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Author Topic: Arthrofibrosis being replaced by Heterotropic Ossification Can anyone help??  (Read 4022 times)

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Offline captainruss

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I shattered my knee cap at 17, had 5 surgeries.  I went 29 years before bone on bone and let a doctor do a TKR.  I have had 10 surgeries in the past 2 years.  They replaced my knee joint multiple times with multiple MUA and non stop PT.  I finally convinced a doctor I was having scar tissue.  He was going to do arthroscopic, but the scar tissue was so thick he cut me from my thigh to my lower leg.  He cut out what he described as inches of scar tissue.

Now I stiffened up again.  I thought it was AF all over again, but MRI and X-rays show Heterotropic Ossification.  I am growing bone in my soft tissue and my leg is VERY painful compared to previsously.  The stiffness and pain make AF seem like a party.  I am thinking about amputation.  My doctors will not operate again.  They say only answer is to cut out bone and treat with radiation, but with my complications, they are afraid of infection.  I have had 10 procedures in 2 years.  I have been out of work for 2 years.  I spent my 401k, kids college fund, I am now living on financial aid for college because I am broke.  My wife is working crazy hours...I have 3 kids and don't know what to do next.  I told my wife today about amputation and I thought she was just going to leave.  This has been tough on her....nursing me through 2 years of 10 surgeries...

I know God has a plan, but I wish he would share it with me.  Anyone know anything about Heterotropic Ossification?  I was depressed there are no AF doctors in Florida.  I am told HO is even more rare, especially in a knee.  Normally it happens in a hip.

Russ
80 Shattered patella 5 surg
09  TKR 
09  MUA
09  MUA
09  Knee infected??
10  TKR  Scar Tissue
10  2nd OS  Diagnosis Infection
10  TKR with antibiotic spacer, no joint
4/11  TKR
11  TKR PT
11  TKR
11  TKR  AF diagosis
12/11  HO diagnosed
2012  Intractable Pain
2012  OS split
amputation possible?

Offline missmyknee

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4Fx Clsd red
IMrod fib plate
derotate osteotmy tibfib
AF
IPCS patbaja
DeLeeOsteotmy,LOA,LR Zplasty,bongrf,chondrplty
chondrplty,LOA,fatpad remvd
TKR
openLOA,neurectmy,ITB Zplasty,fabela
PLC recon,revison,LOA,synovec
MCL,revison LOA
openLOA,prox Zplasty
openLOA, 6 neuromas excised,synov
3 Fusions

Offline captainruss

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Pam,

Thank you so much.  You should counsel all these OS out here....they need to put you on retainer!

Russ
80 Shattered patella 5 surg
09  TKR 
09  MUA
09  MUA
09  Knee infected??
10  TKR  Scar Tissue
10  2nd OS  Diagnosis Infection
10  TKR with antibiotic spacer, no joint
4/11  TKR
11  TKR PT
11  TKR
11  TKR  AF diagosis
12/11  HO diagnosed
2012  Intractable Pain
2012  OS split
amputation possible?

Offline captainruss

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Pam,

Okay...now my evil twin is appearing again...I read all three of those links and what I get is HO is prevalent in more than 50 percent of THA and 10 percent of TKR's.  Would you not think one of my OS would know about AF and/or HO?  If I am giving them clear information about AF and trying to convince them I am NOT infected....trying to convince the infectious disease doctors that I am not infected, that HO would be a concern?

As I read it...one shot of radiation post op and I would have been good to go.  The amount of HO you need to have to show on an Xray is huge.  Normally a bone scan is needed.  Mine is clear as a bell on Xray and growing.  If one out of every 10 knee patients and 1 out of every 2 hip patients develop HO, would you not as an OS be aware and looking for it?

I also read it is the result of muscle trauma.  To give me my last TKR, my OS had to cut my thigh muscle and turn it, resew ....you probably know the long word for that...but that and the fact that I have inches ( more than 3 inches) of scar tissue in my knee according to my OS....that this might not have been thought about?

Again, I would not ever think of malpractice except now....I have HO and I have to live with it?  I actually think it is growing in my shoulders and back?  Pain is increasing and no reason to explain why......How does a doctor say....I did surgery on you 4 times...but i don't think surgery is the answer any more.  The articles say the only way to get rid of HO is revision.  I am not living like this.

Sorry for the rant....but I really can't help thinking these guys should KNOW the risks and be ready.  If I do get AF or HO, treat the condition.  Don't tell me to "live with it."

Russ
80 Shattered patella 5 surg
09  TKR 
09  MUA
09  MUA
09  Knee infected??
10  TKR  Scar Tissue
10  2nd OS  Diagnosis Infection
10  TKR with antibiotic spacer, no joint
4/11  TKR
11  TKR PT
11  TKR
11  TKR  AF diagosis
12/11  HO diagnosed
2012  Intractable Pain
2012  OS split
amputation possible?

