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ESwift
New Member


Date Joined Mar 2012
Total Posts : 2
   Posted 3/4/2012 5:38 PM (GMT -6)   
Im 23 years old i had My 1st and only tumor taken out of my left knee jan 2010. Its mar 2012 now and im still dealing with related pain from all this. The pain in my knee itself is managable most of the time how ever its my left ankle, schin, lower back and upper left back and now my kneck that is all messed up and giving me every noise oain and problem it can. In my non expert opinion i had the PVNS tumor since a child i recall going to the docter of knee pain at age 12 and in 2002 as well i recall complaining of knee pain.
i feel like when you are housing a foreign object in your knee joint for 15 years it will have a great effect on the muscular and skeletol engineering of your body. I DONT KNOW WHAT TO DO every docter ive seen 3 tells me that i am young just need to stretch and rehab more. I do stretch and rehab is costly and time consuming. I do plenty of home exercises. I do not recieve any pain medications other that IB profin 800 but hopeflluy the next doctor will consider a mild narcotic. I know 23 is young to b administered pain meds but i truelly dont know what else to do.

ESwift
New Member


Date Joined Mar 2012
Total Posts : 2
   Posted 3/4/2012 5:41 PM (GMT -6)   
does anyone know of any group or club you can belong to if you have pvns and does anyone have any suggestions on how and who i should see to manage my pain. Does any1 else have back and leg and neck problems that they attribute to a pvns diagnosis in thier knee or ankle or hip?

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16779
   Posted 3/5/2012 4:54 PM (GMT -6)   
Hi ESwift and welcome to the chronic pain forum. I am sorry to read what you have going on and you don't feel you are getting the answers you need. I am not well versed in PVNS, I know a little a bout it. What little I know is it generally hits in the knees and hips and some people may require surgery for the condition. As far as it affecting the other parts of your body you are speaking of, I have no idea.

I am not sure how much you know about pain mgt and what all has taken place in the past couple of years or so, but getting a dr to rx a narcotic is a very difficult situation for many people. There are new laws and guidelines in place that drs have to go by and many drs have stopped writing scripts for narcotics because of all the red tape and hassle. Couple that with you being young you may be in for a very difficult time getting a narcotic rx'd.

Something you may want to consider is being seen in consultation at one of the teaching hospitals. Many times those drs are able to pick up on something another dr overlooked. Since they are a teaching facility they have access to more medical avenues than a regular dr will.

I do hope you can get some answers and soon. Take care.
Moderator-Chronic Pain Forum
Moderator-Psoriasis Forum

Heather Lynn
Regular Member


Date Joined May 2011
Total Posts : 283
   Posted 3/7/2012 10:45 AM (GMT -6)   
Hi ESwift, welcome to the forum.

It does sound like you need some sort of rehab to help "rebalance" your muscles and the way you move now that the tumor is gone. But I also understand your concern about it being expensive and time consuming. I don't recommend books on the forums often, but you might want to check out "Pain Free" by Pete Egoscue. It is a book of exercises that are basically aimed at getting both halves of your body working together again and getting everything balanced. The book itself is a bit of a dense read, but then it is filled with exercises by part of the body. I would start with whichever part of your body gives you the most pain, and work from there.

I also think straydog's advice to look into a consultation with a teaching hospital is a good one. They will be able to consider the full range of things that could be causing your pain. This could all be from the PVNS or it could be pain from something else too.

I was also pretty young when my pain started, and I have tried to stay away from narcotics as much as possible. My main reason is I don't know how long my pain will last, and I want to have treatment options in the future. My primary pain med right now is naproxen 500mg (very similar to ibuprofen 800mg), and I supplement that with Tylenol. I do have a small quantity of Tylenol #4 (Tylenol with codeine) for really bad pain days.
Fibromyalgia, low back pain/SI joint dysfunction, anxiety, obstructive sleep apnea, endometriosis, asthma

Kat-Jo
New Member


Date Joined Mar 2012
Total Posts : 1
   Posted 3/22/2012 10:36 PM (GMT -6)   
Hello, I am new to this site. I have a 2 year old daughter that was just DX with PVNS. I have been looking and reading and researching everything and everywhere that I can think to find answers or to even find someone else with a 2 year old with this. I have not found anyone. Information is slim. She is in alot of pain. She had knee aspiration 3/ almost 4 weeks ago now and it seems to have gotten so much worse. No tissue biopsy was done only 10 cc blood taken out of her knee. Has anyone else had DX with out tissue biopsy? My concern is what if it is cancer, can a blood sample from knee rule cancer out? We tried to get her into Shands Hospital in Gainesville Florida, we are from the West Palm Beach Florida area. I had heard about Dr. Carter Gibbs, I faxed him all of her records and he is referring her to Dr. Jofe in Joe Di Maggio Childrens Hospital, which his office staff said he does not treat this, I am confused why Dr. Gibss would refer her there if Jofe does not see anyone with this. We have an ortho but he does not seem to have the experience in this disease. Please please if anyone on here can give advice or direction to where we should go or what we should do or if you know of anyone that has gone thru this with a child so young please please please email me belcourtkathy@yahoo.com or leave me a post on here. I am given you my email because I don't want to miss anything and want to make sure I get any and all answers that anyone can please give us! Blessings!
 

Catmille
New Member


Date Joined Mar 2012
Total Posts : 1
   Posted 3/23/2012 12:20 PM (GMT -6)   
Hi all, I too have PVNS. It's in my right shoulder which I understand is pretty rare. It started about 12 years ago when I was 25. It was removed via an open surgery and I did the typical physical therapy to recover. I thought it was a ganglion cyst, I didn't realize it was PVNS and the doctor was not very clear about it, he never told me it could reoccur. During the last 11 years it's been ok, manageable. I didn't have too much pain until recently, in the last year it's gotten a lot worse. I now have a dx of diffuse PNVS with a very large mass 9cmX6cmX2cm. It's causing a lot of pain but my cartilage isn't damaged yet. I had a needle biopsy to confim the PVNS, Kat-jo, this would be a good option for your daughter. Try a university hospital maybe?
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