"Arthrofibrosis Specialists"

[hottubpam]

The following is a list of names of OS across the country that have had demonstrated success in dealing with arthrofibrosis. There is no recognized sub-specialty in the OS world but for those of us dealing with this miserable condition it helps to know where you can find qualified help in dealing with scar tissue/arthrofibrosis.

Please feel free to add names to this thread if you know of anyone else. Then we should have this page readily available for the
next member to our exclusive club.


Dr. Colin Eakin, Palo Alto Medical Foundation, California
Dr. Steadman, Steadman-Hawkins Clinic, Vail, Colorado
Dr. Peter Millet, Steadman Hawkins, Vail (as of 10/1/05)
Dr. Lonnie Paulos, Texas
Dr. Frank Noyes, Cincinnati Sports Clinic, Ohio
Dr. Wojitys, Ann Arbor, Michigan
Dr. Folk in South Carolina
Dr. Mike Terry, University of Chicago
Dr. Shelbourne, Indianapolis, IN
Dr. Flandry, Hughston Clinic, Columbus, Georgia



Pam

[Nick_Knack]

Let me add a caveat to this list: that even among these "specialists," there are certain similarities and certain BIG TIME disagreements about how to deal with arthrofibrosis.

As an example, I know that Dr. Noyes advocates the posterior capsulotomy (both medial and lateral) in addition to lysis of adhesions for extension deficits due to arthrofibrosis whereas Dr. Shelbourne absolutely believes that it is a dangerous and unnecessary procedure.

So just beware that just because two surgeons are on the list, do not be under the impression that they agree about everything. You, the patient, have to trust your own judgment as to whom you think is right. And this can be very nerve-racking and unsettling. But, you HAVE to decide for yourself which course of treatment is right for you. Sorry, but there is an element of rolling the dice here.


Good Luck,

Nick

[jim_mac]

Nick,
You got that right. I have yet to talk to two doctors who have similar opinions. I just got an e-mail yesterday from Dr. Millett and he suggested that it might be prudent for me to wait until my knee cools down (I'm only 2.5 months from last surgery) before intervening. He actually said to let the scar tissue mature. I have heard the complete opposite from other Drs. and from people on this web page. Who knows????? I know one thing . . . I don't really want to wait. I want to get the show on the road so maybe I can be back on the bike NEXT summer. Good point Nick.

Jim MacMichael

[pxs]

i'm guessing dr. millet's reason to let the scar tissue mature is to ensure that the overactive inflammatory process is over and wont be simply extended by the new surgery, leading to more scar tissue. as i understand it, the reason to intervene quickly in some cases would be to prevent hardened scar tissue from damaging the joint. this would depend on where the scar tissue is and what it is doing to the mechanics of your joint and to things like your patella tendon and articular cartilage.

[hottubpam]

Jim,

Did Dr. M indicate how long you should let the scar tissue mature???

When I left my 2nd OS (after a partial LOA and the dreaded MUA) which was on 10/6/04 I had my surgery with my new (miracle worker) OS Dr. Eakin on 12/29/04 = less then 3 months. I remember the surgical report from Dr. E stating that parts of my knee were "obliterated with scar tissue". So I don't think waiting would have been the "right" thing to do for me.

Dr. E also had me discontinue PT between my first appt. with him late Nov/early Dec. and the surgery on 12/29. Once the scar tissue gets a solid grip and is significantly impairing ROM, PT will not help. In my case my extension was 15 and flexion was around 90 so the scar tissue had set up pretty fast.

Hope this helps.

Pam

[jim_mac]

Pam,
He did not give me a time frame. He said just that he would recommend a cooling off period for me. Maybe due to the infection that I had? Not really sure? I don't really want to wait if I don't have to because I literally have NO ROM. You said "once the scar tissue gets a solid grip" . . . I don't know how long it takes for that to happen but I have had no, and I mean no ROM (without forcing) since the day I started PT which was around the 20th of March. I have all I can do to get in and out of a vehicle . . . I don't even know how I would sit on a plane, unless it is in the front row so I can extend my leg. I can't sit in movie theaters!!! I just want to get fixed and I don't know how long I can wait without going crazy!!!!
I have also nixed PT for the most part. I still swim in the pool (mostly for fitness) and I do extension exercises and knee mobes but that's about it. I will cry like a baby when I see my knee bend again . . .

