"Arthrofibrosis Specialists"

[Jaci]

Melissa,

I wouldn't be too worried about the IME assessment that you will be 'permanently impaired.' Unless he was an orthopedic with significant experience with the condition, he's probably not really qualified to make that statement. I don't think that even one of the 'experts' could make such an assessment at this time, there are just too many variables and unknowns. It's great though that he didn't just blow you off as needing psychological help or being a malingerer like has happened to many of us. So, in some respects, the statement is good news because it will help you to get to see someone who most likely can help you.

I'm really glad that it sounds like you'll be seeing Dr. Gill. Keep us posted!

Take care.

Jaci

[Janet]

Melissa:

Congratulations! That is good news that your IME doctor said you need further treatment. I agree with Jaci that you shouldn't worry about the "permanent impairment" part. Just be glad he recommended further treatment. At my last IME, the doctor said I had definite problems but didn't think any further treatment would help, so WC refused to pay for my care with Dr. Wojtys. The weird thing is, they wouldn't pay for more care, but left my case open because "there was still arisk." Lucikly, I had private insurance that kicked in and I got the treatment I needed.

I go for another IME on July 11. WC hasn't paid for anything for three years, so I have asked them to reconsider and pay for the knee replacement I now need. It seems like a slam-dunk to me, but we'll see. My experience with WC has left me very leery.

But you got the answer you needed, so congrats again!

Janet

[kathleenj]

Melissa,

Glad to hear that you may be seeing Dr. Gill soon. I still havent made an appointment yet. I'm just very reluctant to have any more surgery althought I know I'm at the point that I need it. The thought of being laid up for some time gets me very nervous but I suppose I need to just bite the bullet and call for the appointment. The knee is only getting worse...

Katie, Good luck next week with Dr Fulkerson.

Keep posting.
Kathleen
BTW Melissa....I'm only about 20 minutes west of you.

[Lissa]

Hi Guys,

I just got back from vacation....went to Ossippee Lake for the week. It was a great time, but boy am I tired!!!! The leg swelled up pretty good too. We spent the week with my family who hasn't seen my leg since it was injured and could not believe the condition I was in. But had a good time anyway! The insurance company finally approved me to go see Dr. Gill. So, I will be making an appointment on Monday. I will keep posting my updates as I get them.

Kathleen, if you ever want to meet up at a Dunkin' Donuts some day for coffee or whatever and we can chat I would not mind meeting someone else who understands this thing!!!! Just let me know.

Hope everyone had a safe and enjoyable 4th of July! Melissa

[pgmigg]

Hi everybody,

I saw Dr. Noyes from Cincinnati this March and he recommends me Dr. Tomas Sculco from Hospital for Special Surgery in Manhattan, NY as excellent Arthrofibrosis Specialist. I live in northern New Jersey and Dr. Sculco is my current doctor.

I am happy with his knowledge and experience. I believe that in my particular case (after 3 months of my first TKR I was diagnosed with very aggressive Arthrofibrosis - ROM was 25 - 65) it was absolutely right decision to make TKR revision. Dr. Sculco changed a type of artificial knee and reduced a size. Then in 8 weeks after I loose my ROM again from 3 - 90 to 10 - 72, he made my first MUA - he bended my knee up to 105 degree and probably will repeat it in the nearest future. He is going to bend it up to 120 degree. My current MUA experience was successful - I have now an active ROM 3 - 98 and passive 10 - 92.

So, my opinion is to add to this list Dr. Tomas Sculco.

Thanks,
Ilya

[brycemorris]

Hi everybody,

Interesting to hear about Dr. Sculco in Manhattan, as I've been looking for a
specialist here. But I already had an MUA and had 2 microfractures. It sounds
like Sculco might be a little aggressive. What's the word on MUA on this
forum? I still have cold flexion at about 60 and with PT at 95, although my
therapist keeps saying there are no hard stops in my knee. I'd still like
to see a specialist and have thought about going to either Boston or
Houston, as I've said.

best to all, Bryce

[Janet]

The word on MUA for a patient with arthrofibrosis is "Run the other way!" It is totally contraindicated for arthrofibrosis patients.

Janet

[pgmigg]

Dear Janet,

I guess that every case is unique!

In my particular case, Dr. Sculco mentioned that he was going to make a few small MUAs. Other words, he could bend my knee up to 140 in a one MUA, but he decided to bend it a little and see how it will be. He bent my knee up to 105. Next day I was discharged from a hospital with CPM and during last three weeks I have been spending 4 hours per day in an average on this machine.

