so still have to sit in shower and put sneaker on before I get out of bed. I still am limping a lot, which everyone felt the need to point out to me last night at my son's basketball game, and have a lot of pain and swelling when active. The achilles only aches if I walk too much or do too many stairs. Good news is that so far even when leg swells, I have not felt the compartment syndrome pain returning. PT today was talking about the damage to my foot from the CS and said he thinks I will need corrective surgery to be able to be active again. He said he can't feel my spring ligament in arch of foot and is not sure if it is still present. He is helping me try to break up an area of scar tissue that formed on medial side of foot and to regain ROM in my ankle. I have some tendon snapping that he said could be extensor tendons snapping over end of tibia. So I still have a long way to go but hope the CS is actually gone. And all this from a torn ACL.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on April 27, 2015, 03:40:18 AM
And all this from a torn ACL.

It really does bring home how injuries can cause a spiral that goes entirely beyond our control sometimes. Your last post is slightly bittersweet - I'm really delighted that there now seems to be real hope that the CS is gone for good, but sorry that there might still be more surgery in your future to enable a return to normal. But given that you were considering amputation not that long ago, things have already come a very long way. Keeping fingers crossed for continued positive progress.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on May 07, 2015, 05:38:01 PM
Hi Kristin,

I am glad you are having the progress that you been waiting for and hopefully as Snowy has pointed out that you have seen the last of the CS returning. I hope you do not need to go through too many more surgeries as they are never a pleasant procedure to go through and recover from.

I finally know my MRI scan results on next week Wednesday and know surgery will be the only option left as my right knee pain is worse now then it was pre-op #1 & #2, so bound to do an exploratory scope again!

You right what starts of with a minor knee injury grows into an even bigger knee problem that impact other joints as well. My medial plica excision and fat pad trim has led to my right knee becoming a chronic knee condition that started with slight pain and catching on the lateral side of my knee! 

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on May 12, 2015, 08:56:06 PM
What has kept me going after this last surgery, especially when the pain was really bad, was the knowledge that my OS had a team waiting to discuss amputation if this attempt to stop the CS didn't work. Thankfully I do feel that it is a solution that I will not have to choose. My ankle and foot are still slowly recovering and I am getting more movement. I can go up the stairs normally, but do not have the ankle movement to go down yet. I met with my surgeon last week and no longer have any restrictions in footwear or activities. He did caution me to proceed slowly.  Have had a lot of swelling with increased activity, but still no sign of the CS returning.

Unfortunately, somehow I developed a new problem after the surgery. As soon as I was able to start ROM exercises on my ankle, I started getting a loud mostly painless snapping on the outside of my ankle. I had brought it up with surgeon at time but could not recreate it in his office. After last week's appointment, I was going down stairs one at a time, and the snapping of the tendon over the bone was really loud. Since then walking or stairs cause the snapping. Today walking barefoot before my shower caused intense pain as it felt like tendon got stuck on wrong side of bone. It finally relocated. I currently have ankle wrapped. Everything I look up on peroneal tendon subluxation states caused by tearing of that retinaculum or stretching of tendon. I was barely able to move my ankle when I first got snapping so retinaculum, different retinaculum from what I just had surgery for, should not have torn or stretched. i will either call surgeon or a Sports Med Doc this week.

Good luck at your appointment  tomorrow Nick. I realized that I was doing way too much nagging after your last surgery, trying to get you to slow down and do the patella mobilizations and AF slow rehab, so I stopped. You are obviously a smart grown man and capable of deciding what risks you are willing to accept in your rehab. I hope that Mr. Snow can help you figure out if another surgery or a controlled physical therapy session might be able to help with your knee pain.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on May 16, 2015, 04:40:37 AM
On Wednesday of this week my son had a lacrosse game at a school in a nearby town. It was a long walk down a paved walkway to get to the field, but I felt great walking down and up into the stands. Coming back up the walkway was a different story. Each step felt like someone had just shot a bb into my foot behind the lateral ankle bone as the tendons snapped loudly and painfully with every step. I was honestly afraid tendons would snap. I had a swollen egg shaped lump there when I got home. I called and got an appointment with local podiatrist for this morning.

Podiatrist agrees with me that it is peroneal tendons subluxing and gave me a name of brace to try that I could pick up at local pharmacy. It's an Aircast stirrup brace and goes under heel and up sides of ankle to prevent side to side movement. Immediately when I tried it, snapping got more frequent and I figured out it was the heel to toe motion, not side to side causing tendons to sublux. Went back to podiatrist and showed him how brace aligned foot perfectly for tendon snapping. He was going to call my surgeon to try to figure out what else, outside of surgical repair, might help. The Aircast can inflate more, so I will try making it tight tomorrow.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on May 16, 2015, 04:26:03 PM
Hi Kristin,

Sorry that you are still having on-going problems with your foot and ankle, I am not too medically minded with your problem of personal tendons subluxing, it must be extremely painful with your pain description of a BB gunshot each footstep.

I hope your podiatrist can ease the pain for you until your OS can check it out to see what needs to be done next. Thanks for your detailed and informative post on my thread, you are right I do not listen to my pain levels just try ignore. Thanks for the good luck message before my consultation with Mr Snow on Wednesday.

I just know in the back of my mind that even with a good PT and stronger quads a 3rd exploratory scope would not be a waste of time or out of the question as my right knee feels a lot worse off prior to scope 1 and 2. If I managed to get away Scott free without any excessive scar tissue, as we all know how hard AF is eradicate and control. I admit I did not do much PT post op and PM, I would be very surprised if my right knee has not got AF again! We all know MRI scans are not good at spotting soft tissue injuries and AF!

You are just concerned not nagging as you know what males are like when they have a health problem as we hope it will go away even if we are pushing our bodies too far.

Good luck with your appointment when you see your surgeon that never a nice feeling if you had so many surgeries already.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on May 20, 2015, 06:59:16 AM
The tendon snapping sounds awful. I assume there's a risk of damage if the tendons are continually subluxing? I really hope they're able to come up with a bracing solution or something else that doesn't require another surgery. You've been through enough at this point.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on May 27, 2015, 06:41:34 AM
I saw my foot surgeon today. He agreed that my peroneal tendons are subluxing and that there is not a brace or PT that can help. I am going to try the slim chance of custom orthotics, if insurance will approve,  but he did not seem very hopeful that this would help. I have to try.

He said my foot is badly damaged from the compartment syndrome last Fall and that the high cavus arch is causing the peroneal tendon problem. ( when he had me lie on stomach and bend knees, my husband was freaked out that the bottom of my feet now look nothing alike) Ironically, he says one solution sometimes used is to move the tib ant tendon more centrally to add strength to the lateral muscles to keep foot balanced. By fixing my tib ant tendon back to its correct position, this underlying peroneal tendon problem from the CS became obvious. He said to fix he would have to do the retinaculum/deepen groove/ bone fix for the peroneal tendons but also would then have to operate extensively on the front of my foot to try to counteract the CS damage and get my foot back into alignment. Lots of bone cutting and soft tissue stuff - I wasn't ready to hear it yet, so tried not to let details sink in. I probably will have to end up with this surgery at some point.

Nick- I am so glad to read that you are going to try the conservative route of strengthening your muscles to correct any possible malignment before rushing to surgery. We all want to hear of you back running again, but you have to take things slowly so hopefully you will be.

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on May 28, 2015, 04:49:48 PM
Insurance has approved the orthotics. I get casted for them on June 17th but am not sure how long it takes for them to be made after that. My surgeon is not optimistic that this will work, but with the alternative being bone cutting and tendon transfers, I want to try. I am nervous that I might not make it to orthotics before one of the tendons tear. My tendons sublux with 60% of steps down stairs and about 35% of normal walking steps and 100% forcibly at any speed above normal or any uphill incline.

