anyone know of a good arthrofibrosis OS's in the MD/VA/DC/NJ/NY area

[starpolisher]

Hi Janet! 
thank you so much for the link.....when I tried, I got a different site and this one is much better.  I don't need anymore replacements!  I just need a doctor who knows what I need AFTER surgery to keep my arthrofibrosis in check and it seems like Dr. Shelbourne has a very good program.  At least the posts I read about him sound so promising.  I have 2 new implants in (from last year) that replaced those I was allergic to.  I was sailing along well with my PT but now something has happened.....my knees are stiffening and I feel I need someone like Dr. Shelbourne who will provide me with a very good therapy program to keep the scar tissue in check.  I hear about his elite seat, etc. and I don't mind doing exercises daily if I have to.....I just want relief and to be able to function! 

Thank you for your warm welcome.  I am a bit overwhelmed with trying to move, my son starting college, still recuperating from those 2 major operations last year.  Still on morphine so things are a bit foggy.  Once we move and settle in....and I hope my son's health permits college, I can focus on my knees.  Right now having to have house fixed up (and I can do so little) and hope we can sell it and in such a short time!~  lots of stress.  How are YOU Pam? 

[The KNEEguru]

I would like to do a live event on the internet. This would be a good topic.

Maybe in the near future....
Sheila

[starpolisher]

This would be a great topic!  I am so stressed because it's a big move and I can no longer do the things I could have accomplished in the past.  It's all on my husband.  I know that no one can understand why we are so disabled.....how we feel.....pain in spite of pain meds and tired from them as well.  My husband seems angry all the time.  He doesn't realize the work I manage is so much harder than it ever used to be. My legs keep me from sleeping well......I sleep about 4 or 5 hours and then wake up and take pain meds and sleep another couple of hours.  I want to nap during the day.  So much sorting to do and it's so very hard for me.  My son has a chronic illness....chronic fatigue being among his symptoms.  He's getting better but it's just become so terribly hard to get through life!

[Janet]

Patty:

I know you're not looking for another TKR. I was trying to say that often surgeons that don't do TKRs don't treat post-TKR patients. Again, I don't know if that's the case with Shelbourne.

I understand how you feel overwhelmed. I had such a hard time with my TKR and was in so much barely controlled pain. I couldn't really sleep, so was also sleep deprived on top of being heavily drugged for months. Some days I would cry and just want to curl up in bed and make it all go away. I would just want my hubby to come home from work and give me a hug and hold me. But he would come home stressed from work and having to do everything at home. He wasn't a bad guy, just "clueless" and I didn't tell him what I needed. So we both ended up being very focused on our own problems and not communicating well about what we needed. Just the other day my hubby made  some comment that I had handled my TKR well. He meant it as a compliment, that I had dealt with everything that came my way. But I was flabbergasted! No, I didn't handle it well. I cried and was depressed and was angry that he didn't see it. Those were hard, dark days. Luckily we've both come through them as I have improved. Let your hubby know what you need from him!

I hope you get through the move and your son goes to his college. I know his situation has been such an added worry for you. You've been through so much, I hope you can get your new knee issues straightened out! 

Janet

[missmyknee]

Hi Sheila

I think anything discussing arthrofibrosis would be wonderful. Dr Noyes tutorial and all the articles have been so beneficial, I only wish the tutorial could have been concluded instead of unfinished.  I echoed Patty sentiments on an earlier post. I said in another thread that EVERY OS performing surgery should know all about this complication of surgery. I don't care if it only happens in 1% of patients. When it does happen, it affects and consumes 100% of that patients life. These doctors all go to symposiums, aaos meetings, etc.....arthrofibrosis should be a big topic of discussion, because of it's life changing, debilitating, damaging, affects  In my own case, this should be taught as a complication of Intramedullary nailing with tibial fractures. The knee should be treated as a separate open knee surgery, when doing an IM nail . Cutting thru a healthy knee for distal tibial fractures and not watching out for AF or knowing of symptoms, when reported, is almost criminal. I did not have any knee injury/problem, to begin this never ending journey.

Patty,

Thanks for asking about me...I am still dealing with the nerve issues from AF. I've been with a very good pain management doc/team since last Sept. I'm on a bunch of pain meds, nerve meds to treat the many facets of nerve pain. I am having a lot of loud scar tissue crepitis too. On January 23rd, I had to have a subtalar fusion done because I had no function of the posterior tibial tendon on the ankle/foot of my bad leg. I've been in a boot cast since and just started introducing 1/4 of my weight while crutching.

I hope Dr Shelborne can help with some rehab for you. I agree with Janet concerning whether Dr Shelborne will actually treat a TKR AF, but certainly he could probably outline a rehab program with his PTs. If he can't then you can always see DR Noyes.

