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anklepvns
New Member


Date Joined Jan 2009
Total Posts : 9
   Posted 1/29/2009 10:20 PM (GMT -7)   
I recently had surgery for PVNS in my left ankle. I saw one post from someone with this condition in her knee; now there at least 2 of us here with this chronic problem. I hope I have a better prognosis than pvnspain but I know recurrence of the lesions is normal. It took years to get a viable diagnosis...it usually occurs in other joints (knees or hips) in younger people. I suspect it is a lot more common than what is reported as it is so often misdiagnosed (my ankle was first suspected to have a fracture {not} then arthritis with bone spurs {partly true but Celebrex didn't help much, so more was indicated}, then osteochondritis was considered, sarcoma, infections, and even gout. I am old enough to have ankle replacement but the doctor preferred less drastic treatment. He performed arthroscopic surgery, a synovectomy, with bone grafts and pins inserted to stabilize the ankle. I certainly hope I'll be walking again soon! Wish me luck.

ankle pvns

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/29/2009 10:51 PM (GMT -7)   
Hi, ankle,
I wanted to welcome you to the chronic pain forum of HW. Unfortunately, I'm not familiar with your condition. If you feel up to it, could you explain what PVNS is?

You can also search Healing Well and see if you can find that other person. I'm not sure who it is. This is a great place for support, but you may need to tell others who are ignorant like me a bit more about what you're going through.

And I do wish you luck!

PaLady

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 1/30/2009 12:00 AM (GMT -7)   
Hi ankle and welcome to our CP family!

I am sorry this rare disorder is causing you such misery. Hopefully the other person who posted about it will return and you can get together. In the mean time the rest of us are happy to offer any support we can.

Like PaLady, I had no idea what this was so I looked it up. I'm sure your description will be much better but below is a link to the site and a small bit on what PVNS is.

Keep us posted on your progress!
Chutzie


http://familydoctor.org/online/famdocen/home/common/pain/disorders/469.html

Pigmented villonodular synovitis (PVNS) is a joint problem that usually affects the hip or knee. It can also occur in the shoulder, ankle, elbow, hand or foot.

When you have PVNS, the lining of a joint becomes swollen and grows. This growth harms the bone around the joint. The lining also makes extra fluid that can cause swelling and make movement very painful.
Co-Moderator Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
***************
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anklepvns
New Member


Date Joined Jan 2009
Total Posts : 9
   Posted 1/30/2009 8:36 AM (GMT -7)   
Aloha, Chutz & PAlady,
Thanks for your kind responses. Like both of you, I had never heard of PVNS when this diagnosis was first suggested as a possibility, and no other doctor in my area had heard of it. Even the orthopedic ankle specialist who first broached the tentative diagnosis was not sure, referring me to another, more experienced orthopedic specialist who then said it was NOT PVNS. That's why endless tests were run: it is difficult to diagnose. When the first pathologist viewed the biopsy , she saw "large flat cells" but apparently, they were not pigmented, so she ruled out PVNS. Finally, 2 doctors in Indianapolis, concurred that it was, explaining that the cells were often unusual, not all alike.
I found an excellent article in the June 2008 Journal of the American Academy of Orthopedic Surgeons (Vol. 14, #6, pp.376-385) by Drs. W. Tyler, A. Vidal, R. Williams, & J. Healy) that gave detailed explanations and pictures of the pigmented cells.
I told my doctors that they ought to pay ME for the increased knowledge they gained from having me as a patient.
For any of you out there with swelling, pain, and weqkness in your knee, shoulder, ankle or other joint that neither arthritis or cancer or infection accounts for, an MRI can help narrow the possibility (even biopsies are not definitive; they may simply rule out cancer). I'll keep you informed of how well the treatment I received works. I will see local specialists for follow-up, but if the lesions recur as they often do (in about 50% of the time), I may have to return to Indiana for further surgery.

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 1/30/2009 11:43 AM (GMT -7)   
Thanks for the info. I hope your current treatment does some good for you and that you don't need further surgery. I will keep good thoughts out for you.

God bless

Lindaloo
Moderator Chronic Pain
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/30/2009 3:19 PM (GMT -7)   
Yes, ankle, thanks for explaining. Wow - most of us go through huge challenges getting a diagnosis, but when you have to get down to the cellular level to be accurate...must be beyond frustrating for you. I agree, you should get free treatment (I'm not kidding here!) if you're being used at all for research purposes.

Please feel free to jump in with us on any thread if you're looking for some support.

PaLady

anklepvns
New Member


Date Joined Jan 2009
Total Posts : 9
   Posted 1/30/2009 4:51 PM (GMT -7)   
Aloha, PAlady and Lindaloo,
Being a guinea pig is interesting, all right, but I do hope my experience helps others get a quicker diagnosis. The sooner mor MDs are aware of this condition, the better their diagnostic skills are bound to be. At least it's not terminal, just chronic! Once I get a car with automatic transmission and room for my wheelchair, I'll be able to be more independent. I'm strong enough to put the wheelchair in the back so could be on my own. I guess I was hoping for a complete cure so I could keep my cute little sports car. Ah, well, mobility wins out over youth and vanity I guess.
Thanks for the support,
anklepvns

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/30/2009 5:13 PM (GMT -7)   
Mobility sure does win out, although not always easily on an emotional level. Hey, we have some virtual sports car rides going on in one of these threads. We get a little wacky now and then, but if you want to join in, feel free!