Here is my ankle yesterday sfter I stupidly tried to keep up with husband who refuses to walk slower for me. There is a large egg shaped bump behind my ankle bone, around my tendons.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on May 31, 2015, 09:22:43 PM
I think it took my orthotics a week or so to arrive after the casting - it was pretty fast. I really hope they work, and it definitely makes sense to give them a shot before moving on to what sounds like a pretty unpleasant surgery.

Is the lump fluid building up around the tendons from the subluxing, or the tendons themselves? It looks very uncomfortable.

I guess it's not surprising that the CS left damage in its wake, particularly given how many times you had the pressure go back up again, but it's really tough that you're looking at yet another possible surgery to correct it. I'm sure you'd be happy never to see the inside of an OR again at this point.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on June 01, 2015, 03:12:51 PM
Hi Kristin,

I am sorry that there maybe another possibility that you may require further surgery! I hope as Snowy has already pointed out that the orthotics works so you do not need to end up again in the OR, you will try to avoid that this, that you will opt for as the last resort!

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on June 01, 2015, 09:24:05 PM
Thanks Snowy and Nick for caring.

I think the lump in the ankle photo is a combination of fluid from inflamed tendons within the tendon sheath and also inflammation of the area around the bone as the tendons are snapped back and forth through the soft tissue there. Hopefully the tendons have not started to fray or tear yet. The snapping has become almost constant, although the intensity varies by activity.

My foot was normal shape until the CS episode last Fall when there was no one willing to relieve the pressure and I finally lost the CS battle I had fought for years. If it wasn't for that episode, I think I would be done with surgeries. I am not sure if this photo is clear, but here is the bottom of my feet non-weightbearing. The flat relaxed foot is my good normal foot while the twisted hard looking one is my left damaged one. The proposed surgery to foot if orthotics don't help, in addition to peroneal tendon/retinaculum surgery, would be to try to untwist foot by cutting and realigning bones to get the front level and the arch lower again. He said my front foot is rigid snd filled with scarred muscle.

I might call the surgeon's office and ask his opinions:

1) if tendons now snapping with each step, is there much hope that even with orthotics to level foot, that the retinaculum is still attached enough or not stretched out too that it can still hold the tendons in so they do not sublux again?
2) if answer to #1 is NO, then would having just the peroneal tendon/ retinaculum part of the surgery combined with orthotic use be enough to hold in tendons? Will any barefoot walking without orthotics cause tendons to sublux again?
3) if I have to have a surgical procedure to fix peroneals subluxing, does the chance of surgery combined orthotic use give a high enough chance of success without having the foot realignment surgery, or does it make sense to have all proposed procedures done at same time so there will be only one risk of surgery/anesthesia, one long nonweightbearing recovery period, one cost and possible earlier return to life?
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on June 20, 2015, 04:31:48 AM
Just wanted to give a fast update. I did have the casting for orthotics this past Wednesday. I was told that although the orthotics were approved by my insurance there is usually a sequence still of denials and appeals and it will most likely be a little over a month before I get the orthotics. I tried to discuss orthotics vs surgery with surgeon, but he was there to do casting and wouldn't really discuss. If tendons still snap with orthotics, he says I will need surgery. With one month until orthotics, another month at least for breaking in and trials and if not effective another few months to schedule surgery, not sure if surgery is a real possibility for awhile unless tendon ruptures. I can't sit around not working for that many more months so have to start trying to work again. If I do start working, I would have to wait at least a year for an elective procedure that requires weeks of disability out of work. Surgeon still not very optimistic that orthotics will help.

Tendon still loudly snapping when I walk. My ankle has in last 2 weeks started rolling to the outside and feeling unstable, I asked surgeon which was worse, to fight the instability and keep ankle straighter which causes sharp constant tendon snapping or to let ankle roll over and he said to let it roll over for now. Get large rounded swelling most days over tendons behind ankle bone. The muscles associated with those tendons feel strange. Achy, almost tingly at times, but still different than the crushing compartment syndrome.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on July 04, 2015, 06:10:02 AM
I can't even imagine how frustrating it must be to go through the whole process with the orthotics knowing that it isn't all that likely to help. How long can you afford to give it before you'd have to go back to work? It doesn't sound like the tendon would last if you had to just push through for another year. It can't be good for it to go through the constant snapping.

I really hope things move forward a bit quicker than the current projected timeline.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on July 27, 2015, 04:48:46 PM
It has been well over a month now and still no orthotics. I think I'm just giving up until the tendon eventually ruptures whether it happens later today or years from now. This surgeon is the only one willing to help, but is just way too busy. Even if I get the orthotics soon, I have weeks of trying to wear them and if don't work, as he expects, I have to then wait for appt and try to schedule surgery. Last time it took about 4 months which will bring me to next calendar year with thousands again in deductible. I would need extensive time off work for recovery, which wouldn't go over well at new employment. Just can't do it. Taking certification testing in September and have to take any available job after that.

Ankle and foot are painful. It hurts to walk even on flat surfaces and stairs are tough. In bad leg, heel hurts, tendons snap and tendons in toes aches. Achilles and leg muscles hurt at times. No CS, but the damage from the last CS that no one would help with, has made me more crippled than before. I no longer have a strong leg and try to walk as little as possible. Good leg, achilles and heel now hurt from compensating. I'm stuck looking for desk job work since I can't walk without pain.

I'll update again if I ever get the orthotics or surgery, but am expecting that the current state of pain and disfunction from the CS foot deformity is my new life. I tried hard, but ultimately failed to find a surgeon that would help in time.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Chester57 on July 27, 2015, 09:36:21 PM
And a big "Thank You for Nothing" goes out to "Sybil", as well as to the other imbeciles involved in this fiasco. Disgusting and disgraceful is all that can be said for it.

You certainly couldn't have done any more than you did.  Hopefully, if it does go, the current surgeon will step up to the plate and do whatever it was he was going to do before deciding to settle on trying orthotics.

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on July 28, 2015, 05:26:36 PM
Hi Kristin,

Sorry to hear yet more sets backs for you after all you been through and have had to endure. The least they can do is speed up getting costume made orthotics, that would be of a great benefit to you. It can take up the a year plus on the NHS from 1st appointment to getting the orthotics that not of are not great of a long lasting durable quality.

I am sure you already looked into other hospitals or osteopaths that provide costume made orthotics quickly that costs money. I assuming that you cannot get the insurance if it a pre-medical existing condition. My right knee injury would not be covered be private health insurance.

I hope your surgeon can help you out more speeding up the orthotics or surgery if that the only option to go down. If you are in severe pain then you should be a priority with your long history of foot and ankle problems.

Good luck with what is decided next with your surgeon.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on July 28, 2015, 06:58:03 PM
 I unfortunately am not looking at a setback on the way to fixing my leg. I failed at that effort. The muscles in my leg and foot are permanently damaged beyond repair from the compartment syndrome pressures and I have zero chance of recovery. Best I can hope for is a salvage surgery in which the surgeon would cut the bones in my foot to reconnect them at different angles, and transferring of the tendons in my foot to different locations to try to limit the pain and disability. It is a surgery with no guarantees that it will help, so once I had suggested orthotics, my current surgeon decided that I have to try them first. Neither of us think they will work.

Insurance in US is different than NHS. The speed of orthotics being delivered is mainly by who your surgeon contracts with and if the surgeon's office has to wait to get insurance to sign off. Most people I know had theirs within weeks. Not sure why mine are delayed. At the beginning of each calendar year, I have to pay a deductible, or amount of money before insurance will start helping with bills. After that insurance pays 70-80% of expenses for surgeons or doctors that do not have a relationship with the insurance company, and 90% of expenses if the surgeon/doctor has a relationship with the insurance company (in-network) where they agree to keep charges in certain ranges. The insurance company has an out of pocket maximum, which means that the patient will not be charged anything once the patient has paid up to the out of pocket maximum amount for their medical expense  and all further medical care by any in-network doctor above that amount is covered fully by insurance. There is no pre-existing condition policy that applies here. I have met my deductible, so orthotics will be covered at 90%, and if I had surgery this year, i will have by then paid up to my out of pocket maximum, so would not be charged. Next calendar year, the deductible starts again and the balance paid by patient to calculate satisfying the out of pocket maximum go back to zero, so I would have to pay for surgery myself. Sorry if that explanation is confusing.

