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Diffuse Type PVNS/TGCT

Posted , 3 users are following.

Shaq64
Shaq64

Good day,

l was recently diagnosed with R knee PVNS - Diffuse type.

The condition started when l was 9 years old (2003). My R knee swell up from the blues, excruciating pain in the mornings and it was very stiff. l still feel all that. My concerned parents took me for Xrays, tests and numerous consultations but all tests were inconclusive. l lived and still live with the pain to date but never gave up on finding a solution. l finally had an MRI done 18 Dec 2017 and the received the diagnosis of Diffuse PVNS on 23 Jan 2018 - whats a way to start 2018 right sad. l had no biopsy to confirm the condition but my hospital Dr is certain.

The treatment ONLY option l was given was an open surgery which l read on and found not to a guaranteed solution. 50% of the tumor growing again is a nightmare.

l hereby come to you trying to relate and understand how you are managing pre and post op. As in the subject, my condition is diffuse type - the monster of them all.

A brief story of mine goes: my R knee has been swollen since when l was 9. l was restricted from taking part in sports, doing straneous activities. Basically l could not play outside or at school like any other "black african kid". Growing up; l devised a way to walk to keep people away from asking why l was limping, l stopped n do not wear shorts and skinny pants - my tumor just loves to show off itself so l hide it the best way l can. l will rather be late than run to make it on time because in many cases back @ school l'd run, my knee would give in, l'd fall and find myself in pain an adolescent and teenager doesn't deserve. Right now, l just tolerate the pain, l do not take regular or daily treatment for this. If the pain gets worse like today, which usually happens when it gets cold or after rains, l get msyelf a cortisone shot, within an hr or so, l will be back to the pain l know and tolerate. 

FYI - l am a black male. Living with this condition is very tough in this part of the world because people in my community do no understand such things like this "rare diseases".And as much as they do not know, no one wants to learn about them ... even doctors!!! l am based in South Africa/Pretoria, our medical care is beyond poor am sure if you follow health stastics - stupid treatable disease are lethal/fatal on this part of the planet. With that said, imagine bringing PVNS to a surgeons consulting room ... l don't even want to imagine his/her reaction to it.

Back to PVNS - lol, my fingers are literally trembling as l type along. 

- l bet most of you are in the 1st worlds. What were the treatment options you were given upon making the diagnosis? And what were your choices?

- With a number of PVNS/TGCT Clinical trials being conducted in the 1st worlds, did y'all consider taking part, if yes what was the outcome, if no which Rx method did you declare to be better and why?

- For those who chose to go for surgery, how are you doing 2 weeks, a month, 3 months, 6 months, a year and 2 years post op? Any reoccurances yet, if yeah, whats the way forward?

- For those who are recovering, what has your journey been like from day 1 post op? am talking pain, immobility, exercise, swelling, surgery complications etc? Shout out to @Paul, @O'conor and @Oldfatguy (l am sorry to use the nickname - l couldnt find his name on any of the posts l went through) for sharing your stories, they touched me so deeply.

- To the diffuse PVNS sufferers particularly, they are those like @Tinisha if l am not mistkaken, whose tumor is close to the nerves, what have you decided to do as a way forward. l wasnt told of the level of damage of my knee but its approx 2-3 times the size of my left knee. If l am standing straight up looking from quads, all the way down to my knee all looks even jus like one long block of meat. The lower part of the limb from the apex of the tibia down looks very normal but funny at the same time because my entired R leg looks the "Finger of God" (https://www.gondwana-collection.com/blog/finger-of-god/). l do not know if my bones are damges, l don't know if the nervous system is damaged too. l sometimes experience pins and needles under my right foot (rare ocassions), sometimes the knee itself gets so itchy and hot. Lord... l do not know why l had to have this.

- l am very scared of going for an Op especially here in Africa. l again cannot ask my attending Dr how many cases of mine he has dealt with but if stats say 1.8 people in a million, l could be his only PVNS patient his whole carrier. Not many Drs, will openly tell you that you are their 1st case and most of them wouldn't want to confess their fears to you. The biggest problem is l am a government patient, l can't sue the Dr if he messes me up. l am allowed to sue the hospital but because its a government owned hospital, its pointless, they can't inconvinience the hospital because of one person - so they say. l am basically walking myself into a dark forest with thorns, bear traps, hungry jaguars and all the worst things one can imagine. My only hope is that the forest is a square kilometer smilesmilesmile unbelievable.

- As rare as PVNS is, l was hoping that pharmaceutical and sponsor companies would go all out to harness people like us (well l mean the willing type like me), study this condition, spend/invest and reach ground-breaking heights before it booms and becomes common like Arthiritis. l am more than willing to participate in any phase from I to IV of a clinical trial but my problem is the geographic location l am in. l hope a someone reads this and have a sponsor/pharmaceutical company reach out to me.

l have said a lot, didn't l? l believe we will conquer this, if not - this portal should serve generations to come to help understand PVNS/TGCT better. And thanks to the people who keep this portal alive and going!!!

Your replies are much appreciated, will stay and hold onto this portal for dear-life.

