Arthrofibrosis Research Being Done Anywhere????

[missmyknee]

Hi Russ

I can't tell you how to treat your daughter. If it was my daughter, I would begin by looking for a pediatric orthopedic specialist or pediatric patellofemoral specialist. I don't know where in Florida you are located, but I just did an internet search. There is the Arnold Palmer Pediatric Orthopedic Specialty Hospital in Orlando. As I looked at the doctor list, I came across a doctor Jay Albright. He did his fellowship with Noyes. In fact, he took care of me during my first surgery with Noyes, what a small world ! Anyway, I would search for pediatric knee specialists , if it were my daughter.

There might be a pediatric knee specialist where you live.

Pam

[captainruss]

Pam,

I am in St. Pete. Orlando is about an hour away, in fact I had 3 of my TKR's in Orlando. I appreciate the recommendation. The fact that this doctor worked with Dr. Noyes is fantastic. I am going to see if I can visit him also! You are such a wealth of information.

I am not sure if this doctor is an AF specialist, but his access to Dr. Noyes is a bonus. I was comfortable with my current OS treating my daughter until he told me he does not know what to do for me. I never expected that of him and if he will give up on me, I don't want him treating my daughter.

Thank you. I wonder if you tire of so many people leaning on your intelligence. You are so much more knowledgeable and accessible than any OS I have ever met.

Russ

[captainruss]

Pam,

If you know of any other OS who trained under Dr. Noyes, please let me know. The same goes with Dr. Dellon. If I can't afford to see the original, maybe this will work.

Russ

[missmyknee]

Hi All

I saw this link posted by KNEEguru in a different section. I thought I would post it here as a resource for articles.

http://www.jbjs.org/patients.aspx

Pam

[captainruss]

Pam,

I actually have looked into the research trials they are currently conducting and have asked for more information about possibilities of being part of those trials.

Thank you and thank to the KG of OZ!

Russ

[missmyknee]

Hi All

I found this thread by EdD in 2008, discussing his treatment for inflammation:

Fighting Inflammation with Omega 3 fats and other supplements
https://www.kneeguru.co.uk/KNEEtalk/viewtopic.php?t=3

Pam

[starpolisher]

Pam,

I've long heard that the omega supplements are great for inflammation. I used to take them some years ago and then had a bad setback with my panic disorder (hereditary in my family). Took part in study at Columbia and those who have the hereditary type .... well they are trying hard to distinguish panic attacks from anxiety disorders and genetic panic disorder and have come up with some faulty chromosomes. Being very sensitive to meds and all sorts of innocuous things is common in this. I can't tolerate any omega capsules and am allergic to seafood (even fish) but walnuts are a very good source of the omega oils and it's the one thing that doesn't bother me! Flax is a good source but allergic to that too.....so frustrating. But I have been daily putting a handful of walnuts in my oatmeal and it seems to help....not quite as effective as the one time capsules and the flax cereal I used to eat (over 10 years ago) but walnuts really do help. So for anyone who has seafood allergies or troubles with supplements.....try walnuts. What is odd is I even tried currant capsules (also an omega source) and not allergic to currants....but got so sick from the capsules. weird....wonder what it is? Have been resting from Astym for 1 1/2 mos and doing well....though I was too optimistic and tried weeding my garden 2 days in a row ..... Wow....what a setback! very hilly yard and really aggravated my knees. No more weeding I guess. But a year ago I could never do that at all. I will resume a series of 10 more astym treatments in May and see how I do. I think I am past the halfway point in terms of what scar tissue can be broken down. I have cut back more on my morphine as well....The 3rd series really seemed to help a lot. I hope I don't mislead people by thinking I am close to normal....far from it.....but I can get around and do things for longer periods and definitely less pain.

[missmyknee]

Hi Patty

I am so happy you continue to see what a difference Astym has made in your life. That's too bad you can't take the fish oil caps, however you were able to find 2 other alternatives for Omega oils , walnuts and flax seed.