8/4 - I finally received a call from my surgeon last Wednesday that the orthotics were in, so saw him later that day. There is a slightly raised heel on the orthotic for my bad foot, the arch is much higher and an area is cut out so pressure can be taken off of the bone at the front medal side of foot. I have only worn them a few hours a day, per his instructions. My peroneal tendons have snapped while using them, not as often as in slippers or bare feet, but I think the raised heel is putting more strain on the muscles in the back of my leg - where achilles was lengthened and I have some muscle death/scarring which is causing the foot deformity. Not sure if they help more than just wearing regular sneakers when my tendons snap less too, but I need to try walking quickly and see if the orthotics reduce snapping then while sneakers alone don't stop snapping at faster pace.

I have to call the surgeon back in a month and let him know if they have stopped the tendons subluxing, even without shoes. I guess he hopes that the retinaculum over the tendons will scar down or tighten - not quite sure how this will happen when he says I don't have to wear them whenever walking and tendons snap forcibly with almost every step I take without shoes. I would think that would negate any long term real benefit from wearing orthotics. I asked him several times if I should basically live in them like I had to after my achilles surgery when I couldn't walk without shoes on for weeks, but he said not to wear all the time. If orthotics don't work, he said he would operate. He would repair retinaculum and basically sew my peroneal tendons together and have them both attach to the insertion point on the lateral side of my foot. ( usually after the tendons go together around the bone on lateral side of foot, they split and one inserts on lateral side of front of foot and one goes under bottom of foot and attaches by arch). He said he would also break the bone in front of my arch and cut and reattach it so that the height of my arch would be lowered. If every time tendons snap they might fray and eventually rupture, is it better to just get surgery now  rather than face the surgery and recovery when I am older?
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on August 06, 2015, 11:35:17 PM
My extensor muscles in my leg have been feeling strange and aching, and my arch has felt tight, but I thought it was from the constant subluxing of peroneal tendons and trying to get used to orthotics. Yesterday I looked at my leg and thought that the tib ant tendon seemed to be bowstringing more than it has since before the surgery. I am hoping that I am just being paranoid and over-worried. I'm afraid that the retinaculum repair has failed and my tendons are unrestrained again. I sent an email to my surgeon, but with my usual bad luck, he is away until Monday and unavailable. It's not an emergency situation because I think the lengthened achilles should stop this from progressing to CS again.

8/10 - the foot surgeon's office is open, but he is giving lectures all morning. I made a tentative appointment for Wednesday and his assistant is going to send my email with photo to the surgeon. She said he may not need to see me before surgery. My guess is that I will be sent for X-rays and maybe an mri right away so he can do the cavus foot salvage surgery at the same time he does the peroneal retinaculum and extensor retinaculum. If he waits too long, the retinaculum that just tore away will be too contracted or scarred to reuse. I'm hoping surgeon doesn't abandon me and will help fix this. Ankle is a weak mess. I told OS of retinaculum failure and he told me to see a foot surgeon that he works with. At least I have a possible name if this foot surgeon won't help. Sorry, Chris, I had to get a name from Sybil just in case, because torn retinaculum has only a short time left. The torn/stretched retinaculum might already cost me part of a tendon to repair.

8/16 - foot surgeon told me tendon unchanged. Wear orthotics for next few months. Basically, I have been blown off. Not a surprise, it seems to be what surgeons do when complications arise or surgeries don't work.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on August 16, 2015, 11:15:02 PM
So incredibly frustrating and disheartening. I understand that your surgeon is wary of doing something that he isn't convinced will improve the situation, but it also seems that they're not prepared to acknowledge just how significant the impact on your life has been and that you're prepared to take some chances in the hopes that the surgery will make a difference. Are you going to pursue seeing the second foot surgeon?
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on September 16, 2015, 09:46:37 PM

Sorry for not posting sooner. I needed a break from posting. Every time I tried to write something it sounded like all whining. No one needed to read that.

I have had a lot of pain from foot/ankle/leg. We were at my parents' house over the summer and my foot and leg would cramp so badly in the pool that I couldn't put weight on it. My peroneal tendons still snap over my ankle bone all the time even with the orthotic. Toes curled and burn when straightened unless foot pointed down.

I just met with my foot surgeon today. He now says he will do the surgery needed on my foot and ankle to reconstruct my foot from the damage caused by the compartment syndrome.. It requires 8-10 weeks of non-weightbearing after surgery because bones need to be broken and then screwed back together. He plans to:1)reconstruct the peroneal retinaculum which he says is now incised from tendons snapping, 2) repair any tears of the two peroneal tendons and then cut and transfer the peroneus longus to the brevis tendon fully to act as an everter and not a plantarflexor of the first ray. 3) perform a lateral calcaneal (heel bone) wedge osteotomy procedure to put foot in greater valgus alignment and increase the plantarflexed position of the first metatarsal 4) elevate the first ray with a dorsally based wedge osteotomy at the first metatarsal base. (cut bone by ball of foot to raise it up thereby lowering the arch) 5)stripping of the plantar fascia and possibly the plantar musculature may be necessary from the plantar heel.

Doesn't sound like a lot of fun. I believe it is outpatient surgery. I have a prescription to get X-rays of my heel bones from different angles. He said he would fit me in for surgery this year.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on September 19, 2015, 03:55:18 AM
You don't ever need to apologise, either for the delay or for venting. This is your life and you have every right to take a break, regroup, and only share what you want to share here.

That said, I am very glad to hear from you. I do think of you often and wonder how things are going. I'm so pleased that the foot surgeon is willing to proceed, though I wish a surgery - any surgery, never mind one this invasive - wasn't necessary. You've been through so much already. It does sound like he's willing to go all out to fix things, though, which is good. I hope this will be the last surgery that you need to go through.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on September 30, 2015, 10:34:46 PM
I checked in with my surgeons office today to see if he had reviewed my X-rays and if surgery could be scheduled. I received a call back from his assistant late today that the surgeon had reviewed my X-rays, but my case is a lot more involved than he had thought. I definitely need surgery, but he needs more time to review and measure angles of bones in xray to plan out what needs to be done. He said to tell me he will do surgery this year.

I thought what he had said he planned to do was already sounding pretty complicated, I'm scared to hear what new plan he comes up with. I had been kind of hoping he would say he could fix peroneal tendons without having to cut up the bones in my foot. I guess that is not going to happen.

Since my first ACL surgery, I have been with all top rated doctors, all of them team doctors to professional sports teams and with best doctor awards filling their walls, but somehow I am sitting her waiting to find out how my foot can be salvaged and trying to figure out why none of them would ever listen enough to help me.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on October 01, 2015, 11:52:25 AM
Hi Kristin,

It is good that your OS wants to carry out surgery this year rather than dragging it into the New Year. I know your ankle/foot surgery is a big surgery to be going through! You are bound to get pre-op nerves as you been through so many failed surgeries in the past!

It reassuring that you now have a good medical team trying to sort out how to go about treating your on-going foot/ankle problems. Surgery is not a nice procedure to be going through lets hope that this time round it is worth going through.

Good luck.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on November 11, 2015, 11:28:33 PM
Any word yet on a surgery date and plan? I'm glad that things are continuing to move forward, but I can't imagine the frustration at how long it's taken to get here. I've never known anyone work as hard at self-education and self-advocacy as you have, and you deserved a better outcome long ago. Sending good thoughts as always for the next step.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on November 12, 2015, 03:06:32 PM
Thanks Snowy and Clarkey.

