HealingWell
Search Close Search
☰

pvns

Support Forums
>
Chronic Pain
✚ New Topic locked
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/3/2008 9:22 PM (GMT 0)
I am new to this site, and I am looking for others who are suffering from PVNS(pigmented villonodular synovitis). It is a disease that effects my knee. I have had 4 surgeries so far with no cure. I grow tumors in the synovium tissuein my knee which causes severe pain an swelling. I have been seeing a pain mgmt. Dr. for 4 yrs and get regular injections. I am also taking Morphine and Roxicodone. I am a homemaker and have 2 kids. I cannot work because if I stand for long periods, my knee swells and I have to have it drained, and it just fills with blood again. I just looking for someone who knows what its like to dell with pain on a daily basis. I know my disease is very rare(1 in 3 million) , but maybe someone out there has heard of it.
Posted 9/3/2008 9:59 PM (GMT 0)
Dear Pvnspain,
I want to welcome you to the HW chronic pain forum, although I'm always sorry that anyone needs to be here, myself included. That being said, it's the most wonderful place for support I've found, and I'm not sure how I'd have survived this long without the great "family" here.

I'm not familiar with your disease, but it certainly does sound painful. And it sounds like the regular swelling and need for aspiration, on top of the rest of the daily pain, is certainly a difficult challenge to deal with - especially with 2 children. I'm sure you've already checked all the options out, but I wondered if a knee replacement could possibly help? Have you been evaluated at a major teaching hospital, perhaps one that deals with this? I'm taking shots in the dark, here, and sometimes I get annoyed with more of the same questions, so feel free to ignore them!

Just know we're here to listen and learn as much as we can. And there may just be another person who's familiar with the specifics of your disease.

Again, welcome!

PaLady
Posted 9/3/2008 11:17 PM (GMT 0)
Thank you for your reply. After I was diagnosed, I was sent to the head Dr. at UCLA med center for Orthopedic Oncology for my last 2 surg. I was told by him that because of my age (32) that I was too young for a knee replacement. I was offered radiation treatment which I declined. I then went to a Dr for the Clippers at USC. I was told by him that there is too much risk to operate on someone my age for a knee replacement. He told me that by the time I was 42, I would need another one which would leave me with 20-30% mobility. I explained to him that right now I have only 50% and that it was a risk I was willing to take. Still said no. So, I am at a point where I was told that I have to live with it. I realize that there are new procedures being done everyday, and one day maybe there will be an advancement that would be able to help me. I guess I am just tired of being told theres nothing we can do. Nobody wants to take the risk. Meanwhile I am in pain everyday and just getting by. I am glad that I found this forum. At least I know that there are people out there that are going through the same things. Sometimes I feel very alone and reading some of the postings I now know that I am not. Thank you again.
Posted 9/3/2008 11:53 PM (GMT 0)
Alone you're not! And you're right that they're always developing new things - especially with knee replacements. I know they've made advances even over the past few years. But that doesn't help you now. I know you will at least find a lot of kindred spirits here.

PaLady
Posted 9/4/2008 12:06 AM (GMT 0)
pvnspain,
I'm glad you're here but also sorry that you need to be here.
You are on the right trail to finding out what the trouble is. I have
no answers for you, but just keep knocking until you find someone
who has your problem.And maybe knows where
es it's not even about my illnesses.
Sometimes we kinda have fun here too.
You are so young. Yes, there is research being done. Research that
will help you and many others.
I'm wondering if i will benefit from this. I'm, ahem,
a little older than you.
Pamela Neckpainhttps://www.healingwell.com/community/emoticons/smile.gif
Posted 9/4/2008 4:18 PM (GMT 0)
Hi PVNSpain,

I am familiar with your diagnosis from a professional standpoint but not from a personal one - so I can understand what is going on with my "head" (textbook-wise for example) but not with my heart. Which is why I believe that forums like this is vital - so individuals can get support for what is really happening day-to-day rather than what the experts and the textbooks say to expect.

