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Author Topic: The good, the bad, and the really horrible  (Read 25013 times)

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Offline KateandTom

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The good, the bad, and the really horrible
« on: August 10, 2006, 02:52:53 AM »
Here we are in Vail. Tom had surgery this morning.

The good: we know what probably caused the rapid loss of function and scar tissue return so quickly after the last surgery.

The bad: it was a massive infection which is deep into the bone and causing osteomyelitis of the femur above the kneecap.

The really horrible: the infection cause massive scarring of the quadriceps, which have shortened and now limit flexion to maybe 110-120 degrees. And even if the quads could be lengthened or otherwise that problem solved, the infection process has caused significant degradation of the cartilage in the knee joint. Dr. Millett actually said to me, while Tom was in recovery, that he should think about getting his knee fused (ie., the joint obliterated and the leg fixed straight - a "peg leg" is the term used).

His other options are

Total Knee Replacement -- Dr. Millett and his fellow Dr. Wong think Tom would be a very high-risk candidate for, given that he now has a "history" of infection. It would be hard to find a doctor to even do it. Add to that the quadriceps/flexion limitations and the fact that knee replacement doesn't usually get you any better ROM than you had before surgery.

Amputation above the knee -- unbelievably, this seems like an equal alternative to fusing the knee. At least Tom could ride a bike. Is it a coincidence that we saw an amputee with a prosthetic leg on the shuttle bus to pick up our rental car at Denver airport only three days ago, and I even commented to Tom - "look, he walks better than you do!" At least with a prosthetic Tom could ride a bike, which is all he had dared to even hope for out of this surgery anyway.

For some reason, even with all this dismal talk, they are scheduling Tom for PT starting Friday. He can't do anything yet, because they ended up doing an open procedure (which discovered the abcess) and the wound is still open with antibiotic "beads" in it and an aquarium-like pump drawing out the fluid and pus. They go back in on Friday to remove the beads, flush everything and close up, after which therapy can begin. Before the surgery, there was one particular PT that Dr. Millett wanted Tom to work with, but now apparently it really doesn't matter anymore. It feels like they've already given up on his leg, and are just humoring us since made plans to be here until the 23rd. I just want to go home...

Kate

Offline Kai

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Re: The good, the bad, and the really horrible
« Reply #1 on: August 10, 2006, 02:58:56 AM »
Oh Kate...  I dont know what to say...  you must be heartbroken...  I am so sorry that this is how it turned out...  if I can do anything.. please let me know.. 
ACLR - (patellar BTB autograft) left knee - May 31, 2006
Partial Lateral Meniscectomy right knee Feb 20, 2008
Partial Lateral Meniscectomy right knee Aug 11, 2008

Offline Jaci

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Re: The good, the bad, and the really horrible
« Reply #2 on: August 10, 2006, 04:21:25 AM »
Kate,

I'm also at a loss as to what to say. I'm so sorry for what you and Tom are going through.

I will keep you in my thoughts and prayers.

Jaci
10/03 Twist injury
12/03 Menisectomy- tears ACL, MCL, & LCL missed by OS
Arthrofibrosis ROM 38-68
3/04- 4/08 Multiple scar tissue procedures:
6 scopes w/LOA, AIR, LR, chondroplasty, synovectomy, bone spur & plica removal
3 insufflations, many injections
Chronic AF, patella infera, IPCS

Offline Nettan

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Re: The good, the bad, and the really horrible
« Reply #3 on: August 10, 2006, 07:46:45 AM »
Kate, a big hug to you and Tom. He has a very tough descision in front of him.
If I were you I would check all alternatives really close and also see if you can meet someone with fused knee and also on with amputee. Then you can ask questions and also see what's best to choose. I'm sorry that it has gotten this far.
Thinking of you both.

HUGS NETTAN  8)
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline mee

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Re: The good, the bad, and the really horrible
« Reply #4 on: August 10, 2006, 12:59:12 PM »
Oh my God, Kate.  I am so sorry to hear this.  Thank goodness you chose the surgery sooner rather than later.