Sorry I don't come on here that often. I really want this next surgery to try to preserve what function I still have left and to stop further damage - arthritis or further tendon tears, from getting worse, but I'm more just resigned to having to have a last-ditch salvage surgery so I can get on with life with a forever damaged leg/foot instead of being hopeful like in the past when if doctors had listened, I believe I could have had a limb that functioned almost normally. One of the hardest thing is, that despite the fact that I have obvious damage from the compartment syndrome pressures that no one would release for me, I know that these same doctors that didn't believe me then still won't believe me in future if the compartment syndrome ever returns.

No date for surgery, but a few weeks ago I was told he was trying to schedule for the week of December 7-12, most likely on the Saturday. I would be kept in hospital at least overnight. I am going to call Friday to see if date confirmed yet.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on November 13, 2015, 03:40:03 PM
Hi Kristin,

It sometimes a good idea not to come on all the time onto KG bulletin board as it only reminds you of your never ending problems. I hope you know the date of your scheduled surgery soon. It has been going on for too long now, I do hope the next surgery is a longer lasting fix then all the previous surgeries you have had to endure.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on November 17, 2015, 05:59:09 AM
I'm not a regular visitor either these days, but I do come back to check on your thread and a couple of others (Nick, yours included) to find out if there's any news or changes. I'm glad you'll be having the salvage surgery, but am more sorry than I can say that you didn't get the help you needed earlier. I really hope you're never in a situation again where you're having to try and convince sceptical surgeons that the pressure in your leg is rising to damaging levels.

I hope you get a date soon. I'll be thinking of you when surgery time comes.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Lottiefox on November 17, 2015, 09:25:23 AM
Kristin I am not a regular visitor either but I suddenly wondered what was happening on your leg. I am so sorry you're facing a salvage surgery and I wish you'd been listened to more fully over the past years. This kind of complication after complication is so utterly exhausting and I do hope, that albeit this is a salvage surgery, you can get workable leg function and manageable pain. I too will be thinking of you when a surgery date is set, so do keep us posted.

Sending positive thoughts for this next stage.

Lottie xx
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on November 17, 2015, 02:15:53 PM
Thanks guys for thinking of me. I did finally hear yesterday from the surgeon's office. Surgery is scheduled for December 9th at 11 EST. I will be admitted to the hospital that morning, but I guess depending on how surgery goes may either be kept overnight in observation or sent home.

From what I understand, I should be able to do low impact activities after this surgery. So I should be able to walk, hike and do day to day stuff without pain. That would be great. I wish I knew if the danger of doing more was pain or the screwed together bones popping apart. I don't plan on pushing it, but if I was to walk too fast to get out of rain, catch train etc., could my foot kind of explode? I have screws in bones now to hold ACL tendon in, but not to hold bones together.

I'm expecting the initial pain to be very bad. Two bones will be cut and screwed back together. Everything I read on calcaneal (heel) fractures emphasize the pain and I assume getting heel sawed off will be as traumatic. The peroneal  tendon fix/transfer will be soft tissue pain which will probably last longer than the bone pain. Hopefully bone pain while more intense, will end fairly quickly as bones heal.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on November 17, 2015, 04:44:58 PM
Hi Kristin,

Good luck with your scheduled surgery on Wednesday 9th December a week after my Birthday on December 2nd. Hopefully if all goes well 2016 will be the year you can get your life back to normality once again with your family.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on December 03, 2015, 05:30:06 AM
So glad you finally have a date, and that you'll be able to return to some of the activities you enjoy free from pain. I hope they'll tell you whether higher stress activity is a risk going forward - the prospect of a foot "kind of exploding" is very scary! I can't imagine anything that involved sawing bones is pain free, but after seeing a friend go through TKR with almost no pain I hope that they'll be able to give you a pain management regime that will keep things under control until your foot heals from the initial trauma.

I'll be thinking of you on the 9th.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on December 03, 2015, 01:09:11 PM
Thanks Nick and Snowy. I saw my surgeon yesterday, but was too tired last night to write up the appointment. Over Thanksgiving, I was able to talk to my cousin's husband who I heard talking to someone else about having 2 screws in his foot, he also happens to be a physiatrist- rehab doctor. He told me that once bones healed, there was no danger of having bones pop apart and they would heal as strong as normal breaks anywhere. He says he can do all except pounding activities such as long jogs on pavement. Even then, would only cause pain. So my strange fear of exploding foot can't happen.

My surgeon walked through what his surgical plan will be. He will do an osteotomy of my heel and shift it over slightly to take some pressure off of the peroneal tendons to help stop subluxing. He will use same incision to add bone anchors to tighten my peroneal retinaculum and after repairing any tears, will cut my peroneal longus tendon and sew it to the brevis. He does not plan on grooving the bone. He will then cut into the bottom of my foot and completely cut my plantar fascia off of my heel bone. He said just releasing that should help the cavus deformity drop down. That is the area of my foot were muscles died from the compartment syndrome and then scarred and contracted causing the bone deformity. I asked if that might actually fix most of problems without bone work, but he said after bones being forced into deformity for over a year, probably not. He will then access remaining cavus deformity and cut into top of foot over ball of foot and do an osteotomy there and possibly another a few inches further up on foot if still needed. He wants to admit me to hospital, but insurance protesting, so at this time he can hold me there for 23 hours so won't be admit, to get me some strong pain relief.

I will be nonweightbearing for at least 6 weeks. I am trying to get house in order, wrap Christmas gifts and wrap son's birthday gifts before surgery. I'm glad he is fitting me in for surgery this year gif insurance costs, but I hate December surgeries. He made a comment that he can't promise that I won't still need another surgery after this one.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on December 08, 2015, 04:12:39 PM
Hi Kristin,

It never a great time anytime of the year for surgery and December has to be the worst month of the year to have such a big and complex surgery that you will be enduring if you have a family to look after. My OS had mentioned as a last option doing an osteotomy on my right knee that is still not improving no matter how much PT I do for PFS!

It is a big surgery you will be facing and will be in the OR/OF for a lengthy time under GA. I researched it already and takes a time to do one osteotomy and your OS is talking about more than one osteotomy and possible future surgeries.

Good luck and happy Christmas to you and your family, you may not be in the mood to post so close to your surgery.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on December 09, 2015, 04:34:03 AM
Thanks Nick. The operating room has been booked for 3.5 hours, so it is a long surgery.

I have a half hour before it is midnight here and I have to stop drinking. I have to be at hospital at 9:30 for 11:30 surgery. (EST) I probably will be kept in observation overnight so won't post until sometime Thursday at earliest.

I hope you hear from your surgeon soon with the MRI results and a plan to fix your knee.

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on December 09, 2015, 03:40:42 PM
Hi Kristin,

Good luck with your surgery today that if I am right it is just after 15:30 in the UK so be 10:30 on the east side of the USA. 1 hour before your scheduled surgery slot and will be at pre-op right now getting ready for surgery.

Thanks for your message of support with my on-going right knee problems, hope to get my MRI result before the end of this week ideally, I will not get my hopes up too much. The NHS that are now known to be slow with the recent cut backs.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on December 12, 2015, 02:10:38 AM
Wow, that's quite the procedure. I saw on FB that you're out the other side - I have been sending you many good thoughts, and I really hope the recovery from this surgery isn't too lengthy or too painful. I also really really hope that you won't need another one afterwards. At least this time you have a surgeon who isn't afraid to take extensive action; that's a big change from some of your previous surgeries, and I hope bodes well for the outcome.

Take care and rest up as you start to heal.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on December 14, 2015, 05:06:22 PM
Thanks for thinking of me during this surgery. I ended up staying overnight in a part of the hospital that was definitely not staffed to handle someone fresh out of a painful surgery. (My roommate had surgery scheduled the next day but was getting blood transfusions throughout the night. She could get up walk to restroom herself, shower herself and walk to staff station if needed anything)  I got little sleep, did eventually get pain shots and couldn't wait to leave and go hom the next morning. I had to request a wheelchair to leave as the staff there thought I could just walk out.