With my own chronic pain situation I have learned that the textbooks seldom have a clue about the reality of the pain and how to live with it.

What I do know from the textbooks supports what you described - a rare chronic, painful, recurring situation with surgical intervention as needed - and careful observation / follow-up of the disorder. I hope that you have some very compassionate physicians and surgeons who are willing to treat the pain as much as possible and that they can offer guidance for the ongoing monitoring of the growth.

Radiation treatment may be an option for you in the future if they continue to deny you a knee replacement - I am always surprised when I read that they are reluctant to offer these to younger people; It seems that there are times when the risk / benefit ratio is in favor of this surgery even (and sometimes I think it needs to be "especially") in younger people who have a healthier body over all, thus can withstand and recover from the surgery better / faster and may even show that the prothesis will have a longer life. I am wondering if there are any clinical trials going on that you may qualify for. Maybe if you investigate the websites of the manufacturers - or the NIH - you can see what clinical trials are going on. This could give you an idea of some of your options.
Posted 1/30/2009 11:39 PM (GMT 0)
Aloha, PVNSpain,
In case you do check back in, I have pvns, too. Mine is in the left ankle. Fortunately for me, I have little pain since I can't walk, and so, no weight on the ankle. I do take an occasional Tylenol if it aches or I don't have the foot elevated, but since the first few days after surgery, I stopped taking the Percoset (it made me dizzy and nauseous so I only took it to sleep). I stopped the Mobic since I found out the pain was not caused by arthritis, so other than joint compound (MSM, chondroitin, & glucosamine), calcium, and a multi-vitamin with iron, I don't have to take pain meds regularly now. Maybe once physical therapy starts and I can walk again, I'll need more.
Also, unlike you, my kids are grown & I live alone and can set my ;own schedule. I do teach a psychology class on Monday nights, but with wheelchair and crutches, I get around well enough. The roughest thing for me is not being able to drive and having to depend on chore services and transportation by others. Not walking does not interfere with my job or favorite activities (cooking/baking, and reading) but it does isolate me some.
I suspect that our condition is not as rare as once thought; it's just rarely diagnosed properly! I had it for at least 5 years before finally getting a real answer. In the meantime, I was not able to walk for fear the damaged bone would collapse completely. So, I had a ramp built and now navigate in a wheelchair at home with the help of crutches in tight places.
Did you have a full synovectomy? Did the tumors invade the bone? Some people have received relief with radiation, but I don't blame you for not wanting that. I'm glad surgery was the treatment given me. I may need radiation and/or ankle replacement eventually, but I guess I'm hoping I'm one of those for whom surgery got all the tumors and that the problem does not recur. Only time will tell. At least I live in a sunny, beautiful plaqce. I thank God I did not have to stay in Indiana after surgery!
Good luck to you, and know that you are not alone! Incidentally, the latest stats are 1 in 1.8 million. Still quite rare, but there are more of us than thought for years.

anklepvns
Posted 2/28/2009 10:33 AM (GMT 0)
pvns pain, I am 38yrs old, Stay at Home Mum of 3 little boys and have pvns in my right knee. When I read your post I thought "Finally, someone else with the same disease!".I have had radiotherapy injection that eased swelling for a few months but I have had pvns for 6 yrs and and now at the point where walking is prooving extremely painful. Other than an op to remove the lining (which I know does not rid of the disease as it grows back!) I am at a loss of what to do. I am in so much pain but try to get on with life as normal as possible. It is excruciating at times (like now) and affects my moods, mobility and sleep. It would be great to be able to communicate with another Mum affected by this awful problem (that really has no cure). Boy would I just love a knee replacement about now! I never thought a knee replacement would be on my wishlist (ever!) but I know that you know exactly how I feel pvnspain. I am not sure if my email details are available via this site?? I will check this post again to see if you have read my reply.
Posted 3/26/2009 9:32 PM (GMT 0)

