Arthrofibrosis Research Being Done Anywhere????

[starpolisher]

Haven't posted in a while. I'm back having astym with the addition of using a tens unit on the "bad" knee....the one that has the most scar tissue. I am going two times a week now instead of once to see how I do. I had attempted to weed my garden (first time since 2005) and WOW....big setback. After 3 treatments the swelling has already gone down and feeling better. I have a tens unit for home....actually it's new! It's a black wrap around with the electrodes in the cloth and belts that hold it in place with velcro. It has helped my pain so much! I don't ice anymore....have gotten to the point where I felt so stiff afterwards. I can even walk around with pain relief with the wrap around on and it seems to keep the pain at bay for quite some time afterwards.

I will never garden again! I have to be careful......if I feel better I sometimes tend to overdo and pay for it....usually it eases off after a few days or so but not this time....was miserable the month of April and finally am having my astym again. Still have scar tissue to break down. Amazing the relief those treatments give me. The tens unit is wonderful too!

I was in the process of cutting back another morphine tablet when this hit and after several weeks I couldn't take it anymore and had to take the pill for more pain relief. Now am back trying to cut out one more pill. My pain mgt. doctor tells me I'll never be able to totally give it up.....been on it so long and the astym can't get into the actual joint. I feel so much better though, mentally, when I can cut back on the morphine...just hate the stuff!

Russ, I read about all your pain control meds.....you (and everyone with AF are in my prayers......so hoping for a cure! So sorry you have that other complication....worse than the pain of AF.....I hope you really get pain relief.

[captainruss]

Star,

Good to have you back! I hope you keep having success with that ASTYM.

Pain relief is a difficult issue. I am not looking for another PM as my current one lost his Blue Cross and won't treat me because he can't get paid. He did not do (accountant) the paperwork and my Blue Cross pays really well, but not out of network.

Russ

[missmyknee]

Hi All

Here is a link to an MRIweb clinic discussing patella baja and patella alta, as it appears on an MRI

http://www.radsource.us/clinic/1008

Pam

[missmyknee]

Hi All

Here is a power point presentation on arthrofibrosis , at the 2012 Knee conference in Portugal

Val dIsere 2012 Stiff Knee

https://docs.google.com/viewer?a=v&q=ca ... nSHtRVSBPQ

Pam

[missmyknee]

This article is about the evaluation and treatment of disorders of the infrapatellar fat pad by Dr Jason Dragoo. He did his sports med fellowship under Dr Steadman, who is one of our AF experts. Dr Dragoo is located at Stanford medical.

http://med.stanford.edu/profiles/ortho/ ... 6&fid=6975

Here is an in depth article by Dr Bernard Bach, on arthrofibrosis following ACL reconstruction

www.bachmd.com/Files/arthrofibrosis%20f ... ACL764.pdf

Here is a good power point presentation on Manual Techniques For The Knee

https://docs.google.com/viewer?a=v&q=ca ... lwidYvJpGQ


Pam

[captainruss]

Pam,

I am so depressed about not having many options with my knee. The options for those of us with AF is so minimal. I can't afford to transport my fat butt to all ends of the U.S. for treatment. I am thinking an amputation again not having any other options.


Russ

[starpolisher]

Dear Russ,

I'm so sorry to hear you're so down. I know......I've been there off and on.....on for a long time. I don't have as many complications as you do re your knees (no ossification of the bone or RSD).....and yet lived with awful pain from 2005 until I started my Astym in 2011.....and at least my pain level wasn't nearly as severe. I hated just having to go to the bathroom.....just the walk to the bathroom from the bedroom...... My son has had poor health for a long time and that makes life so difficult. But at least my pain has eased.

[missmyknee]

Here is a 3 page article on anti-inflammatory diet:

http://www.jaapa.com/an-anti-inflammato ... le/224941/

Pam

[starpolisher]

Excellent article Pam....and it's so important to have this information. I am allergic to seafood but I used to eat flax cereal and take Omega supplements. The weird thing about having panic disorder is it's not uncommon to develop tremendous sensitivities to foods, chemicals, skin creams, meds, supplements, etc. But at least I am able to get my omega oils in olive oil, walnuts and avocados. I rarely have red meat....usually the white meat of chicken or turkey since I'm allergic to even fish...not just shellfish. I have a severe case of rosacea that nothing will contain except laser surgery (to destroy excess blood vessels). Besides AF, I wish they'd come up with a cure for panic disorder!