Pain has not been anywhere near as bad as last foot surgery. It hurts and aches, but not as badly as it seems it should. Surgeon told my husband he was happy with surgery and had done everything he planned. Heel was cut and repositioned, peroneal tendon cut and transferred, bone anchors used to tighten retinaculum, bone at top of foot cut and repositioned to lower arch, plantar fascia cut off of heel bone, and an additional tendon needed to be lenhthened. I can't walk on it for at least 6 weeks as bone heals. It's going to be tough because level of pain makes me want to try walking on it now. It just doesn't hurt that badly. Taking Advil during day and Percocet at night.

I might rent a wheelchair so I can get out out to my son's games and concert. I would be afraid of losing balance on knee scooter in crowds of kids. A wheel chair could keep foot up when I get there too.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on December 31, 2015, 05:18:27 AM
When I saw my surgeon one week out of surgery, he told me that if my xray at 4 weeks showed my bones were almost healed, I could start weight bearing then. Unfortunately, when I saw him today at 3 weeks, he decided I can't put any weight on my foot until after X-rays at 6 weeks. Ugh, I'm only half way to walking.

He removed over 20 staples from the outside of my foot and ankle, more from the medial side and then cut sutures from my heel, top of foot and arch. I was bleeding a bunch from so many holes so I can't unwrap until Saturday when I can get foot wet and start to move it outside of boot, I noticed and he confirmed that tendons to my 2nd and 3rd toes are tight. Wouldn't discuss stretching or other treatment at this point. One staple radiated pain down to toes when removed and he said something about nerve in surgery. I have had pain on outside of heel for weeks which I blamed on staples, but now think is nerve that was hurt in surgery. Not constant or severe, just annoying.

Of interest is the different way that he, a podiatrist, treats scar tissue compared to orthopedic surgeon. When I had arthrofibrosis in knee, I had typical surgery where sheets of scar tissue were removed from my knee, I have also had scar tissue cut from around muscle compartments and nerves by orthopedic surgeons. Scar tissue didn't belong and needed to be cut out. This podiatric surgeon approached the massive amount of scarring in my foot a different way. He left it alone. His focus was to get my foot bones and muscles to work despite the scar tissue. Tendons were relocated and lengthened, bones were shifted and reshaped. It will be interesting in a few weeks to see how this approach works.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Scubagrl4 on January 01, 2016, 08:55:12 PM
Hang in there' you have been through so much, I'm sure you have completely had it with crutches and other assistive devices. Your continued efforts and strength in finding a solution for your problems has truly been inspiring. I wish improved health and comfort for 2016.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on January 07, 2016, 02:36:33 PM
Thanks Scubagrl14. I wish my ACL  surgery had been successful without complications and that I could gave found surgeons along the way that would have listened and believed me so that I didn't have to be the one always trying to figure out what was happening in my knee/leg/foot and what should then be done to fix it. I never wanted to read a zillion medical journals and research studies, and have to educate my own surgeons in what I learned and argue for treatment. Unfortunately as a friend pointed out this situation of dismissing a woman's complaints is way to common in medicine. She sent me this article, which although the disease the woman in article has is way scarier and different, the way she is treated is the same. Too many times I read posts here of male surgeons dismissing women by offering antidepressants, telling them pain doesn't exist and in one case I believe a woman was told to take up gardening instead of being offered treatment.

Here is article:

I was 4 weeks post-op yesterday. Nerve pain on side of ankle, a pinching sharp pain, is not as frequent. Foot has finally started moving a bit more side to side but still very stiff. I did feel something painlessly pop or jump several times in side of ankle where the peroneal retinaculum was put back in place with bone anchors. I am hoping so much that tendons are not still subluxing. The whole point of having my foot reconstructed was to stop the tendons from jumping. X-rays at 6 weeks to see if bones have healed enough to walk.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Scubagrl4 on January 09, 2016, 03:42:45 AM
I went through the same problem with my first doctor. To make things worse is that I worked for him for four years in the past before I became a patient. I really expected him to trust that I knew what I was talking about because of my medical knowledge and with him knowing my personality but no such luck. He just looked at me like I was crazy when I told him about how bad my pain was. Now I'm afraid that if I run into him around town I will end up in jail because I'm still so angry at the way he treated me. He even laughed at me when I asked him some very valid questions. I'm just so thankful that my new doc is completely different.
I am so glad to hear that your pain is improving and that you are gaining some movement. I also hope that the popping is normal post op stuff and that it isn't your tendons going crazy again. I'm sure at this point it is hard to even tell what you are feeling with everything relocated like it was. Hopefully the lack of pain with the popping is a good sign. I'm looking forward to seeing a post soon announcing that you can come off of those dang crutches. Wow do they suck!
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on January 09, 2016, 03:34:11 PM
Hi Kristin,

I hope you continue to see further improvements in your post-op recovery and hope that the x-rays show that the bone is healing well enough that you are able to fully weight bear again. It is nice to find a understanding OS that believes and knows you are in pain and how to go about treating it properly.

Hoping that 2016 is going to be a more positive year for you and your on-going foot/ankle problems. Thanks for supporting and advising me throughout 2015. Scuba and I understand the frustrations while going through a medical problem that is hard to get right again.

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on January 20, 2016, 06:57:14 PM
My appointment with surgeon did not go great. My heel has still not healed enough. Still NWB until weekend and then can tap boot on ground without weight using crutches for a week. After that weight bearing as tolerated. See him in 3 weeks. Might be walking in boot then.

Did not believe me I felt possible tendon snapping on side of foot. Said must be scar tissue. Unfortunately I couldn't get snapping to happen there, so he says doesn't happen or would have happened then. Also pretty much dismissed sharp pain in side of foot that I have had since week two. I think pain is related to boot putting pressure on something in foot. My guess is that there is a freestanding bone (oS Peroneum) in that area located in the peroneal longus tendon. This tendon was cut and sewn to another tendon. From the xray, the bone is now jutting out from side of foot, I think boot is pressing on that bone. Hopefully in a few weeks the pain will stop when I get out of the boot. I hope the pain doesn't happen in normal shoes.

The worst part of appointment was when he said he had thought my arch would havre dropped down a lot more than it had. Made some comments about tendons, spasms etc. I get the really bad feeling that once again a surgeon didn't listen to me and blamed the childhood stroke for the cavus and based his surgery on the 40+ year old stroke symptoms having a major influence on arch shape. He has my X-rays before the CS destroyed my foot and my arch was normal then, not sure why he thinks any after effects from a stroke would suddenly change foot shape forty years later. So he didn't make the bone cuts severe enough to drop my arch back to normal. Hopefully he did enough to help with some of the pain. So if tendons might still be snapping and foot is still cavus, what was the point of putting myself through all this?
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on January 25, 2016, 04:04:49 PM
Hi Kristin,

I am sorry that once again things are not going smoothly and are not being listened to again properly! It’s a never ending nightmare for you. Take one step forward then take 2 steps back again. I hope you are able still to salvage something out of your last surgery, so you do not have to suffer any longer unnecessarily.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on February 14, 2016, 08:57:47 PM
Busy week in recovery. I finally was able to put full weight on leg last weekend so now getting up stairs to shower is a lot easier. I've slowly stopped using crutches over course of week. I saw my surgeon on Wednesday and he wants me to keep using boot for at least another week and then switch to sneaker. I am to start PT to try to get more mobility. He was happy that incisions are healed and not much swelling. He is not convinced that snapping with weightbearing is the tendons subluxing but said we need to keep an eye on it. Surgeon did not check me weightbearing. Snapping feels the same now as did pre-surgery. He said he did not think during surgery that he had to cut a groove into the bone to help hold tendons in place, but maybe now I will need to have that done. I guess because my cavus was not corrected enough. I had to stand for about half an hour on Friday to get my son's passport paperwork done, and when I took boot off when we got home I had blood dripping from end of incision on outside of foot. It always hurts there.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on February 24, 2016, 06:00:44 PM
Hi Kristin,