We all know too well, how AF affects not only the patient, but the patient's family, work, and friends. It's not a cliche' when saying, try walking in my shoes for a day.

Take care

Pam

[starpolisher]

Dear Pam
thank you so much....it is good to talk to other people who understand!  No seems to get it!  I try to hide a lot from my husband and son because they get so stressed from it.  I was doing so well with my therapy and then I almost think going around on the bike finally....while it initially made difference for the better....the therapist increased the cycles and had me do more in a row and faster and faster.  In a week and a half, the bike became very painful and I cried out from the pain and it was all down hill.....and such a short time.  This stiffness feels like the arthorfibrosis is back; scar tissue being made.  I am terrified....so afraid.  I have panic disorder....I've had a few panic attacks the past few days and it has been along time since I've had them. 

I called the office of Dr. Shelbourne and spoke with his nurse.  She said they are getting an orthopedic surgeon on staff who does TKR's because they are starting to see a few patients now who have arthrofibrosis from their TKR's.  I have to change our insurance but that can be done.  Spent the whole day on the phone with insurance companies, my husband's health care for retirees when we move, and doctor's offices.  i have not called Dr. Noyes.  I believe he is in driving distance of Bloomington, IN as well......Shelbourne is closer I think but Noyes is drivable.  Perhaps I should have all my records sent to both doctors and see what each has to say.  The chance of being a patient of a doctor who is experienced in this is the only thing keeping me going.  I am so scared about what will happen to my life now.  It's such a cruel trick of nature to be going along with therapy and doing so well and now this.....a return of the monster! 

[The KNEEguru]

So sorry, Pam, that we have not yet tackled the end of the arthrofibrosis course. Dr Noyes was willing, but the time was not right and then I got distracted...... I promise I will get back to it.
Sheila

[Sophiepl]

Hi All,

I have a quick question for those of you who have seen Dr. Gill up in Boston, for arthrofibrosis. Has anyone seen him for scar tissue issues with TKR's?

Sophie

[Ses]

This is my first post on this website; so if I am in the wrong area, please let me know.  I am also searching for an os on the east coast who knows anything about treating arthrofibrosis.  In my case, I had a tkr on my left knee due to osteoarthritis.  My original surgeon did a manipulation about 6 weeks after my operation but I built up scar tissue between the time I left the operating room after manipulation until I got to PT about three hours later.  I have also seen a very well known knee surgeon at Penn for a second opinion. My original os has absolutely no interest in patients who don't do well; I had 102 PT sessions, grueling, and he wouldn't let me continue with them because I wasn't showing any improvement.  I had total insurance coverage for all sessions. I am with a new os that was recommended by three of my physical therapists and several of his patients.  He has at least tested me for allergies and infections and is engaged in the process but he says repeatedly that the first time the surgery was done was the best chance at getting it right.   I have an appt. at the end of the month to get his final verdict on my condition which he says is extreme arthrofibrosis.  He seems to be leaning toward open surgery but says I have to wait 18 months from my initial surgery(April 1 2008 - I was the April fool) and that I should try everything else before I have a second surgery to remove scar tissue.

I really empathize with those of you who are having spousal issues.  My husband had been a rock when my parents and his dad were ill; after 37 years of a really wonderful relationship, I feel as if our lives together are ruined.  He is resentful and angry at my lack of abilities. I have even caught him mocking my speech pattern when I am tired and pretending to limp behind me as we go into a store or appointment together!  I was very active at 58, taking care of our farm and  horses, working, doing all our accounting and investing very successfully.  What I do in one day now is what I formerly accomplished in an hour or two prior to my surgery. I was used to lifting bales of hay and carrying them across a pasture. Now I have trouble getting my shoes and socks on.

Like many of you, I take meds that just drain me of all energy although I only take regular tylenol for pain. Sometimes I am a complete zombie. I think a lot of this is carrying an all but useless limb around. For the person with sleep issues, I would try Lunesta even though it is expensive as it has helped me at least sleep through the night.  I have one cup of coffee in the morning to get me vertical. Both my husband and I are being treated by shrinks to combat depression and anxiety. I take xanax very sparingly, once a day.

My pain ranges from moderate to excruciating.  Does anyone else get incredible muscle cramps?  Mine range from my left rib cage to my toes and are totally debilitating, happening out of the blue. I eat foods with vitamin K, hydrate all the time, ice, warm and stretch on a daily basis, but still they strike. And as everyone says, there is general muscle pain, dull and sharp.

I have read about a Dr. Millet who used to be in the Boston area but is now in Colorado who is supposed to be an expert on arthrofibrosis. Has anyone consulted with him? Do I need a referral from an os here?  I know my family doctor would call him, but will that be enough?  I have excellent insurance and I am willing to use my savings to combat this horrible complication.  Like the original poster, I would like to find someone on this coast also.