You guys are in my thought and prayers.


Mary
Dec 1999  RKnee - ACL tear while running on treadmill-weird, I know!
Jan. 2000  RK ACL Recon
July 2000   RAnkle peroneal tendon repair (decade-old injury)
April 2001  RK scar debride
Sept 2005 RKnee debride & fat pad removal
July 2006 RKnee - full ROM, rehabbing sloooowly

Offline stgiles16

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Re: The good, the bad, and the really horrible
« Reply #5 on: August 10, 2006, 01:03:26 PM »
kate, I am so sorry for the news that you recieved about tom's knee. I will be thinking of you and tom as you make this difficult decision.

missy
2 ligament recons right ankle
2 arthroscopic,
5 open knee procedures
2 Plica removals
bone spur removal
2 microfractures
4 debridements
2 open LOAs all on left knee
Arthritis,both knees, ankles, shoulders, elbows, hands,spine
Fibromyalgia
Arthrofibrosis
LOA & PKR 2/15/06
RA
in pain mgmt
TKR JAN 2012

Offline Janet

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Re: The good, the bad, and the really horrible
« Reply #6 on: August 10, 2006, 01:59:07 PM »
Kate:

Give Tom our best and let him know there are a lot of people "out here" thinking of him. For now, I suppose all you can do is focus on the recovery from this surgery and getting the infection in control. Then you can take the next steps as needed as things calm down and you aren't in such a state of shock.

My husband has been dealing with a bone infection in his thumb for a couple of years. For some reason, he had developed a cyst in the bone, which was removed a couple of years ago. It didn't look infected during surgery, but he developed an infection post-op and ended up having to have a "clean up" a couple of weeks later. Things eventually healed and bone regrew as it should have, only to have the cyst return earlier this year. He had another surgery, this time with a bone graft, followed by massive antibiotics, but the infection still grew. About two weeks ago he had another "clean out" surgery followed by IV antibiotics and will continue taking antibiotics for several months. His stomach is really paying for the months of antibiotics. His thumb now looks pretty good, but we are paranoid! He has been told that they can keep cleaning it out, but that eventually it would have to be amputated if the infection is out of control. And all this just in a thumb. I can't imagine dealing with a massive infection in the femur and knee.

Keep your heads up and try to think positive. At least the infection was found and they now know what they are dealing with. Perhaps an infectious disease doctor could be of benefit?

Janet
« Last Edit: August 11, 2006, 02:18:53 AM by Janet »
Torn quad tendon repair & VMO advancement 4/99, MUA with LOA 10/99, Patella baja and arthrofibrosis, LR & medial release & LOA 5/01, LOA & chondroplasty 6/03,TKR on 11/06, MUA 12/06. From perfect knees to a TKR in 7 years, all from a fall on a wet floor...and early undiagnosed scar tissue.

Offline KateandTom

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Re: The good, the bad, and the really horrible
« Reply #7 on: August 10, 2006, 02:25:34 PM »
Everyone,

Thanks for your kind wishes. They mean a lot to us right now. We are hoping to get more answers today.
Dr. Millett did call in an infectious disease doc yesterday, so he's on the case. Don't know how great he is or anything, but he seems OK. Tom is also going to talk to another doc sometime during our stay about alternatives such as fusion and TKR. I see people on these lists who have had TKR because of staph infection, so obviously it's possible. As for the range of motion, Tom never expected to get normal but really wanted to be able to ride a biike. He certainly couldn't do that with a fused leg!

I'll try to keep up the updates. It's going to be another long day hanging out at the hospital trying to keep my 2 year old entertained....

Kate

Offline hottubpam

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Re: The good, the bad, and the really horrible
« Reply #8 on: August 10, 2006, 03:34:31 PM »
Kate,

I am stunned by the diagnosis and I can only imagine what turmoil you are going through.  I am so sorry.  Words seem  inadequate right now. 