I am glad you are now able to fully weight bear again and are able to have a proper shower once again. The crutches might come in handy still when you are having a bad knee day. The snapping sensation is never a nice feeling to be going through. Hope it does not require further surgery as you been through enough of them already. The bleeding around the incision does not sounds too good! Did you get it checked over properly afterwards.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on February 28, 2016, 04:07:30 PM
Thanks Nick. The incision has not bled since, so have not seen anyone about it. It bled from a small round hole, so wondering if internal hardware poked through. There is not much padding in skin below lateral ankle bone and I know he used bone anchors on retinaculum. Snapping has become worse since switching from boot to shoes. Foot only fits in crocs, foot to swollen for sneakers. Others in the room can hear snapping as I walk. Much stronger and more painful than before surgery. I have ordered a pillow that wraps around foot so I can hopefully sleep with less pain. I haven't been able to motivate myself to go to PT yet. I have been through it so many times and have done all the stretches etc. myself. I see surgeon in 2 weeks so have to go to PT this week. At least surgeon will hear snapping, but I don't know if I could handle 8 weeks NWB again after another surgery.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on February 29, 2016, 04:14:09 PM
Hi Kristin,

Sorry you are having yet more setbacks post-op with your ankle/foot problems with snapping sounds is not a sound one wants to hear. I hope it settles down soon so you can finally get your life back together again and several years of pain and discomfort and failed surgeries.

Cannot be easy not just for you but for your family and friends that are seeing you suffering unnecessarily with no end in sight. Hopefully your surgeon can sort it out swiftly with a minor procedure to fix it.

Good luck with your next see your surgeon, he will do all he can to sort out your ankle.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on March 16, 2016, 11:57:42 PM
Thanks Nick. I also didn't have the best appointment with my surgeon today. (I just responded to your post)  Although my ankle has the telltale signs of a golf ball sized swelling behind the outside ankle bone, I couldn't get the stupid peroneal tendons to snap over the bone during the appointment (it's not a party trick, I don't control it!!), so my surgeon is still not convinced my tendons are snapping. I get it, he needs to see the problem before he can operate, but this has been going on since I was still NWB and time keeps passing. I lost movement in my little toe which he thinks is from a nerve entrapped in scar tissue. He also believes that what I think is snapping tendons is scar tissue or scar tissue forcing tendon into wrong position. He told me he was going to do an injection today into my nerve and by my tendons. No way!! Besides my complete phobia of needles, I feel the tendons snapping which could cause fraying or tears and he wants to inject a steroid in there that can weaken tendons. We agreed that I would find a PT that would only work on any possible scar tissue from the surgery. I will also try to film my ankle when I feel my tendons subluxing over the bone so he can see and hear what is happening outside of his office. He also prescribed lidocaine patches for pain which I hope insurance will pay for.  I go back in 6 weeks, unless I am able to get video proof to him sooner that tendons are still subluxing. He is insisting that the next step is he gets to inject me twice.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on April 07, 2016, 01:35:26 PM
Still waiting for PT to start next week. Decided to wait for experienced PT so I wouldn't have to teach foot anatomy like I had to with my last PT. Peroneal tendon pain while walking has been bad. I can barely get up the stairs with horrible pain in my peroneal tendons as well as on top of foot. Top of foot pain and swelling seems to match what I found on Internet for extensor tendinitis.there has been a small bump in my tendons above my ankle bone. I still sleep with pillow wrap around foot.

Today I managed to make things worse, although I don't know what exactly happened or extent of injury. I was walking down stairs one at a time and "tested" my bad ankle on last step to see how much it resisted bending forward. Usually it resists and I go back to bad leg first down the stairs, but today it collapsed forward with a snap/crack. Intense pain and I haven't been able to put any weight on my leg since. Unfortunately, my pain meds and boot are upstairs, but I managed to find my son's old orthopedic boot from when he had sever's in his heel. Not sure if I call surgeon now or wait and see if pain settles down.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on April 07, 2016, 05:52:12 PM
Hi Kristin,

I can fully understand why you are reluctant to have further steroid injections in the fear that the tendons will suddenly snap! I am also thinking in the same way with my right knee problems, I will not accept any more steroid injections. The 3 last year did not help to ease any of the pain and discomfort.

It's very hard and frustrating to find an understanding PT that knows how to go about treating less common knee and ankle problems. The PT's I have seen so far have just added to my right knee problems not eased it in any way pushing me too hard. 

Hopefully the collapsing and snap/crack will gradually improve, might be a wise decision to get your ankle checked over by your OS. 

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on April 09, 2016, 05:04:17 AM
Thanks Nick.

I spoke to my surgeon's office yesterday and they wanted me to  get an xray today to see if I had broken any of the screws in my foot. I have had no bone pain so didn't think that was right, but insurance requires xray before mri request, so I agreed.

I was still NWB this morning, but tried touching my heel to floor and found that although I couldn't stand flat foot, I could stand and walk on my heel (in my boot). I went to my SportsMedDoc  and asked him if he would ultrasound my peroneal tendons to make sure no tear or rupture. He said he would do xray too. So, my screws are all still intact and unbroken and I have no tendon ruptures. My peroneal tendons are enormous when compared to my good leg and are filled with fluid, but still intact. I emailed copies of all scans to my surgeon tonight for his review. I didn't think of it at time, but I hope my surgeon can make sense of the ultrasound pictures and figure out if the peroneal retinaculum is still intact and tight enough. I see my surgeon Wednesday. I start PT on Monday, although  I am not sure how much I can do there.

4/13- I saw PT yesterday. She did a full assessment of lower body and took medical history. She said in 32 yrs she had not come across another case like mine, I assured her my surgeons had not either and that is why my leg is in the bad shape it is in. The joint in ball of foot is frozen. She planned on calling my surgeon to find out what she can and can't do along with I am sure checking my crazy medical history story. The PT dept at hospital also offers Graston and I think ART too ti try to break up scar tissue.

I saw my surgeon today. He was happily surprised with my latest X-rays in that the arch of my foot has fallen down a lot and is more close to normal. That might explain why my snapping tendons stopped when the pain in tendons increased. The lowered arch, from continued weightbearing stretching out tissues, would put less stress on tendons so they wouldn't snap as much over bond while the lowered arch would put excess tension on tendons when stretching if they were stuck in scar tissue in tunnel on side of my foot. My surgeon believes when my foot collapsed forward it tore the scar tissue out of the tunnel allowing tendons to glide again. The horrible pain going upstairs has stopped since the fall on stairs, so he might be right. I go back in 8 weeks unless something goes wrong before that. Tendons did snap over bone twice yesterday, do I still am not sure that problem is solved.

Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on April 15, 2016, 11:02:22 PM
I had not looked at X-rays side by side until the other night. I checked dates I had and realized that all the major bone shifting has happened within a month's time. I am concerned about the rapid shift in bones or if big toe joint ( by ball of foot) looks like could be bones jammed together too tightly. Since the project in the garage on 3/9, my foot has just hurt to stand or walk and I only do any walking when necessary. Pain before that was one spot on the lateral side and pain from whatever was snapping. Since then pain and limitations have greatly increased and hurts just walking across kitchen. Since the garage project, snapping only happens occasionally and mostly when twisting. After recent fall on stairs, less pain in tendons.

On 3/5 I was still able to bend that big toe joint that is now frozen. Could this joint be frozen because of bones shifting too close together? If toe is jammed from scar tissue, should just be a month old and hopefully can break up. If bones, maybe if arch raised would pull apart and allow bones to move again.