Best wishes

Pam

[captainruss]

Pam,

I put the flax seed in my protein shake. It helps out well. Thanks for the link on Inflammation. I wish my OS could tell Inflammation from AF apart from infection.

Russ

[ziggy]

Hi Star

I have been of the forums for sometime (just got dispondent I suppose) I have read about Botox as a possibility of reducing arthrofibrosis. I am still struggling along as well. Had my right knee done about 10 months ago and developed peroneal palsy in that leg as well. So two foot drop braces and probably on crutches for life. Hope you are having better luck? Seeing your post I presume not. Some interesting posts to your question but all seem to be at rat/ rabbit trials which means not in my lifetime.

Best regards

[captainruss]

Ziggy,

In your list of operations in the signature section you list scar tissue debridement in 2008? Is that the last time you had scar tissue removed? I see you are using ASTYM, but do you still suffer from AF?

I have AF and HO and I am really suffering. It seems like the hotter it gets here, the more it grows and the tougher it is to stand/walk.

Russ

[ziggy]

Captain Russ

AF continues to be a problem but peroneal paralysis in both legs at the moment seems to be a more pressing problem. My right knee which I had TKR done last year seems to be ok regarding AF but left one still does not bend much. I still go to physio weekly sometimes twice to get trigger points stimulated and dry needled. I have got used to every pain killer thay can find so no more relief there. I am currently taking 20drops of Valoron twice a day, temgesics and synaleve for pain. Also 1600mg Brufen and 20mg of valium 2 x day for spasms. Oh and tramal SR 200mg twice a day. My rheumatoid factor is about 90 and vit D approx 10. They also have no answers for these results. My immune system is lower than normal but because I do not ever get sick they are not concerned with that.

Ok so that is an update on history I think my visits to the physio just make me feel a bit better that I am trying something. AF continues to be a problem. I have experimented with Methotrexate hoping it would help, the short answer is it does not. I have wriitten some emails to DR Peter Millet in Vail and he also does not know what can be done. The biggest problem seems to be the more they try the worse the AF becomes. I have done a lot of research into the causes and possible cures have even tried Adcon gel during a peroneal nerve release where the scar tissue had grown through the nerve sheath and strangled about 10cm of peroneal nerve. Adcon gel is used to stop scar tissue developing after spinal surgery.

A part of me is learning to accept pain and disability (Cannot walk without crutches and foot braces) as a part of my life. It is frustrating and I hope that one day they manage to find a solution. I have read about botox and AF but it has only been tried on rats and rabbits. I think this will be the next thing that I will push for as it is available and could make a difference. Not sure if any one on this forum has tried it.

Good luck I hope you have more success than I have.

[captainruss]

Ziggy,

In all honesty, your OS has provided you with many more forms of treatment than I have been provided. I am actually going back to my OS tomorrow as I can't stand my knee anymore and will print a copy of your post. Frankly, my OS has just started wrapping his head around the fact that my knee has AF and is not infected. It has been a one year process to get him to understand the 30-50 cultures/tests for infection all coming back negative might suggest no infection.

My immediate problem is not the scar tissue, but bone growth. (Heterotropic Ossification). I actually have bone actively growing between the layers of scar tissue. I am not sure why, but both of my legs are now swelling. With the AF, only my right knee would swell. Now, both of my legs swell from my thigh to my foot and my toes are so swollen I can't feel them. I took my kids to Universal Studios today with a walker and within five hours (large amount of oxycontin, lidoderm patches, flector patches, and oxycodone) I was in severe pain and could no longer put weight on either of my legs. Even my good leg (no surgery) is so painful. I have shooting pain up the leg and have no idea why?

My OS stated months ago that he could do nothing for me until the bone grows completely (up to 2 years) and then he would excise it and treat me with radiation. I am scared of the radiation as one, I have had so many tests (indium three phase bone scans) etc. that I pretty much glow in the dark already.