Like the others on this board, I'm here for any moral support you might need.

Pam
ACLR, Menisectomy 3/04; ACL resection, Cyclops lesion removal, LOA & MUA 10/04; LOA, LR & AIR 12/29/04;#4&5 surgery on 2/9/05 & 3/2/05 debridement, irrigation & lavage, portal closure; #6  LOA, AIR, LR & other releases 12/9/05; #7 surgery 1/18/06 portal closure, lavage, debrid etc #8 skin graft 3/06

Offline TracyS

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Re: The good, the bad, and the really horrible
« Reply #9 on: August 11, 2006, 12:02:37 AM »
Hi Kate,

I too am stunned and saddened by the outcome of Tom's surgery.  My knee woes seems pretty trivial indeed when compared to what you and Tom are facing now.  Hopefully, having caught the osteomyelitis early the final outcome will not entail fusion or amputation.  You are at a world class clinic and I'm sure Dr Millett and Co are doing everything they can to save Tom's knee.

My prayers are with you and Tom.

Tracy 
left knee: '90-ACL recon, '91-tibial screw removal
right knee: 12/00-ACL recon, lateral meniscus repair, 3/01-LOA, 10/02-patella tendon LOA, bone spur removal, tibial screw removal, 4/04-joint, patella tendon, pes anserinus tendon LOAs, 5/05-LOA, AIR, synovectomy, chondroplasty, loose body removal

Offline JaneB

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Re: The good, the bad, and the really horrible
« Reply #10 on: August 11, 2006, 01:40:04 AM »
Thinking of you.  All best wishes and prayers.

JaneB
ACL repair 3/04
arthrofibrosis developed ROM 125/-10
LOA \anterior interval release/chondroplasty 12/04

Offline SarahSmile

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Re: The good, the bad, and the really horrible
« Reply #11 on: August 11, 2006, 03:12:50 AM »
Kate,

I can't even imagine what the two of you are going through right now and I'm not even going to try to say I understand, because i don't... but like others on this board, I'm here for moral support and I certainly have deep empathy for you and I can try very hard to put myself in his/your position and be supportive that way. While I can't possibly advise you and Tom because it is way above all of our heads on this board, I can try to relate as much as possible with all of the health issues that i've been going thru. One thing I would think about is if he had his knee fused, he would most likely have severe back problems/pain and other areas of your body also compensate for the straight leg and he would most likely also have foot probems and many other issues. I know that an amputation or TKR sound just as scary, but I would consider all your options, get as many opinions as possible before you make this life-changing decision. With an amputation, or a TKR, they have their own set of problems, but you need to figure out what is best for Tom and his lifestyle.. with the TKR he may be able to move it a little better than a fusion (although not perfectly obviously given his severe stiffness and history of infection) and it may be better in that regard and hopefully be easier on his back. Just walking with a straight leg for five years, I have three herniated discs and I just found out a few days ago that the disc herniation is causing spinal fluid and pressure in my brain and i'm getting a spinal tap tomorrow to find out just how much and the neurologist is saying I almost definately need back surgery to take pressure off my brain- this is all because I kept throwing my back out from walking with an almost straight leg/ limp (well it was stuck at 20degrees) for  4-5years. So it''s good to consider other body parts as well when considering your options. I would hate to see him having back surgery down the road ON TOP of his knee issues.

Please let me know if there's anything you need! All my best to both of you and I will definately keep you in my thoughts and prayers!

