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Author Topic: ACL replacement leading to CS, AF and possible ankle reconstruction or fusion  (Read 37687 times)

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Offline kcknee

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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
« Last Edit: July 26, 2014, 04:06:05 AM by kcknee »
12/31/08 - Skiing injury L knee
6/1/09 - ACL stump removed from joint
8/31/09 - ACLr - Hamstring Graft
12/21/09 - Ant Fasciotomy 
8/26/10 - Anterior Interval Release
12/6/10, 5/5/11, 12/22/11 - Fasciotomy
12/7/12 - Nerve Decompression
6/3/13(m), 7/29/13(l), 12/13/13(m & foot) 2/3/14(l) Fasciotomy

Offline kcknee

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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.

« Last Edit: July 26, 2014, 04:09:04 AM by kcknee »
12/31/08 - Skiing injury L knee
6/1/09 - ACL stump removed from joint
8/31/09 - ACLr - Hamstring Graft
12/21/09 - Ant Fasciotomy 
8/26/10 - Anterior Interval Release
12/6/10, 5/5/11, 12/22/11 - Fasciotomy
12/7/12 - Nerve Decompression
6/3/13(m), 7/29/13(l), 12/13/13(m & foot) 2/3/14(l) Fasciotomy

Offline kcknee

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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.

« Last Edit: July 26, 2014, 04:11:47 AM by kcknee »
12/31/08 - Skiing injury L knee
6/1/09 - ACL stump removed from joint
8/31/09 - ACLr - Hamstring Graft
12/21/09 - Ant Fasciotomy 
8/26/10 - Anterior Interval Release
12/6/10, 5/5/11, 12/22/11 - Fasciotomy
12/7/12 - Nerve Decompression
6/3/13(m), 7/29/13(l), 12/13/13(m & foot) 2/3/14(l) Fasciotomy

Offline kcknee

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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.

« Last Edit: July 26, 2014, 04:13:56 AM by kcknee »
12/31/08 - Skiing injury L knee
6/1/09 - ACL stump removed from joint
8/31/09 - ACLr - Hamstring Graft
12/21/09 - Ant Fasciotomy 
8/26/10 - Anterior Interval Release
12/6/10, 5/5/11, 12/22/11 - Fasciotomy
12/7/12 - Nerve Decompression
6/3/13(m), 7/29/13(l), 12/13/13(m & foot) 2/3/14(l) Fasciotomy

Offline kcknee

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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.” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1298170/pdf/11193063.pdf

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.

« Last Edit: July 26, 2014, 04:15:32 AM by kcknee »
12/31/08 - Skiing injury L knee
6/1/09 - ACL stump removed from joint
8/31/09 - ACLr - Hamstring Graft
12/21/09 - Ant Fasciotomy 
8/26/10 - Anterior Interval Release
12/6/10, 5/5/11, 12/22/11 - Fasciotomy
12/7/12 - Nerve Decompression
6/3/13(m), 7/29/13(l), 12/13/13(m & foot) 2/3/14(l) Fasciotomy

Offline kcknee

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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.
12/31/08 - Skiing injury L knee
6/1/09 - ACL stump removed from joint
8/31/09 - ACLr - Hamstring Graft
12/21/09 - Ant Fasciotomy 
8/26/10 - Anterior Interval Release
12/6/10, 5/5/11, 12/22/11 - Fasciotomy
12/7/12 - Nerve Decompression
6/3/13(m), 7/29/13(l), 12/13/13(m & foot) 2/3/14(l) Fasciotomy

Offline kcknee

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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
OR
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?

Kristin
« Last Edit: August 02, 2014, 01:58:19 PM by kcknee »
12/31/08 - Skiing injury L knee
6/1/09 - ACL stump removed from joint
8/31/09 - ACLr - Hamstring Graft
12/21/09 - Ant Fasciotomy 
8/26/10 - Anterior Interval Release
12/6/10, 5/5/11, 12/22/11 - Fasciotomy
12/7/12 - Nerve Decompression
6/3/13(m), 7/29/13(l), 12/13/13(m & foot) 2/3/14(l) Fasciotomy

Offline Lottiefox

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Kristin,

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.

Lottie
Bilateral patella OA since 2009, no surgeries.
Euflexxa working well x3 to current
Right forefoot CRPS post fusion surgery 2011
Refusing to let the ailing parts stop me....

Offline Clarkey

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  • Neil TheElephant knee packed up carrying his trunk
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]
RK: PFPS, Arthrofibrosis, Tendinopathy, Five cortisone injections
16/01/18 Anterior interval release, distal patella excision, lateral meniscal repair
18/07/14 Anterior interval release  
16/11/09 Medial plica excision, fat pad trimming

Offline Snowy

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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.
Mar 11: R Biceps femoris tear (skiing)
Jul 10: ACLr (hamstring autograft)
Mar 10: L ACL rupture (skiing)
Feb 06: L partial ACL tear (kickboxing)
Dec 03: R bone edema (motorbike)
Jan 01: R patellar chip (motorbike)
May 93: R ACL sprain (hockey)
Ongoing: bilateral PFS and OA

Offline kcknee

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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.
« Last Edit: August 08, 2014, 03:45:59 AM by kcknee »
12/31/08 - Skiing injury L knee
6/1/09 - ACL stump removed from joint
8/31/09 - ACLr - Hamstring Graft
12/21/09 - Ant Fasciotomy 
8/26/10 - Anterior Interval Release
12/6/10, 5/5/11, 12/22/11 - Fasciotomy
12/7/12 - Nerve Decompression
6/3/13(m), 7/29/13(l), 12/13/13(m & foot) 2/3/14(l) Fasciotomy

Offline Snowy

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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.
Mar 11: R Biceps femoris tear (skiing)
Jul 10: ACLr (hamstring autograft)
Mar 10: L ACL rupture (skiing)
Feb 06: L partial ACL tear (kickboxing)
Dec 03: R bone edema (motorbike)
Jan 01: R patellar chip (motorbike)
May 93: R ACL sprain (hockey)
Ongoing: bilateral PFS and OA

Offline kcknee

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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.
« Last Edit: August 13, 2014, 10:28:26 PM by kcknee »
12/31/08 - Skiing injury L knee
6/1/09 - ACL stump removed from joint
8/31/09 - ACLr - Hamstring Graft
12/21/09 - Ant Fasciotomy 
8/26/10 - Anterior Interval Release
12/6/10, 5/5/11, 12/22/11 - Fasciotomy
12/7/12 - Nerve Decompression
6/3/13(m), 7/29/13(l), 12/13/13(m & foot) 2/3/14(l) Fasciotomy

Offline Snowy

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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.
Mar 11: R Biceps femoris tear (skiing)
Jul 10: ACLr (hamstring autograft)
Mar 10: L ACL rupture (skiing)
Feb 06: L partial ACL tear (kickboxing)
Dec 03: R bone edema (motorbike)
Jan 01: R patellar chip (motorbike)
May 93: R ACL sprain (hockey)
Ongoing: bilateral PFS and OA

Offline kcknee

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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.
« Last Edit: August 18, 2014, 03:52:40 AM by kcknee »
12/31/08 - Skiing injury L knee
6/1/09 - ACL stump removed from joint
8/31/09 - ACLr - Hamstring Graft
12/21/09 - Ant Fasciotomy 
8/26/10 - Anterior Interval Release
12/6/10, 5/5/11, 12/22/11 - Fasciotomy
12/7/12 - Nerve Decompression
6/3/13(m), 7/29/13(l), 12/13/13(m & foot) 2/3/14(l) Fasciotomy















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