I've dealt with ankle pain since about the age of 15 or so. After lots of X-rays which of course was a waist. Years later, I was sent to a doctor that had a crazy idea, MRI. I so wanted to go back and sue the past doctors but that wouldv'e been sueing the navy in the process. I was then diagnossed with PVNS in my ankle, estimated surgery time was 3 Hrs which it actually took 6 Hrs (and that was with 2 surgens) and that was back in 2000. December 08 i had to buy a cane due to a bad snow strom and i pretty much lost the ability to walk on way own since foul and/or cold weather agitates and cause me great pain, my ankle seems very keyed on weather and climate. as years go by it just gets worse and worse, i use to walk with a slight limp but the years of over compinsating (before sergery) and later on the sheer amount of limping i done, not sure how much more i can take. been thinking on disability lately but its also something i really dont want to be on, im only 25 i shouldnt be thinking about such things. on a worse note when i was about 22-23 i was preticting that i would be in a wheelchair by the age of 40, lately ive been thinking it would be sooner than that.

Posted 6/3/2009 6:21 PM (GMT 0)
pvnspain,

i too have been diagnosed with pvns about 3 years ago.  I went over a year before they found out what was wrong with my knee.  After the diagnosis, I had surgery, at 73yrs old, for a knee replacement. A few months later it was back again. Yes, pain plus OWWWW.  I finally had a synovectomy done, at 74 yrs old.  My Dr discovered the pvns tumor had damaged my new knee and had to do another knee replacement.  After the first replacement I was walking all over, with no pain medication only tylenol, after 3 weeks.  After the second replacement I was walking without a walker, driving and even dancing, after 2 weeks.  I only say this because it isn't really that bad after all of the pain I was in with the pvns.  Now, at 75,  the pvns is back again and the Drs. are talking about radiation treatments.  From some of the research I have done, I could lose my leg, without the treatment.  Then again I could lose it with the treatment.

Just remember, knee replacement will not necessarily get rid of the pvns. nono   Mine is very aggressive so I am feeling I have to be seriously thinking about having something done soon.

Post Edited (kneepvns) : 6/3/2009 12:27:39 PM (GMT-6)

Posted 8/1/2009 6:23 AM (GMT 0)
Hi everyone,

My name is Andrea and I too suffer from pvns. I have had 2 foot surgeries since 2005 and now I have to have another one. At first, the doctors told me it was a cyst, this was back in 2003. My first surgery in 2005 came back as a giant cell tumor, boy was I shocked. No one believed me about the pain and swelling. My doctors told me it was all in my head. My second surgery was three months after the first. The doctor said that she could not obtain clean margins. Now the thing is back and is more aggressive, not to mention painful, than ever. I can hardly clean my own house anymore and driving is almost out of the question. I have two young children and it bothers me that I can't play with them very much. My doctor now, I have only seen my twice, has blown me off saying I have arthritis and fibromyalgia. I know I have arthritis but this is definitely different. This last doctor told me that I have pvns but he says there is nothing he can do. So, the docs keep cramping pain pills down my throat, not literally, but thats what it feels like. Now over the last 2+ years I have had severe knee pain and swelling and the doctors won't even do a contrast scan of my knee. I have had enough of the run around and the pain. I would love my old life back, the one where I could run and have fun. I am only 25 and it is really depressing to me when the doctors realize my age and tell me I can't be in this shape. I need to find a good doctor. One that isn't going to judge me by my age but my condition. Hopefully relieve the pain, so I do not have to eat so many pain pills just to make it through the day. I am really relieved that I have found people I can talk to about this disease. The last doctor I saw before this useless one, told me the tumor is in the joint space and is wrapped around another tendon, I have already lost one due to this thing. Does anyone know how that surgery goes? Thanks and Best Wishes. Oh! Does anyone know a good doctor that is around OK or the surrounding states?
Posted 8/1/2009 2:25 PM (GMT 0)
Andy09 I would like to Welcome you to our family here on HealingWell forums.  I'm so sorry about your pain and sweling.  People will be along throughout the weekend and will help with support and advice.  We are all not doctors but we have hearts as big as Texas.