Take care!!!!
Sarah :)
Severe AF
'95-ACL Recon
'01-ACL Recon revision; 30 degrees extension
'02-MUA, notchplasty. Severe arthrofibrosis.
'04-MUA,Chondroplasty,menisectomy,synovectomy,bone spur rmvl.
'04-MUA, Chondroplasty,synovectomy
'05-Extensive LOA, AIR, LR
Surgery #7: 7/12/06: LOA, AIr
9/15/06: DIAGNOSED W/ RSD

Offline IndyCelt

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Re: The good, the bad, and the really horrible
« Reply #12 on: August 11, 2006, 03:35:25 AM »
Kate,

My heart sank reading your post about Tom.  We all root for good outcomes for everyone, but this is obviously one of the worst situation.  This hits close enough to home  - I remember times after my infection when I seriously wondered if amputation would be better than continuing.  Tom's options seem to only be a choice of which is the least worst of the three.  It will be a difficult decision.  As others said, ask lots of questions and see if someone can put you in touch with others who are living with each of these choices.

I'll be thinking of both of you.

Cheryl
2-1-2005 Exise of bipartite patella
2-21 and 2-23 clean out for Strep infection
10/3/05 Scar tissue resection

Offline jim mac

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Re: The good, the bad, and the really horrible
« Reply #13 on: August 11, 2006, 04:13:13 PM »
Kate,

Reading your post really hit close to home for me.  It was very upsetting and still is.  I too am a (or was) cyclist.  I have basically had a fused left leg since March of '05.  It has been awful!  I did not see what Tom's condition was before surgery.  Were you there to have adhesions removed (Arthrofibrosis)?  How long has Tom been in this condition? 

You probably aren't in the mood to be bombarded with questions . . . sorry.  I have massive scarring due to a post-op Staph infection and then a MUA which further aggravated the condition.  Dr. Steadman did indicate that I had lots of scarring outside of the knee capsule.  I'm very nervous about my upcoming surgery.  I have always maintained that if I could get enough ROM to get on a bike that I would be OK.  I feel horrible for Tom!  It's amazing how you can meet people on a web page who are struggling with similar problems and feel so strongly about what they are going through!

I hope that luck or fate changes in Tom's favor and things eventually turn out OK for him . . . somehow!

Good luck to you both . . .

Jim
2005 - 3/4 arthroscopy meniscus repair + plica removal, 3/9 staph infection 2nd scope (lavage), 3/12 open incision (lavage), 3/13 cauterize vein + lavage, 3/17 lavage and incision closure, -  Arthrofibrosis -  6/24 debridement, LR, MUA - 10/12 LOA + synovectomy 2006 . . .

Offline KateandTom

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Re: The good, the bad, and the really horrible
« Reply #14 on: August 11, 2006, 07:55:02 PM »
Here's an update!

They opened Tom up again today (was closed temporarily on Wednesday) and no sign of any infection yay! There was some irritation of the tissue around where the antibiotic beads were, but they didn't think that was significant and they were to come out today in any case. They revisited the knee joint and found some scar tissue, but not a whole bunch and pretty pliable. The fellow was reasonably confident that it wouldn't be overgrown by Sunday, which is when they take out the two drains they placed today and hopefully start moving the joint. They were able to get the knee to about 85-90 degrees today (were not pushing it at all) so hopefully with therapy Tom should be able to get that much... which is exactly what he had when the last surgeon told him to quit PT 3 weeks before his last arthroscopic lysis/etc on June 29th. So no improvement, but a major life-threatening condition caught and dealth with. We are thankful for that... and tremendously thankful for this board where I first learned to question the wisdom of an MUA for Tom. As it is, the MUA would not only have probably made the arthrofibrosis worse, but could have actually killed Tom if the manipulation had released the infection in toxic quantities into his bloodstream. It was to have been done at a stand-alone, outpatient surgical center... not a lot of support for such a life-threatening situation, especially since they likely wouldn't have had any idea what was happening. Thank GOD we didn't go that route!!!