Offline missmyknee

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Hi Russ

I scratch my head on a lot of things doctors do or think. Those were just a few articles I found. There are many more you can search for on the internet. HO can happen anywhere on the body. Here are some other good articles

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2940819/?tool=pubmed

http://www.ncbi.nlm.nih.gov/pubmed/12439262

http://www.ncbi.nlm.nih.gov/pubmed/17463108

Pam
4Fx Clsd red
IMrod fib plate
derotate osteotmy tibfib
AF
IPCS patbaja
DeLeeOsteotmy,LOA,LR Zplasty,bongrf,chondrplty
chondrplty,LOA,fatpad remvd
TKR
openLOA,neurectmy,ITB Zplasty,fabela
PLC recon,revison,LOA,synovec
MCL,revison LOA
openLOA,prox Zplasty
openLOA, 6 neuromas excised,synov
3 Fusions

Offline captainruss

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I just don't understand.  I know we are the few, the tortured, the victims of AF......but I can't believe this many OS have no idea this exists.  The simple fact that AF and HO are conditions that handicap people for life.  Is it possible this has not been published in any medical papers or sent to these OS as a warning letter? 

My 2nd OS as I mentioned is the world famous Dr. David Dore, Celebration Hospital....doctor to Shaq the world famous basketball player.  He did surgery 2 days a week, clinic 2 days a week, and took Friday thru Sunday off.  He cancelled 2 of my procedures to do missionary work in South America.  Please don't think I am not sympathetic to poor third world countries, but you get all worked up to have the surgery and then he cancels. 

This guy could make me scream louder than any other doctor on the planet.  I once allowed a doctor to take out my bone stimulator using only a local anesthetic.  I am a big guy...was even bigger than....yet I endured it because I had no insurance and could not afford the 1200 for anesthesia.  Anyway, he was convinced my knee was infected and if he stuck that needle deep enough and as many times as necessary, he would find that pesky infection.  Wow, I put my fist through his wall twice trying not to scream. 

I don't want money, but I would like to somehow make him admit he was wrong, that he caused me immeasurable pain that was unnecessary, and that he has the bed side manner of a copper head snake. 

Russ
80 Shattered patella 5 surg
09  TKR 
09  MUA
09  MUA
09  Knee infected??
10  TKR  Scar Tissue
10  2nd OS  Diagnosis Infection
10  TKR with antibiotic spacer, no joint
4/11  TKR
11  TKR PT
11  TKR
11  TKR  AF diagosis
12/11  HO diagnosed
2012  Intractable Pain
2012  OS split
amputation possible?

Offline captainruss

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Pam,

Sorry to bother, but I have more questions if you have time for me?  I came across another post that raised more questions about HO.

1) I noticed some people have ankylosing spondylitis.  I believe I was diagnosed with this in my lower back.  I am not sure what it is?

2)  What is RSD?CRPS?

3) How do these all relate to AF?

4) Have you had any luck with Voltaren gel?

I am consumed trying to educate myself about my options.  I am so frustrated with my OS telling me I need to live with it.

Very mus appreciation

Russ
80 Shattered patella 5 surg
09  TKR 
09  MUA
09  MUA
09  Knee infected??
10  TKR  Scar Tissue
10  2nd OS  Diagnosis Infection
10  TKR with antibiotic spacer, no joint
4/11  TKR
11  TKR PT
11  TKR
11  TKR  AF diagosis
12/11  HO diagnosed
2012  Intractable Pain
2012  OS split
amputation possible?

Offline missmyknee

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Hi Russ

There was a former poster named Jaci, she had AF and ankylosing spondylitis. She has not posted for 1-2 yrs, but you can find her posts by entering her name in the search box.

Here is a link about Ankylosing Spondylitis

http://www.mayoclinic.com/health/ankylosing-spondylitis/DS00483
http://www.nlm.nih.gov/medlineplus/ankylosingspondylitis.html
http://www.spondylitis.org/about/as.aspx

RSD

http://www.rsds.org/index2.html
http://www.rsds.org/2/what_is_rsd_crps/index.html
http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/reflex_sympathetic_dystrophy.htm

Here is a post were Jaci is discussing AS (ankylosing spondlitis) and RSD/CRPS

http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=48822.0

The connection between all three is they are all exaggerated inflammatory responses and immune responses

I tried Voltaren gel, but I did not see any response from it.

Pam
4Fx Clsd red
IMrod fib plate
derotate osteotmy tibfib
AF
IPCS patbaja
DeLeeOsteotmy,LOA,LR Zplasty,bongrf,chondrplty
chondrplty,LOA,fatpad remvd
TKR
openLOA,neurectmy,ITB Zplasty,fabela
PLC recon,revison,LOA,synovec
MCL,revison LOA
openLOA,prox Zplasty
openLOA, 6 neuromas excised,synov
3 Fusions

Offline captainruss

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Pam,

Thank you.  I one of Jaci's posts and that is where I got the questions.

Your research abilities are awesome.  Have you ever considered writing a book?  You could take eight (8) of the most frustrating cases and have a best seller.

Thank you again for all of your help. 

Russ
80 Shattered patella 5 surg
09  TKR 
09  MUA
09  MUA
09  Knee infected??
10  TKR  Scar Tissue
10  2nd OS  Diagnosis Infection
10  TKR with antibiotic spacer, no joint
4/11  TKR
11  TKR PT
11  TKR
11  TKR  AF diagosis
12/11  HO diagnosed
2012  Intractable Pain
2012  OS split
amputation possible?