He also stated that I am on antibiotics for life. I was given a pick line after each surgery. I was given vancomycin after each surgery which is so potent they must inject it into my heart thru the pick line because it will dissolve blood vessels. My second OS told me despite the cultures coming back negative, that if I allowed him to do TKR #3 he would get samples from inside my leg bones and tell me 2 wks after taking out the joint what my exact infection was? Well, after 2 weeks the cultures were all negative. He actually ignored me leaving me on vancomycin for 13 weeks, not the 6 week maximum I now know to be the limit.

I have suffered with pneumonia and if I stop taking the antibiotics for three days...I get ear infections and immediately sick. I am also trying to obtain treatment for my daughter. We are seeing a doctor at All Childrens Friday (John Hopkins affiliate), We are seeing Dr. Xerogeneses at Emory College on May 21st, and June 12th we are going to Michigan to see Dr. Tietge. I am hoping to stop in and see Dr. Frank Noyes in Cincinnati on the way to Michigan so that he can look at my leg. He comes very highly recommended.

Please understand that despite the dark picture I paint, I am one of the 1/10th of one percent of TKR patients who have these kinds of complications. The majority of TKR patients are very happy and have no complications.

I DO understand what you are going thru. I was much better after my last surgery and 50 days of PT. I had thought that AF was the most painful condition I had ever experienced in my knee, but the HO has it beat hands down.

I also understand about the pain medication. I take a scary amount of oxycontin, oxycodone, opana, soma and zanaflex as muscle relaxers, ambien and restoril as sleep medications, lidoderm and flector patches as topical pain relief plus I get constant dilaudid in my back thru a spine pump. It does nothing to help and I am frustrated. I must now find a new PM because the one I have went an entire year without billing my insurance only to find that my insurance will not pay him because he is out of network.

I spent 6 months trying to get in with this guy. I gave him my insurance with my MRI's, CT's, X-Rays and finally was approved. He knows he is not a Blue Cross Provider but his accounting lady (in Arizona...we are in Florida) thinks she can get him paid regardless. Now he tells me after a year that I have to find someone else as he can't treat me without getting paid. Anyway...I am going to stop here as my posts get too long.

I know what you are going thru...I just don't know what to recommend.

Russ

[ziggy]

the only thing I can say to you is that you have to do the research and take it to the doctors, If you can get to see Dr Noyes that would be fantastic as he seems to be one of the few that understands the knee processes, I live in South Africa so have a limited number of OS's that even know what AF is never mind treating it,

I have struggled and researched for the last 10 years so I feel for you. It is very frustrating dealing with OSs that do not understand and say things like you have a low pain threshold. See Dr Noyes if you can he has helped so many people.

Wishing you all the best hope you post your outcomes.

[captainruss]

Ziggy,

South Africa....that is cool. A whole continent away! I was telling my kids (I am old) that the wonders of going to college with the Internet is unbelievable. When i went to college after high school...a couple or three decades ago we had no computers. Actually, we did have a computer but it was the size of a 2 car garage. We had to punch cards for each command and feed them into a card reader. Now all they have to do is google an answer or go to purple math or wolfram alpha to get their answers.

Yes, I have high hopes with Dr. Noyes. I am also going to see Dr. X at Emory College in Atlanta. I do not know for sure, but I have heard that Dr. Noyes will consult with you if you can send him your film reports and surgical notes. We are so fortunate to have the medical system we have and our illustrious (hopefully one term) President wants to give us socialized medicine.

The really sad part is our war veterans who were promised health care must be at the poverty level to get it and 40 million non working stiffs in this country will get it for free. It really makes me angry. Our country has been consumed by the entitlement crowd as half our society wants to be cared for from the cradle to the grave.

My biggest problem is the OS's do not know what to do for me. My doctor yesterday ordered tests.....both my legs swell despite only one being operated on. He is just throwing darts at blood clots, infection, immune system problems, and more. I have 10 different tests I have to take because they do not have any idea what to do. I respect him though....he told me truthfully he has no idea what is wrong with me and no idea how to treat me....so he must test me for anything/everything he can think of.

If you get time....I am very interested in your country. Please tell us more about South Africa and your medical system. In Florida, I have not found one doctor who is knowledgeable with AF? Do you have any OS in South Africa who know/understand the complication?

Russ