Shaqueal

1 like, 4 replies

4 Replies

  • ashley_49882
    ashley_49882 Shaq64

    Posted

    I’m so sorry to hear about you diagnosis. I was diagnosed with PVNS diffused in 2013 and had my first surgery (arthroscopic 3 pin holes) on October 31. My second surgery which was open knee was 3 months later on February 3rd 2016 for the open surgery to remove the tumor out of the back of my knee along with my bakers cyst. Now, the open surgery comes with more complications and risks. For instance, you’re more succeptible to blood clots and nerve damage. I had some slight nerve damage but nothing that has hindered me from any activities. I started having pains late 2015 again and discovered the tumor was back. Doctor went in arthroscopic 4 holes this time on March 10 2016.  He said this is my last surgery due to wear and tear on my cartilage. I’m now 20 and it’s been almost 2 years since my last surgery. The past 2 years and the 2 years before the reoccurring tumor was great. Nearly no pain with the exception of rain and the occasional stiffness or catching. But nothing like having the tumor. Now, as of today, I have been experiencing some pains in my knee and radiating down to foot like the tumor is reoccurring again! A suggestion my doctor made was radiation if it occurs again (I haven’t been back to doctor since 2016). So, that’s where I’m at and the surgery definitely helps a bunch.

     Recovery: i recovered quite quickly with all of my surgeries and was able to walk without crutches within a week with the first and third. The open knee surgery took a little longer to walk but I regained full mobility within 3 months tops. The arthroscopic surgeries took less than that and I was snow tubing and walking up the hill by not even 2 months later. Bend, bend, bend and bend it some more after surgery! DO NOT FAVOR IT OR BABY IT! But do know your limits. It will feel TIGHT like your knee will break in half of you bend it but it won’t. It’s just stiff from surgery and fluid. Just maintain your flexibility in it or you won’t regain the full use and function of your knee. To this day I can climb stairs 2 or 3 steps at a time with no problem or pain using either leg to lead and pull up. I have noticed sitting criss crossed with my legs HURTS over time but not immediately. 

    I hope this helps and if you have anymore questions that I didn’t answer I’ll try to respond as soon as possible. I know it’s scary but you can recover from this. 

  • Shaq64
    Shaq64

    Posted

    Dear Ashley,

    What an ordeal you went through. Its so sad that you are only 20 and you have gone through so many surgeries. l am hoping that you will be free from this going on. l have decided to holdon to my PVNS for now. Skittish for the surgery, l cannot do it now. Am still seeking second opinion, would like to know how much damage it has caused on my knee. If l can still go for a year or two, then l will take the chance while l complete my studies. l will definitely keep in touch and let you know what progress l have made.

    Coming back to your story, the Dr mentioned that a there was cartilage damage caused by one of the Ops, that may lead to athritis in the coming years, wont it? What did he do about it?

    Secondly, you mentioned some nervous damage. l do not know the level of damage you have but response wise, is you knee fully responding to stimuli? Was the damage caused by the Op or by the tumor? l am glad that the damage did not render your leg useless at the end of the day. l read somewhere where they ended up amputating the leg because the damage had been overboard. 

    Please keep me in the loop. l would like to know how you are copying and how you are progressing. We are in the same age group, you were brave enough to go on with the surgery. l would like to know if it will be safer forme to taste the waters too.

    KR

    Shaqueal

  • ashley_49882
    ashley_49882 Shaq64

    Posted

    I’m sorry for taking so long to respond. I had sent a reply back, but somehow it didn’t go through. I did mention cartilage damage but mainly from having PVNS, because our knees swell and build up fluid. The fluid washes away the cartilage like sand on a beach when waves wash it away. The surgery might cause cartilage damage but only slight. If PVNS grows on your cartilage then they’ll scrape it off. If not they’ll leave your cartilage alone. My knee is normal. Everything is great! The only nerve damage I have is on the surface of my skin where they did the incision. This was the second surgery (open knee on the back side 8 inches long and shaped like a snake). But, it’s very minimal nerve damage, because other than the feeling around the scar itself, I can feel my leg and knee just fine! 

    Hope this helps! Sorry for taking so long! 

  • Ltrop
    Ltrop Shaq64

    Posted

    I’m sorry to hear about your diagnosis. I had PVNS in my right knee. 5 years ago (at the age of 13), I noticed popping in my knee. Literally, almost every step my knee popped out and back in place when I straightened it. Sometimes it would lock up for a while and sometimes it wouldn’t straighten. I went to 3 different doctors.... none of them had answers. I was sent to physical therapy 2 times and it never helped. 4 years later, I went to another doctor because the continual swelling and popping was worsening. This doctor knew something was wrong but he didn’t know what it was. After 2 MRI’s, my case was still a mystery. Everyone knew something was wrong, but the test results always came up fine.  A doctor at one of the best universities finally told me I need surgery to see what is wrong. 

    I was so scared. Nobody knew what it was. Why would they operate on someone who’s results came back fine??! 

    But... I went along with the surgery. When I woke up, the doctor told me his findings. A gym ball sized tumor in my knee joint. PVNS. the recovery was great for me. 

    After surgery, I walked partially with crutches for about three days. Then I started physical therapy. Strengthening your leg muscle and increasing mobility is vital to your recovery. Start quick.

    Here I am: 9 months after surgery. I have no symptoms of PVNS. I am playing the waiting game, but if it does come back, I won’t be terrified. It can be treated and my only regret was not getting the treatment sooner. 

    Good luck. Please let me know if you have any questions. 

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