Some background (for Jim and anyone else): Tom's femur was shattered on 12/31/05 in a motor vehicle accident. The condyles of the femur just split apart, lots of bone busted out of the trochlear groove, and all in all a horrendous break. He had a DVT 3 days post-ORIF, and then started on a CPM like 7-8 days later. He was never able to get past 104 degrees on the CPM. He gradually lost flexion and extension over the summer, probably from very traumatic and aggressive PT, and was at about 5-90 degrees prior to completely stopping PT before a LOA/MUA on 6/29. During the surgery, the doc says he got him to about 135, by the third day post-op he was getting to about 110. Then the knee inflamed and he started losing range. We returned to the doc, who said "just keep working at it". Knee very inflamed and sore over the next 2 weeks, went back to doc again, doc said "you are overdoing it" and gave him a cortisone injection and prescribed medrol. At 5-week post-op (flexion now down to about 80 degrees) doc says "just keep working at it, the hardest part is getting over 90 and then it gets better". Doesn't seem to understand that knee isn't moving towards 90 degrees AT ALL but going backwards?!? Said if Tom wasn't better in another 2 weeks (8/16) would recommend an MUA even though has seen dismal results with that... Luckily, we had an appt with Dr. M at SH in Vail the following Tuesday. The 5-week post-op with the last OS was just to see what he would say. Dr. M didn't realize it was infected, either, on Tuesday because Tom goes around with his aero-cuff thing practically 24/7 and so the knee wasn't red or apparently inflamed. But Tom's overnight Donjoy heated up overnight Tuesday, so it was quite warm by Wednesday morning and the knee was pretty much glowing red-hot. Dr. M took one look at it, pulled out the blood tests that Tom had done last week, and figured there must be an infection. I don't understand why Tom's regular doctor didn't flag the blood test results, which showed normal white blood cell count but hugely elevated SED rate and C-reactive protein levels (indicators for infection). Regardless, they did an open procedure, found that the knee fluid itself looked fine, although the cartilage was degraded, so did all the normal lysis and releases in the knee. Then flexion was still very limited, so they started releasing the quad muscles, which were heavily scarred down to the healed fracture. That's where they found an abcess which had eaten into the bone and under the fracture plate. They pulled the first screw and pus came out the hole (ewww). So they took out all the hardward, debrided the area, etc. etc. and that's what they went in to close today.

One reason they think Tom's knee flexion is limited is because the condyles are not well aligned but somewhat tilted backwards. Dr. M thinks this mechanically limits flexion to about 120. So he thinks his function is permanently limited, and will be further crapped out by this surgery and the infection (which is why he was so pessimistic, I think). However, I would think a knee replacement would fix this mechanical problem and perhaps give him more range? Also, because of the quad scarring, the muscles are very shortened, also limiting flexion. (I wonder if they can tell when flexing it in the OR whether it is the quads stopping the bend or the misaligned fracture?) BUT... Dr.  M's assistant said today that if the joint doesn't rescar significantly and the quads stay loose from the bone, it is possible that PT might be able to gradually lengthen the muscles and increase flexion. In any case, Tom needs to try to regain function and ROM as much as possible, as soon as is safe (won't rip open the wound) in order to preserve his options, either for TKR or to try to keep this leg awhile longer. Tom is utterly opposed to fusion. I'm not sure exactly why, but I agree that it should be an absolutel last resort?! They are going to arrange for Tom to talk with a fusion doc and a TKR doc before we leave (I think). 

As for the infection, the asst surgeon had viewed the arthroscopic video made at the 6/29 surgery, and said that the cartilage doesn't look much worse this time than it did then (given that it's somewhat hard to compare because the arthroscopic video was magnified and this was an open procedure). That supports their belief that this infection has probably been lingering in there since the spring?! It probably also explains the fatigue and tendency to get cold that Tom has experienced all year long, as well as the low red blood cell count he had going into the 6/29 surgery (the infection in the marrow of the femur would affect red blood cell production). Hopefully now he'll feel more like his old self, aside from the stiff knee.

We are hoping and praying that Dr. M is just being conservative and trying not to get our hopes up. I hope it isn't as bleak as it sounded the first time. But we sure are glad that he caught the infection, no matter what happens with the AF.

Kate