1/18 X-rays prior to weight bearing.
2/3 able to put full weight on foot first time in boot
2/15 in boot could climb 2 flights of stairs one step at a time, but upright and without crutches, to get to upper gym for basketball game.
2/29 something in ankle felt like snapping over bone with each walking step
3/4 spoke to Surgeon's office about snapping. Told to try using stirrup brace. Brace too painful on outside of foot and no change in snapping while wearing brace.
3/5 St. pats party in Boston at family's house. Could walk up carpeted full staircase normally and upright, so toe joint could bend at that time.
3/9 I did project cutting and piling cardboard and straightening garage in sneakers ( snapping hard each step that day)
3/12 wondered if too swollen and inflamed to snap. Stabs in side of ankle each step. Started having to crawl up steps or put hands on stairs in front of me as I went up. Could not climb stairs upright. Extensors tendons in foot swollen and painful.
3/23 pain increases. Limiting walking to only necessary. Any walking or standing hurts entire foot.
3/25 not snapping often, but feeling unstable on lateral side
4/8 foot fell forward from bottom step. Unable to bear weight that day and only could walk on heel next day. Tendon pain has decreased since.
4/9 new X-rays showing foot less cavus.

Spoke with surgeon's office and was blown off. Told that foot will never be as good as it was before the last surgery and I would need orthotics for life. Blamed continuing problems on CS damage even though toe joint started after this surgery. Would not discuss bones in foot or why orthotics would be needed, just told needed to go to PT for now and we would discuss orthotics later. So, I guess I try to treat myself for a maybe problem that I might have. If the bones are jammed together and blocking joint, I would rather try to do something now on a month old problem and try to keep joint useable rather than wait until joint destroyed and then get orthotics to lessen pain. Trying wearing arch support sleeves to try to raise arch and separate bones. No idea if this is a good plan, but all I can think of now. Ordered surgical reports so I can try to search for new doctor.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on April 19, 2016, 03:54:13 AM
I wore an arch support sleeve on my left foot whenever weight bearing, except showering, since Friday afternoon. We had to go to my son's basketball tournament in another state and stay in a hotel. Lots of walking and standing. I do think the arch support is helping. On Saturday we had to go up several flights of stairs to get to gym at a university. I couldn't find an elevator. I was able to walk up flight of stairs normally, but then the muscles in back of calf started feeling like they were going to explode ,so half way up the second set, I switched to one step at a time. When we got home Sunday night I was able to bend the big toe joint at ball of foot, not as much as good foot, but the joint was moving. Today I was able to cautiously get up stairs in my house normally.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Clarkey on April 20, 2016, 06:13:01 PM
Hi Kristin,

I am pleased to see some improvements with your ongoing ankle problems, will it last is always going to be on the back of your mind after all the setbacks you have had to endure. The arch support seems to be benefiting for you as you are more flexible, finding it easier attending family commitments. Stairs are always a challenge if you are suffering form joint problems both pre-op and post-op.

Hopefully things will continue to improve even further for you.

[email protected]
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on April 24, 2016, 03:42:30 AM
I'm glad to hear the arch support is helping but am so disappointed that you're still getting stonewalled by doctors about symptoms, and having to do so much self-management of your recovery. You would have thought at this point that anyone willing to take your case on would be willing to acknowledge that it's not a usual history, even if they're not willing to respect how much you've researched and learned since your original injury.

I really hope that you're able to get to a point of better mobility and less pain from here. I don't check in to KG as often as I used to, but I do watch your thread because I'm always keeping my fingers crossed and thinking of you as you continue on this journey.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on May 28, 2016, 07:09:50 PM
Thanks Snowy and Nick. Sorry for delay in responding. I called my surgeon after my last post to tell him what was going on, the effect of raising arch and asked for help. I was blown off and told by his assistant that he would not help even with arch support until 6 months. I go back to see him in 2 weeks. It has been stressful and depressing watching my foot be damaged and not being able to do much to stop it. I bought walking sneakers that have a slight rocking bar to assist with moving my foot while limiting pain. I also still wear an arch support. My ankle has rolled many times and my peroneal tendons just feel constantly sprained. My left knee now aches from the ankle collapses. I have found that I have started walking only on the outside of my left heel and avoiding the painful joint altogether when walking. I'm sure that is having a horrible effect on the rest of my reconstructed foot as it is getting twisted looking. I wish I never had this surgery. I have the start of hallux rigidus (limitus), similar to turf toe, but my condition is caused by a surgical miscalculation in cutting my bone angles and is leading to arthritis and not being caused by arthritis.  I hope that I can find someone to correct the osteotomy that left me in this mess, I'm not expecting my surgeon to do more than offer me orthotics or steroid injection to reduce pain from my deteriorating joint.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on June 08, 2016, 08:15:50 PM
I feel a little bad for my surgeon today during my appointment, but not that bad since he was trying to bs me. He did get the full wrath for every time i walked away quietly after getting a bs line before. I got the typical lines when surgery doesn't go as expected - not a new symptom but pre-existing, always was like that but only notice now after such a great surgery, if you don't move joint there will be no problem. Ugh. I called him out on every line and rejected his offer of cortisone shot and orthotic that would guarantee condition continues to deteriorate. He finally, after accusing me of knowing too much,  admitted that it would not be a big deal to either shorten bone or redo his osteotomy cut and that if either was done my problem would stop. I need to get standing xrays. He was laughing by end of appointment.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on June 30, 2016, 12:28:06 AM
Saw My surgeon today. He reviewed my recent x-rays and said I need surgery. I now have arthritis in the joint so he wants to do a cheilectomy to remove the arthritic bone spurs that have developed and he said both of the sesamoid bones in the joint are wildly subluxed, arthritic and enlarged and he wants to get those back in place with the possibility of having to remove one if the arthritis is too bad to make it still functional. Finally, if after getting out the arthritis, joint still can not move, he agrees the bone alignment from the osteotomy surgery is off and he will do another osteotomy.

His office will call with a surgery date - surgery center just bought by new owner and have to renew certifications so not sure if this is weeks or months away. Not as major a surgery as last surgery and I will be able to walk in surgical shoe after surgery.

Not that it matters, because regardless of the reason, the joint is now filled with arthritis, but I wonder if this has all happened since April when I begged him for help because joint was getting stuck bone on bone and I was afraid becoming arthritic. It could also be some damage from when foot was cavus after the CS, and the shape of my foot made all weight be carried on heel and ball of foot.

8/17 - i have a surgery date of 9/14 and see the surgeon on 8/31 to discuss the surgery.