The procedure was done under epidural anesthesia and then I took pain medications as needed during a one week. The pain has not been bothering me too much. Now I have a passive bending up to 92 and an active up to 105 on CPM. In a week I will see Dr. Scuclo again and probably he will be going to make another MUA up to 125…

I red a lot of posts about MUA and why it does not work. I was afraid a lot this procedure. But now I see that it works, at least for me…

Sincerely,
Ilya

[Jaci]

This discussion comes up frequently, but it bears repeating: TKR is a different situation. One reason is that OS are often hesitant to scope a TKR knee because of the greater risk of infection. I know other reasons have been discussed, but don't remeber them off the top of my head.

A search for MUA using the search feature above will bring up the various threads where MUA has been discussed.

Jaci

[ArthroConquerer]

Hello Everyone and compliments to those of you who have gotten progress with arthrofibrosis, you are a warrior.

I had a mountain biking accident about 3.5 years ago. I was in bed for a year and had a fram on my left leg for a year and 3 months and was stuck at 15 degrees. I could not do aggressive therapy until I decided to have my Femur roded, at the time my leg had not move past 30 degrees for a year and a half. I worked with an amazing therapist and designed most of my therapy and after some BARBARIC therapy for 2 years I have gotten to 140. I wake up with 105 and 15 degrees in extension. After therapy I get fully straight but it does not stay and can get to 140 after an hour of therapy but it does not stay. I am considering one final orthoscopic with the possibility of PATELLA TENDON LENGTHENING to gain a little flexion. I am considering Doctor Eppley from Alta Bates hospital who is considered within the top ten Orthopedics in the Nation. And I am also considering Dr. Colin Eakin can anyone give some feedback on wether he does Patella tendon lengthening, and what he did for their therapy post op. I think a true champion doctor of arthofibrosis will be heavily knowledgable in post of daily therapy techniques. Post op therapy is more than half the battle.

[brycemorris]

Hi everybody, especially Queenie and others in the NYC area,

I've just found an awesome OS in NYC who has treated severe arthrofibrosis
patients with success. He's Dr. Answorth Allen at the Hospital for Special
Surgery. He's supposed to have great hands!

Bryce

He's also the Knicks' OS, but I know that doesn't count for much among
those of us with the affliction.

[hottubpam]

ArthroConquerer,

I don't understand why you would want a patella tendon lengthening procedure if you have "conquered arthrofibrosis", nor do I think many doctors would think it was indicated in your case - just IMHO. If you have flexion of 140 a MAJOR surgery such as PTL seems a bit like overkill to get a few more degrees.

But to answer your question, I am a patient of Dr. Eakin and he is considering a PTL for me, my flexion is only 115 however and I still have considerable limitations due to pain. Dr. E also does not believe in MUA's or barbaric therapy so that may further complicate matters for you.

Let me know if you have any questions.

Pam

[ArthroConquerer]

Dear Pam thanks for your reply. I appreciate you taking the time to repond to my post. I can get 140 degrees after about 1hour and half of aggressive therapy. So I was aksing about PTL to see what it entails. I don't know much about the procedure so that is what I am finding out. I want to wake up with 115 and with 0 degrees in extension. I wake up with 15 degrees in extension and I can get to -1 with 30 min of aggresive therapy. I am consider myself Arthoconquerer is because I started with only 15% and doctors gave up on me with I got to 38 40 degrees after an open surgery to clear out scar tissue and attain flexion. I had to design my solutions for therapy there after. Three top orthopedics in the BayArea will contact me as an Arthospecialist in the rehab portion. So I am now looking into PTL not because some doctor advise it but because I am always searching for possible solutions. I have an Appointment Dr. Eiken on August 21st. After 30 min of therapy in the morning I can function with 5 degrees extension and 120 flexion. Thanks again for the feedback. Good luck with your situation. Ask Eiken how much he knows about the post-op therapy the more the doctor knows about the therapy the better your chances of success.

[hottubpam]

ArthroConqueror,

I guess it is a matter of semantics. I have - 1 degree extension and 116 flexion WITHOUT any warm up PT, etc. yet I do not consider myself to have conquered arthrofibrosis. For many arthrofibrosis sufferers myself included, I believe your form of aggressive therapy is contra-indicated.

Wishing you all the best with your appt. with Dr. Eakin later this month.

Pam

[stgiles16]

My OS and PT are also strongly against AGRESSIVE Pt after surgery or any other time. It just inflames the knee and creates more scar tissue.

missy