I am so glad I found this website because in our area, no one else seems to have this problem.  Even my various PTs say they have never experienced a case like mine. I am desperate to get better and have even asked about amputation of my leg but apparently that is an even tougher road to take if the knee joint has to go because of the heaviness of a prosthetic that large.

Hope I have posted in the right area.  ses

[Janet]

Ses:

Sorry you are in this situation. You have an especially difficult case because finding an OS who treats a TKR patient with arthrofibrosis is even more difficult than finding one for a patient without a TKR.

I have two suggestions. First, go to the Knee Society website and search for doctors by state (www.kneesociety.org). These are highly skilled specialists who do knee replacements and are involved in research and problems with TKRs. Second, call a large teaching university hospital and ask which of their surgeons deal with problems after a knee replacement. The large teaching hospitals are usually on the front lines of innovations in treatment.

Janet

[willp]

Hi Ses,

Sorry to hear about your problemsl. I know that many people (myself included) have looked for an AF doctor in the North East.

A Steadman fellow, Dr Hunt,  practices in Bedminster, NJ. I has an operation in Colorado for AF, but developed an infection after my return to NY. He mentions in his patient literature that he's experienced in treating the condition. I only saw him once, so can't make any real judgements as to his experience, but if he trained with Dr Steadman he will be very aware of the condition

His address is 1590 Rt 206 North, Bedminster, NJ 07921. The # is 908 234 2002. This info was accurate 2 years ago, so hopefully he is still there.

Hope this helps,

Will

[Ses]

Thank you Janet and WillP:

I will try your suggestions.  I have my next appt with my local os on the 28th and am interested ito see what he suggests.  No offense to anyone in his profession, but I have found that when confronted with a problem like mine, they will either ignore you or suggest more surgery for which I am not all that sure they have the experience(with arthrofibrosis).  I mean, most doctors want to solve the problems of their patients; so I think these are normal reactions. 

In addition to your suggestions, I am going to contact the Steadman Hawkins group in Vail and at least go there for a consultation.  If they can help me with less invasive surgery, I am willing to use my insurance and spend my 401K on getting help.  I am 58 and hoped to have a life after retirement.  What use is the money I've saved if I can't get anywhere without excruciating pain?  I don't know how others feel, but for me, the pain's the thing...not the limp, not the ugly orthopedic shoes.  Sorry, off topic.  But thanks a lot.

Ses

[Janet]

Ses:

If you are willing to travel, I would suggest seeing Dr. Noyes in Cincinnati. He is one of the leading arthrofibrosis specialists (he wrote the tutorial on AF on this board and many of his patients post here), and I know he does TKRs along with other surgeries. I believe Sharon (skibum) is one of his patients, as is Pam (missmyknee). I hope they see this and give you more info.

Janet

[willp]

Hi Ses,

I can't say enough good things about the Steadman Hawkins clinic - they gave me my life back. But Janet may well be right when she says that they might not deal with patients with TKRs. They are very helpful though, and you can contact them directly to find out. If they do, I would recommend them 100%.

I went for a second opinion with Dr Noyes (after having one OS mess up my knee and no surgeon in NY having any idea of what was wrong I wasn't going to take a chance) . It was only one consultation, but I was very impressed, and I'm sure you'll be in excellent hands.

Good luck!

Will

[Ses]

I have contacted Steadman Hawkins in Vail and they are very helpful.  I thought I might see Dr. Millet since his was the first name I encountered when I started to research arthrofibrosis but the people at the clinic suggested Dr. Steadman unless I had to get there sooner, then Dr. Millet.  These people seem genuinely interested and professional.  I have had several calls from them and they will be calling to schedule an appointment within two weeks for a later date. 

For an update, Dr. Steadman will work with people who have had tkr.  I am guessing that with people doing more of their own research on the internet on their conditions, perhaps it's becoming more obvious how many tkr patients have this condition.

Has anyone else ever heard the theory that those of British descent are more prone to this condition?  I am first generation Welsh-English on my mom's side and potato famine Irish on my dad's side.  My grandmother, mother, aunt and uncle all had limps.  First two from bad knees they wouldn't have replaced; my uncle was hit by a laundry truck in the 1920's(who knows what his leg actually endured in surgery?) and my aunt had polio in 1911 so her problems stemmed from that condition. Since all of them lived into their 90's,  I have taken care of people with leg braces, walkers, canes and wheelchairs nearly my whole life but never felt I'd be in the same position.  At least treatment for these conditions seems to have progressed.

Again, thanks for all the info.  I am looking forward to solving this life consuming issue.
Ses