Jim Mac

[queenie]

i would love it if you know of this doctor in the new york area as i am desperate to walk again. i cant bend my knee past 40-very painful any help would be appreciated!thanks queenie

[kdhfrank]

I know I have not been on for a while but I would like to recommend Dr. Lindenfeld of Cincinnatti Sports Medicine....kind of flies under the radar due to all the talk about Noyes. He gave me my life back and two years later I can do everything I did before...and I was at 35 degrees flexion before he worked on my knee....and by the way I live in Atlanta....and would not hesitate to make the trip to Ohio to see him again. Lucky for my....Dr. Mark Cullen who trained under Noyes and Lindenfeld is here in Atlanta and is wonderful...I see him for follow-ups and he put my sister's knee back together. Any questions? PM me....long time since I have been on....sorry!

Kim

[Mike_H]

Jim Mac,

I feel your pain. I too ended up with a staph infection after what should have been a routine scope. But now months later with all of the set backs P/T, MUA, and more P/T, I just want to move my leg.
It has been 3 weeks since the MUA and my knee is still warm and puffed up. The lower leg swells everyday and I still wear a TED stocking to keep the swelling down.

Last week I went to my chiropractor for my back and neck (results of spending too much time in bed on the cpm) He took great interest in my knee and proposed that he could help. He is not a normal chiropractor, he works on alot of athletes and uses some of the same techniques that are used in the olympic village. He is using active release massage on all of my muscles and tendons. Burns like crazy but he said I'm at the point that the muscles and tendons need to be loosen up to help break down scar tissue.
He gave me a two week window. He said he would do this for me for two weeks / three times a week. Either it will help my ROM and he would continue or it doesn't help and he would quit taking my money.

Mike

[kathleenj]

Has anybody had any success with Dr. Gill in Boston for their treatment of arthrofibrosis, scar tissue or patella baja. I thought I saw his named mentioned by someone that was seeing him but I cant find the link again.
Any help would be appreciated.
Thanks

[Lissa]

I am hoping to go see Dr. Gill sometime soon. I am battling with the insurance company right now to be allowed to see him. I have read articles regarding arthrofibrosis written by him, so I assume....he knows a thing or two about it. The articles were co-authored by him and Dr. Millet. I am in the New Hampshire area, where are you? I would be interested in meeting another person afflicted with this condition that lives near by.

Melissa

[kathleenj]

Hi Lissa,

I am also in NH. I actually saw Dr.Gill last year and he said that he would like to scope the knee and clean out the scar tissue. I was reluctant to have another surgery since I've had 3 in just over 1 year and wanted to try to see if I could work thru it. Apparently I cannot since I have developed baja and some pretty severe defects behind my patella now. I was being stubborn but I just wasnt in the right frame of mind to go thru with more surgery. I think I'm at a point now where its just getting worse and something needs to be done. I was hoping to hear that someone has seen him for scar tissue or baja and had some success.

Good luck with getting your insurance to approve a consult with him.
Kathy

[Repartee]

I have written to this forum on various occasions.

I live in Japan and have contacted Dr. Steadman and sent my x rays, etc. to him.

I was told that he generally didn't do surgery for arthofibrosis after a TKR but he might consider it. I have been waiting 6 weeks to be informed and in the meanwhile other places may be getting filled up.

Noyes is on the website for arthofibrosis so sounds good but does anybody else have any other suggestions for anywhere in the States.

Thanks

[KatieO]

Do any of you live near Keene, NH? My boyfriend lives there and I go there frequently. Well, I will be there one more weekend and then I have my own surgery and will be home in MA for a while. I have some version of IPCS and am going to Dr. John Fulkerson in Hartford, CT. Sugery on July 5. I am trusting that he will do the most excellent surgery! Can't say anything about outcome yet!
KatieO

[Lissa]

Hi Kathleen and KatieO!

I am in Londonderry NH. I just got the results from the Independent Medical Exam (the Worker's Comp Doctor) and it was good and bad news. The bad news is that in his opinion, I am going to be permanently impaired by this condition. The GOOD news is, he recommends that I go see Dr. Gill in Boston and have the surgery if Dr. Gill recommends it. The insurance company has not made a decision as of yet whether or not they will approve the surgery, but it looks like they really cannot deny it!!!!! I will keep all in touch. Anyone suffering from this condition in New England is more than welcome to contact me by email, it would be nice to have another person with this condition to talk to in person.

Melissa