I would like to welcome you to start your own thread and introduce yourself to us.  You will get alot more responses to your questions...

Hope you stay with us.  And I will look forward to reading a thread on you.. yeah

Laurie

Posted 11/3/2009 4:52 AM (GMT 0)
Hello, I am new to this forum as well, but I happen to know alot about this disease because I have been sufering with it for 5 years. I have the diffuse pvns and have had 2 surgeries, 3 knee manipulations and just finished undergoing radiation treatment 2 months ago. Apparently since the radiation treatment my last MRI looked good int he front of my leg but unfortunately the cells are in the back. My doctor that I have now is amazing. People fly in to him from around the country. He even thinks that the radiation will shrink some of the cells in the back off my knee. Im not going to tell you that I am not in pain anymore because I constantly still am and unfortunately I cant bend my knee past 95 degrees and because of the last 2 open synevectomy sugery and built up scar tissue and the long 4 month recovery time I will not be able to ever bend it much further. Dr Gibbs in Gainesville, FL at Shands has seen many cases of this even with it being so rare. I use to do the shots and aspirations to my knee regularly but to be honest it will not help you but for a few weeks or days and you are really not supposed to get a lot of cortizone and aspirating the knee over and over can cause damage. Did you have open synevectomy's or arthriscopic surgeries? I went through radiation treatment after my last synevectomy for 1 month twice a day and it is gone in the front of my knee so far. I have another MRI scheduled ffor December to see what is left in the back of my knee. Radiation works for many months after treatment ends so hopefully it will go away in the back of my knee too. If you have any other questions or just want to talk just let me know. I dont do anything anymore because I lost my job due to this amd am on long term disability until I find out what is next in December. I do still go to physical therapy 3 times a week because I am on a cane just because of no quad strength due to the cuts and recurrence of the disease before. I hope this helps you. You really need to see agood specialist because most doctors have not really dealt with this much. I also know that the Mayo clinic in Minnesota has great doctors there that people with our condition they have seen multiple times. I am currently in a study for the recent radaiation. Maybe this will be the answer or us all who have it to get better and live a pain free life.
Posted 11/3/2009 5:19 AM (GMT 0)
Sorry forgot to write with PVNS

To ANYONE WHO IS LOOKING FOR A VERY QUALIFIED ORTHOPAEDIC ONCOLOGIST WITH PVNS:

DR. Gibbs and Dr. Scarbarough at Shands in Gainesville, Florida. When you fly in you can stay at the Hilton and ask for the Shands rate. You will literally be across from their office. They do MRI's at their facility on the first floor and Dr. Gibbs can read it within 1 hour. He has had done so many surgeries and helped so many people, unortuanatley mine has been very aggressive recurrence but he has had many success stories. He may thenn send you after surgery (once you have healed a liitle) to Dr. Zlotecki, who is radiation oncology. He is amazing as well and will probably put you in his study too. When you are going for radiation you can stay at the Hope Lodge. It is a cancer lodge. You do not have to pay anything. You have to take a tour and there is transportation to the radiation as well. You will have your own room and 2 beds for you and a caretaker to help you. The radiation doesnt hurt at all. You may swell up and your knee will look burnt by the end of treatment, but you will be ok just drained from all the appointments. I hope this helps alot of people. I have his number but you can google it. He doesnt even mention amputation because there are so many other avenues to take first. My first doctor mentioned amputation and I got rid of him. Now I truly have the BEST
Posted 11/14/2009 6:48 PM (GMT 0)
Hi jill. I also have pvns.Diagnoised last sept 2009.Started cortison injections last month. Has not helped the swelling. but pain has been minamal.I won't go into a long story. You can read my thread to learn more about my story.Just wanted to say HI and welcome. Hope to see you post again soon.Have not had a lot o f free time  .my hubby is recuperating from a broken ankle.. He is using a wheel chair to get around.Its good to see i am not alone with this pvns.
Posted 12/13/2009 6:43 AM (GMT 0)
Hello. I am a 22 year old male who has been through the whole world with orthopedic problems like alot of you have. I have had a total of 19 surgies on both my left hip and knee dating back to when I was 7. I was diagnosed with Neurofibromatosis when i was 10. Recently I was also diagnosed with pvns as well that has affected mainly my hip. I know exactly what everyone has gone through with pain as I have seen alot thrown my way. I am opened to more surgery to remove the tumor, as well as radiation. Yes radiation seems bad, but I figure why not take effort not instead of dragging life on even worse for my whole life. This is also an answer to all the pain pills. I am also a full time college student and I do part time computer work to pay the bills. I understand I cant walk much, or physcially do much. But I figure if I can sit here and write an email on my couch I can also enter data for a job and read books for school. I do appreciate all of the posts and experiences on this site. It is nice to hear someone else's point of view on the same condition. good luck guys!
Posted 2/20/2010 10:50 PM (GMT 0)
Hello, I have PVNS and have posted many times before. I have gone for another MRI 5 months after my radiation treatments and the cells in the front of my knee were gone and the cells on the back look like they are shrinking. I was so excited to hear the news until recently my knee startyed swelling in the front again. For all of you that know and have had these symptoms again it usually means PVNS is back. I hope it is not but being I have been going through this for several years I think it is. That is always what is has meant before when my knee swwells and the pain increases even more than what I currently live with. At physical therapy They did e-stim and lots of ice again because it was too swollen to do quad or bending exerciises. I am so tired of this disease and was considering a total knee because I dont know what else to do. I still cant bend my knee since the last surgery in May more than 102 degrees and doctor said I may never being I have had 2 open synevectomy surgeries, 3 knee manipulations and radiation. I still limp and cannot stand for a period of time. I have a great doctor but he says I am not a canddidate for total knee but I think I need it. Im  really tired of this disease and getting severly depressed again. I want my life back. I want to be able to walk and have a job again. I am tired of doctors. I am 32 and really tired of this debilitating my life. Please someone give me some hope Im really depressed again and back on morphine to relieve the horrible constant pain.
Posted 3/7/2010 4:53 PM (GMT 0)
Hi Jill777 , I am new to this forum and new to PVNS however when I say new I mean newly diagnosed. I`ve had over 20 years of pain, swelling , knee locking and instability and it was only after my 7th arthroscopy in Deceber 2009 that the condition was diagnosed. My knee is now so bad I can`t walk unaided and even sitting my knee swells alarmingly. It`s got to the point where it`s now swollen badly when I first get out of bed , a bed I can no longer share with my wife as I sleep alone in an effort to immobilise my knee and prevent rolling over in the night wich just aggravates it and wakes me which means another sleepless night. This horrible condition has had a terrible effect on our family life and I hope that my next surgery will be a total knee replacement as anything will be better than the life I have at the moment. I am only 42 years old but if having a new knee means giving me back some quality of life with my young daughter then thats what I`m going to push for and I hope my surgeon agree with me. I go back to see him for my next appointment in 5 weeks. I listened to Dr`s and surgeons and physiotherapists tell me for years that they could find no major fault and that to all intents and purposes my knee looked fit and healthy , that said they still couldn`t understand the swelling and instability and why I was having all the problems I was. If this sounds familiar to anyone reading this forum yet to be diagnosed wit this awful disease then please mention PVNS to your Dr , it`s not a common condition and can easily be mistaken for something else. I hope and pray that you find the help you need soon and can start to live a normal life again  
Posted 3/13/2010 6:48 AM (GMT 0)
I just found this site and want to introduce myself. My PVNS is in my right knee. Since my original diagnosis of a Baker's cyst in 2000, I have had a frontal arthroscopic and open synovectomy and three open posterior ones. The last posterior was extensive and had the complication of a seroma forming. This was a large draining void which took six months to close and required a wound vac to aid the healing. This was in 2005. Three years ago an MRI showed two posterior lesions outside the joint. I am a 58 yo male and the orthopedic oncologist said my next surgery would be a knee replacement because scar tissue prohibited posterior surgery. I haven't been back since. The most likely trigger for me to seek more treatment will be deficits in circulation or motor control due to pressure on the vessels or nerves in the vicinity of the tumors.
Posted 8/24/2010 11:46 PM (GMT 0)
I recently was diagnosed with PVNS after 20+ years of swelling. I never really had any pain. I have not had pain yet even after a recent synovectomy. I am on crutches and will be off of them shortly after being on them for 3 months.  I have been told by my physician that he removed all of the bad stuff (i.e. fronds of synovium, the section that began invading my cartlidge etc...) and if I am very good for 3 months then pretty good for another 3 months I could go decades without issues.  By good I mean not walking on my leg and pretty good by not doing anything crazy when I do walk. 