9/1 - When I saw surgeon in July to go over xrays, he agreed based on xray that the angle of the osteotomy he did on the metatarsal was off and was stopping the joint from moving. When I saw him yesterday he forgot the last appointment and is approaching the surgery with the idea that I somehow developed severe arthritis out of nowhere which caused my sesamoids to dislocate and block my joint; he believed his prior osteotomy is doing great. Ugh!! I tried my best to try to convince him not to approach my issues backwards, but when I left he was still saying he must follow his sequence of cheilectomy, relocating sesamoids, removing medial sesamoid, and only then test to see if bone angle could possibly be the problem. If he only cleans out joint, the bones which hit when joint is moved will just cause the arthritis to come back and damage more bone. I asked him to please try to simulate weight bearing in surgery by pressing against foot, to see if joint still blocked after cleaned out. Didn't get a promise, but I hope he will think about it. I don't want any more surgeries.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on September 22, 2016, 12:56:00 PM
I had my first post-op appointment yesterday; surgery was last Wednesday. The surgeon said he was happy to find that my two sesamoid bones were enlarged, but not arthritic. He released both and relocated them to the correct position under the ball of my foot. He said my joint space was still good and not arthritic, so he filed off several bone spurs and a hook shaped piece at the end of metatarsal bone. He said I had much more movement than before in the joint on the surgical table. He did not re-angle or shorten the metatarsal bone as he had discussed doing. I am allowed to walk on foot in surgical shoe and get stitches out next week. I now wait to see if he did enough to stop the bones in joint from hitting. If not, this surgery will be all for nothing and the bone spurs and dislocations will all happen again. Articles say up to 30% of top of metatarsal can be filed off if arthritic, but not sure if would be done if bone is normal but at wrong angle for joint movement. Last time it only took about 4-5 weeks for damage to occur, so I will know soon if surgery helped more than temporarily. Right now I can walk with less pain than before surgery and can put weight on front of foot.
9/27 - not sure if surgery helped or not. There are times i can put full weight on front of foot when I walk and other times I can barely put weight on it - not dependent on time of day or activity level, so I think the sesamoid bones are floating around in and out of place. If i do too much, I wake in middle of night to deep bone pain - just regular healing or arthritus starting from bones hitting? Just not sure. I see surgeon tomorrow to get stitches out.
10/15-i am able to put full weight on foot and walk in sneakers. Joint is still very bruised. There are times I am hopeful surgery has made me good enough to just start living again, although with so much muscle death from cs I will always be somewhat limited. I have had some nights of deep bone pain so fear of arthritis returning still there. Better than before last surgery overall.
11/11 - unfortunately since surgery didn't address the cause, the arthritis has once again returned and sesamoids dislocate ( although so far not trapped in joint). My surgeon has signed off, so this is it until pain gets unbearable. At that point may have to fuse joint although joint space is good and no arthritis in joint, because the osteotomy fix is harder to find a qualified surgeon to do.
3/4/18- i haven't posted in this diary since 2016 when surgeon told me he did not perform the needed surgical procedure and would not. My husband had made me promise before that surgery that no matter what the outcome I would not seek further surgery. I have been walking on the outside corner of my left heel since if I try to walk using the ball of my foot, the sesamoid bones dislocate and press on a nerve causing excruciating pain until they eventually migrate back into position. This altered gait/weight distribution has caused my heel to feel like the screw inside is shifting; my peroneal tendons are strained and painful with hardware from their repair piercing internal tissue causing blood bruising; I have had repeated incidences of compartment syndrome that have destroyed more muscles in lower outside of calf causing weakness, pain and indentation; my opposite hip keeps me awake at night with hollow aching pain, the failed osteotomy site in foot throbs in pain with sharp pain at damaged joint. A recent herniated disc with severe pain landed my husband in emergency room and made him understand how much life sucks with chronic crippling pain. He has agreed that I can see a foot surgeon to get the osteotomy corrected. I have an appointment on Tuesday.

3/6/18 - Surgeon is sending me for a CT scan to get better view of issues in foot and to see if my heel is still fractured from the surgery in 2015 when heel was cut in half and the bottom half shifted over and screwed back on. He agrees completely with me that the dorsiflexion osteotomy (bone on top of foot heading into big toe joint) was done at the wrong angle and it needs to be redone. He said he would cut into same incision, take out screw and a v shaped piece of bone and then screw bone back together to raise bone angle. He said foot is still too cavus- high arch, but he would not fix anything besides the one bone. I hope if that bone is recut then most of the other pain will settle or at least not get worse.

4/25/18- my CT showed that my heel osteotomy is healed. Pain in heel I guess is just from the screw and walking on the side of it for the past few years. I have next surgery scheduled for 5/9 to take out osteotomy screws from first metatarsal on top of foot. Surgeon will then cut wedges of bone out to reangle the bone at the same level of my other metatarsal bones. He will then screw it back together and I will have 6 weeks non weightbearing as bone heals. I had to sign that he has permission to harvest bone from my heel if needed during the metatarsal surgery. I should be able to walk on a flat foot once healed completely.
5/6/18- i saw the CT report and it gives me hope that I might be not great, but maybe okay after surgery. My sesamoid bones are mildly arthritic, I have mild arthritis in 2 different spots on ankle from walking on side of heel and I have heel spurs by plantar fascia/achilles insertion so not pain from the screw. Hopefully if I can walk flat on foot after surgery these arthritic changes won't hurt as much along with the tendon and cs issues from walking on side of heel. Only a few more days.
5/9/18-the surgeon told my husband that he thinks surgery went well. ( i guess he talked to me, but again why do they talk to unconscoius patient) He removed screws from prior osteotomy and put in a metal plate as he reangled bones to match other metatarsals in foot. He did take a bone graph from my heal to use. The anesthesiologist gave me multiple nerve blocks prior to surgery. I have never felt this good after - probably combo of lighter anesthesia dose needed and they did not give me any opiods during or immediately after. They gave pain drugs in iv, but toradol is the only one I remember. I still have no pain, but am just starting to feel pressure at bottom of foot. I hope nerve blocks last up to the max 36 hours. It's nice to have a clear nonopiod heaf and no pain.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: Snowy on May 19, 2018, 04:12:36 AM
How strange - I visit KG sporadically at best these days, but for some reason today I thought to check your thread and discovered the latest updates on your last post. I am sorry that after everything you ended up in surgery yet again, but so relieved that your husband had a change of heart and that you found a surgeon who was willing to deal with the mistakes from last time. I am hoping for the best outcome possible for you, and that this is the last surgery your foot needs.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on May 19, 2018, 06:20:40 PM
Thanks Snowy. I figured most of current users wouldn't get why I was posting about a foot reconstruction on a knee forum, so just added info on my most recent surgery to an old post. I still can't fully grasp how a simple ACL tear from skiing could have had so many untreated complications that I ended up losing many leg muscles with a crippled deformed foot. I'm hoping this surgery takes away some of the pain. I am still nonweight bearing so won't know how surgery worked until near the end of June.

At least one of the doctors who treated me learned something from my mess to try to help other patients. Not suprisingly, it is my sports med doc. He has become a go to doctor in the NYC area for compartment pressure testing and is offering to try botox injections in an attempt to assist patients who continue to have compartment syndrome pressures despite having had  Fasciotomies. My last compartment syndrome surgeon now lists himself as being an expert on the surgical treatment of the disorder and recruits patients. I am more hesitant to believe that he learned to listen to his patients and believe what they are saying to him, but I sincerely hope that he will take his patients concerns seriously.
Title: Re: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion
Post by: kcknee on June 19, 2018, 08:13:35 PM
6/19- I saw my surgeon for my 6 week follow-up and found out my idea of starting weight bearing does not match his. I had hoped for weight bearing as tolerated so walking by next week at latest, but unfortunately it is 25% for this first week, 50% for next week, 75% for next week and then 100% all while wearing a surgical boot. In a month I see surgeon again to see if I can get off crutches fully and can start wearing a normal shoe. He will decide if I need PT then. Ugh, 25% weight bearing on crutches is harder to live with than using a knee scooter where I had use of at least one hand to carry stuff. It does make sense as he explained, he took a wedge of bone out of my foot and the screwed it back together at new angle. The gradually increasing pressure from weight bearing will help the bone to strengthen and strongly heal internally. At least I can sleep without the boot on now.

4/10 - the last surgery was a success, in that I can now put my foot flat when I stand, but the compartment syndrome problems continue and have undone a lot of past surgical work. Since the surgeons in the past (not latest guy) always tried to insist that I was lying about symptoms instead of saying they didn’t know how to continue treating me, i get very little family support since they tend to believe doctors. After having to shovel driveway last December, a horrible compartment syndrome episode attacked peroneal muscles and the stress on the tendons from muscle atrophy pulled the metal anchor out of my ankle and the tendons now once again snap with walking. Just recently a weekend attending my kid’s sports tournament caused CS in the back of my leg and I fear that my achilles tendon has torn where it was cut to be lengthened in prior surgery. I can stand and walk flat footed, but can not push off or stand on toes. I did Thomson test on myself, but can not tell conclusively. My foot does hang differently when off side of bed on my stomach, my toes and ankle fold over forward. Not sure if even worth trying to fix, if is torn, or if any doctor would even help.