TKR and Arthrofibrosis

[jbartlett]

Hi All,

[jbartlett]

Let me try this again, sorry about that.

Hi all,
It has been about 1 1/2 years since I was last on this site, I see that there is alot more information on arthrofibrosis since I was last here. Maybe someone can give me some help this time or point me in the right direction. I was a Fireman for thrity-five years an was about to retire and enjoy myself but was told I needed a TKR.

SO,
Two years ago I had a left knee TKR, after the surgery which went well I went through 6 weeks of PT. I quickly lost almost all ROM. The OS did a MUA and was unable to improve my rom by more then 5 degrees. I was then sent to UCSF where I underwent a TKR revison and two more MUA's.

Which brings us to the present, mylast MUA was about 1 year ago. At which time I was told my choices were to live with aknee that bends about 5 degrees and the pain that goes with it, havemy leg fused or have my leg amputated.

Can anyone tell me if ther is anyone who might beable to help me ?

Thanks,
John

[mee]

Hi John,

You may want to also post this in the Knee Arthritis - Total Knee Replacement section of the board.  I haven't had a TKR, but from what I've read, the treatment protocols differ.

From the exchanges that have appeared in this section, Dr. Blaha, University of Michigan is cited as a specialist in TKR - arthro conditions.  You may want to do a search on his name and find his patients' posts regarding their situaitons.

best of luck,

Mary

[jbartlett]

Thank-you Mary.

John

[Jaci]

Hello, John,

Mary makes a good point: It's extremely important that you see an OS who specializes in complex TKR cases and, in particular, arthrofibrosis and TKR. As you probably know, there are many factors that can contribute scar tissue formation including genetics and, in the case of TKR, surgical errors such as an incorrect size or rotated prosthetic. Thus, an OS who is experienced treating arthrofibrosis following other types of surgery (ACL recon, meniscus, etc.), may not be qualified to diagnose and treat the underlying condition that led to excess scar tissue post-TKR. I don't think I said that very well, but I want to stress that your situation is very complicated; you need a doctor who has the right knowledge and experience to treat your highly complex case-- i.e. both knee replacement specialist and scar tissue specialist.

Dr. Blaha is often mentioned in that regard, one of our fellow KNEEgeeks, Janet, who suffers from arthrofibrosis, recently had a TKR with him. The articular cartilage damage that led to her TKR was caused by scar tissue and patella baja, so Dr. Blaha had to go into the surgery with a plan in place to control scar tissue that is likely to form. She just had her TKR a few days ago, so it will be a while before the outcome is known.

Dr. Noyes has performed TKR and other complex procedures on people who have arthrofibrosis, although I don't know if he has done TKR revisions for people with AF.

I live in CA as well, but don't know of any OS here who fit into the narrow definition of 'qualified' to treat your knee.

I wish you all the best and hope you can find an OS to help you.

Regards,

Jaci   

[missmyknee]

Dr Noyes did my TKR and has handled my scar tissue problems afterwards.  Since then, I've had 2 open procedures to remove scar tissue combined with other procedures. He just did a revison, scar tissue removal, posterolateral reconstruction, synvectomy on me. Unfortunately scar tissue has returned and will need to be removed again. I'm very fortunate to have the ability to travel to see him. Worth every gallon of gas ! I had a long history of AF before my TKR and it continues on.

Pam

[Jaci]

Pam,

I'm so glad you weighed in on this. You were one of the people I had in mind when I mentioned Dr. Noyes, but I didn't recall that you had the revision. I hope you're doing well.

Jaci

[Sarahreindeer12]

This is my nemesis!  I saw my surgeon who has consulted with Dr. Blaha about my condition.  At present there is no cure or foreseen cure in the US for arthrofibrois and TKR.  THere is a clinical trial going on in Canada, but even if the drug is approved for usage, it may not be available in the US.

My surgeon has said that he sees fusion as my only way to get out of pain. However, you need to know that the reason he is saying this is because I had a massive staph infection and his concern is that everytime he goes in, my risk for infection increases and the possibility of having my leg amputated is ten-fold.

If I have my knee fused (and no decisions will be made until the end of February), I may or may not be able to hae a TKR in the future.  Once your quad is weakened considerably if a TKR is put in after a fusion, your knee may stay flexed (and you not be able to walk at all) b/c the quad won't be able to hold you up.  Sarah

[jbartlett]

To All,

Thank-you for your POSTS, I am a little confused. Is it possible to remove the scar tissue that I have in my knee that was caused by the two TKR'S and three MUA'S?, it has been about a year since my last surgery. Would Dr Noyes or DR Blaha be the person for my OS to contact. My OS is willing to help in anyway possible, I just need to know which direction to have him follow.

Not many understand what its like to not be able to bend your knee and the way it changes your life. Especially if you throw in some constant pain. I really appreciate all of your help and hopefully we can track someone down that can help all of us that have this problem.

The POST about the work being down in Canada was mentioned to me by my OS at UCSF, but he stated the work was only being done on artrifibrosis after hand surgery. Anyhow maybe they have progressed and are trying it on other areas of the body.

John

[Jaci]

Hello, John,

I have an article on scar tissue removal post-TKR that I can email to you. Is it okay to use the email address in your profile?

I have no idea how you should proceed as I really don't know how it works when one doctor wants to consult with another on a patient's care. I hope someone else may be able to comment on that.

Take care,

Jaci

[hottubpam]

Hi John,

If I were in your situation, I would be on the phone to Dr. Blaha and Dr. Noyes, scheduling an appointment with one or both of them ASAP and then get on a plane and fly out to see them.  I know it is difficult, expensive, etc etc but we are talking about the quality of the rest of your life.

Good luck,
Pam

[jbartlett]

Hi Jaci,

Please send me the article you have.

Thanks,
John

[jbartlett]

Does anyone have Dr Blaha and also Dr Noyes infomation, address phone Etc ?

You can send it to my email address listed in my profile.

Thanks,
John

[missmyknee]

John

I sent info on Noyes to your email 

Pam

[Sarahreindeer12]

May I also have the info?  Thanks!  Sarah