 I went to 3 different orthopedic doctors with no one determining what the problem was. My husband broke his heel which brought us to a doctor near Boston for a full heel rebuild/repair.  Had this not happened I would have never asked the question if he worked on knees during a visit for my husbands follow up appointments.  God works in mysterious ways.  Within 5 minutes of explaining my symptoms this doctor offered PVNS as a possible explanation. MRI followed with him saying geez, your knee is a mess.   At this moment he does not want me to have radiation but who knows what my future holds. 

 I am curious if there is any studies out there to determine why this happens.  I cannot find anything that can explain this rare disease.  Perhaps I am still in the infancy stage of "why me" but would like to figure this out. I have always been athletic and wonder what the future holds.  Good luck to all of you who share this with me.  

Posted 2/5/2012 9:44 AM (GMT 0)
Hi all, (first time member), 34yrs, mother of 2yr old.

July 2011 - pain in Left knee from sports game - thought i injured it from sports but it actually helped me to diagnose the problem.
Aug 2011 - diagnosed with PVNS. was referred to best knee doc who knows a lot about this disease.
9th Jan 2012 - Had surgery - full cut in the front and 'lump' removed.
5th Feb 2012 - meds finished & starting to feel discomfort and i think i need my crutches back?!

(wk3) Did some little exercises - lying on back and lifting knee (bent at 45deg) towards my head, did about 10x and started hurting at no.8 at the knee cap. Scar tissue hurting most times and then i have the odd pinching feeling at the scar. last week knee starting to feel pain when i get up from chair and can only walk a few steps (must be because no more meds or the exercises) have been taking it easy because i can't do anything not even walking more than 20m without it starting to hurt. Off my knee it feels warm and i think the swelling is still there, can't tell. when i don't think about it i walk normally until i think about it or someone mentions how good im walking and then i stop walking normal....was thinking it could be psychological?
Trying not to be depressed but when i tried looking for info on recovery time all i found were posts about multiple surgeries, reacurring problems.
Doc gave me a 90% chance of it not coming back - that gave me positive hope.
I've read that yoga is good and i used to do Bikram yoga before surgery and it was great for my whole body, i want to go back but will i be able to be as good as i was even when i had the PVNS, from the time i was diagnosed to the time i had surgery, my ankle was starting to hurt and i think it was due to the PVNS but then i went to Bikram and the pain everywhere was gone, once i stopped the B.Y the pain only came back in my knee but not the ankle.

Has anyone recovered from this, fully or near fully? will i be able to run again? what kind of rehab is there? At Post-Op follow up, Doc said go back to normal day living and when i'm ready to run i can, but start off easy etc...
Has anyone has gone back to an active life? i don't want this disease to control my life! i want to beat it! i've signed up for a triathlon in April with 3x friends and its my first and i really want to complete it - am i just kidding myself?

eager to hear any replies. thanks
Posted 2/5/2012 1:14 PM (GMT 0)
 

      Good morning Handy!

           I'm going to start a new thread for you, since you will get a much greater exposure this way. The post you replied to here is very out dated, and was started way back in 2008. I will copy your thread here, and then lock this thread, as it seems best to take care of these old post this way. Many of the members that you are addressing here are no longer active members, and you would be better off, reaching out to current members who may suffer this same health issue.

    Thanks!

       SE

✚ New Topic locked