[missmyknee]

Here is an article about a survey of surgeons on adhesion awareness. It pertains to abdominal adhesions, but can apply to the knee too

http://www.ncbi.nlm.nih.gov/pmc/article ... ool=pubmed

Pam

[Don_Draper]

Long time no seen.... My situation was evaluated in december 2011 and due to AF and other factors, it was decided that my patella cartilage was not to be fixed by ACI. I was disappointed but on the other hand most likely the right decision. To much remaining scar tissue, weak muscles and still recovering from the previous ops. Now also mentioned patella baja. TKR will be next stop one day

After using glutamine and NAC for a long period I noted a certain dryness in the skin and other tissues so decided to stop using NAC spring 2012, and it helped. Now only using glutmine and whey proteine. My ROM has still improved, despite the fact that the cartilage is deteriorating causing inflammation and some times severe pain. I do believe will get close to 95 % ROM within 1 years. Dont have much of the HOT knee and its not much swollen either these days, but as the patella is partly bare bone, load is pretty restricted. The shape and size of patella is different than it used to be, no doctor has commented anything on my question why its so. However the movement of the patella has improved, its not like solid concrete any more, can move it around little, but not nearly as much as it should. Structured FT i don't do so much, but trying to be very active in various hobbies on my spare time, trying to forget the restrictions i have. It seams like gaining some strength in the affected knee, but still muscle mass is totally out of speck, somehow it looks like AF restricts muscle growth?

I am now sure that i developed AF even before(checked some old FT docks) any operations, after prolonged time of inflammation and pain. I do also believe in mine case glutamine and NAC has helped, however i would not use NAC in high doses continuously for prolonged times as side effects are not studied enough. Time has helped, I can do more now than in 2011, and quitted using any pain killers. The reason is that get relief only from the strong ones and they have to much down side compared to the relief they give. One day might do another decision but so far so good.

All the best

All the best

[carolelinda]

Starpolisher: I have been suffering from severe arthrofibrosis ever since my TRKR in July of 2006. After a partial revision the following year, the problem got even worse, despite my physical therapist working with me for ONE YEAR and my trying everything to alleviate the unbearable stiffness which I still have. I recently returned to the Hospital for Special Surgery in Manhattan where I had my surgeries only to be told by the one surgeon who agreed to see me, that it's "like cement - once it's there it's there for good".......This response is not acceptable to me. Sure, most people have successful stories to tell, but what about we patients who develope this daunting and awful condition? Aren't doctors doing ANYthing to help us? I hate the thought that I have to live the rest of my life not being able to bend my knee more than 80 degrees, not being able to get in or out of a car without a problem, or sitting in an airline or theatre seat without extending my leg out. I would never want to go through another surgery. I had no idea I would be a patient who would develop such thick scar tissue .
I've heard of a method called ASTYM and have spoken with some patients who have had some relief from treatments however, no one in my area of Long Island knows of it -- why doesn't the HOSPITAL know about it?
Even if I could get a small amount of relief from this stiffness I would be happy.

[greatfulgann]

Carolelinda has the AF caused only a flexion deficit for you and what about your extension? There seems to be different levels of severity in everyone with AF. Have attempts been made to remove it? Does the stiffness relent at all as the day progresses? I agree I am shocked at how little is known about this even among top surgeons!

[starpolisher]

carolinda.....
Please go to the Astym website......www.astym.com. There are a number of links and you can call them, toll free or email them with your questions. They are great about getting back to you within a few days! We know they did a seminar in the NYC area....what the heck is wrong with HSS orthopedic doctor not knowing about Astym. I sometimes wonder if Graston (which came first) may have turned some doctors off to Astym. You can get your information about Astym ..... where you can get it done closest to where you live ........ by emailing Astym and asking them. They will know who is doing it in your area and what doctor is prescribing it. I sure am glad I moved from NY to Indiana!

My knees are so much better! I have AF in both knees but my biggest problem was awful pain and no life! The Astym eased my pain over a year of treatments. My Rom is not great.....it was 70 and is now 80 although they don't push my knees....they let me bend them and straighten them. Sorry I am not great about my extension.....also not great......but the pain relief allows me to do a lot more. I can tell there is a lot less scar tissue because the skin over my knees is much looser and it used to be so tightly stretched. Please contact Astym; they are very familiar with my case. I know others have had astym. One knee took longer to break down.....the scar tissue was denser. This last time they did it twice a week iinstead of once a week and were more aggressive. It did hurt but not as much as the pt I had after all those operations! I have panic disorder and my panic flared.....by taking extra panic meds, my muscles really relaxed and my knees felt a lot better. I don't know how I could have continued on with the pain I had from having so much scar tissue in both knees. The astym has been a God send! Also, I made sure I asked my pt a lot of questions and she in turn talked to the Doctor who developed astym and gave her a lot of advice. PLEASE contact Astym and even if you have to drive a while....it is worth it if it helps you. I used to drive 1 1/2 hours one way for my therapy (which didn't help that much) and am lucky I have a pt in the town I live in that does astym....but it's common here in Indiana since it was developed here.

[missmyknee]

Here is a very intricate explanation of what goes on in the body during the healing process

http://www.auraresearch.com/scar.htm

Here are some flashcards on the inflammatory process

http://www.flashcardmachine.com/inflammation6.html

Treatment on the horizon

http://www.fibrogen.com/fibrosis




Pam