By the way, you're not in Hawaii are you? Because if you are I want to know if you have an extra room!!! smilewinkgrin

PaLady

anklepvns
New Member


Date Joined Jan 2009
Total Posts : 9
   Posted 1/30/2009 5:45 PM (GMT -7)   
Aloha, PAlady,
Yes, I DO live in Hawaii and I do have an extra room. I have an informal B&B and LOVE being a hostess!
Yes, I read the Corvette ride you guys took, but my little Miata would have left you in the dust...if I could have had someone drive me!
Headed outside to lounge on the deck and read now,
yeah yeah yeah
anklepvns

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/30/2009 6:11 PM (GMT -7)   
I'm packing. Will be on the first flight as soon as I can get the money to pay for it!! smilewinkgrin
And I can do the driving around the island! yeah

I was there once in 1979. LOVED it. And I have a young cousin who just got married and is living on an army base somewhere there.

PaLady---------> Hawaii bound cool

anklepvns
New Member


Date Joined Jan 2009
Total Posts : 9
   Posted 1/30/2009 8:28 PM (GMT -7)   
There have to be SOME compensations for old age and health problems, don't there? Just spent an hour watching the finches work the blooms on my umbrella tree while sipping ice water and lounging on the chaise on my lanai (deck) in 75 degree weather, gazing in the distance at the dunes of Moomomi Beach....I can live with PVNS if I can have my beautiful lifestyle here. I'm a sunshine freak. I think if I had to put up with bare trees, ice and snow and zero degree weather for4 months a year, this ankle problem would result in depressive symptoms. As it is, if I have an occasional "poor me" moment, all I have to do to get back on track is to look out the window, watch the palm tree sway in the breeze in my front yard (my computer is set up by this window) as the doves and cardinals strut across my lawn or sit on my lanai and see the ocean or the bees sip nectar from the blooms on my avocado trees, and all is right with the world for me.

I think one of the reasons I can deal with pain so well is because I don't have a stressful lifestyle.

Life is good.

Got your plane tickets yet?

anklepvns

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/30/2009 8:55 PM (GMT -7)   
Oh, rub it in while I'm looking out my window at a gazillion inches of snow and a frozen Great Lake. smilewinkgrin

PaLady--------> saving pennies for tickets to Hawaii cool

anklepvns
New Member


Date Joined Jan 2009
Total Posts : 9
   Posted 1/30/2009 10:01 PM (GMT -7)   
I worked hard to get here, sold almost everything (except my art collection and my Miata), got a job, and I got a lucky deal on my house...I couldn't afford to buy a house here now. And the agency I worked for before retiring lost all its funding so I wouldn't be able to get a job if looking now. Besides, I paid my dues; I spent almost 2 months in the cold midwest and Vermont with my daughter, attending my father's funeral, consoling my daughter whose husband just left her, then having surgery and being housebound with a cast for 2 1/2 weeks. Try maneuvering icy gravel on crutches in 15 below 0 weather (I suspect that you have), and realize you CHOSE to stay in abominable snowman climes!

Anyway, I'll put you up if you get here!

pvnsvet
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/31/2009 4:40 PM (GMT -7)   
Hi Ankle---
You're not alone, and PVNS is not as uncommon as you might think, even if many docs are not up on it.
I had my first surgery for pvns in my ankle 13 years ago---and about 10 more surgeries since then. But I've been kind of unlucky, along the way; I'm sure you'll do better than me.
Above all, make sure you see a doctor who is familiar with PVNS. That might be an orthopedic oncologist. But, for you, and ankle expert would be good too--it's just hard to find an ankle expert who is familiar with pvns.
If the doctor is familiar with pvns, he is more likely to be agressive in trying to get all of it, during surgery. For me, this was not true for the first several surgeries--which meant it always returned within 6-12 months. If it does return multiple times, some doctors might suggest radiation. This is what it took ultimately to get rid of mine, but at some cost of possibly further damaging bones, tendons and nerves. Proceed carefully.
You also mentioned ankle replacement at some point--I had this done, by a doctor in Evanston/Glenview IL; ultimately didn't work for me and needed to be removed, but it is being improved all the time. Again, proceed carefully.
Good luck,
PVNS-Vet

anklepvns
New Member


Date Joined Jan 2009
Total Posts : 9
   Posted 1/31/2009 5:21 PM (GMT -7)   
Aloha, PVNSvet,
Thanks for the info; I got my surgery in Indiana with an orthopedic ankle specialist who quickly diagnosed it correctly. Since initial biopsies revealed "large, flat cells," but ones without the characteristic pigmentation, my Hawaii ankle specialist consulted with an orthopedic oncologist who was also unsure of the diagnosis. I had to go to Indianapolis to get the treatment as it is a much larger clinic with more experience with PVNS. Only one other person in HI has been diagnosed with ankle PVNS, apparently, so I didn't want to take a chance on having it treated here in HI. I will get routine follow-up care here, and now that he knows for sure that my situation IS, in fact, caused by PVNS, he will know what to look for in subsequent MRIs. I've suspected for a long time that this condition is much more common than known as it is so often misdiagnosed (i.e., I had 3 so-called expert & skilled orthopedic surgeons be CERTAIN that it was something else); one pompous doc chewed out his tech who did the bone scan, talked as if I were not there, and arrogantly dismissed the PVNS dx and confidently proclaimed my problem to be "osteochondritis dissecans." I interrupted him to introduce myself, using my legitimate title of "doctor" (I'm a psychologist) and vowed never to return to him for any kind of services!
What my surgeon did was to use my own healthy bone (from my heel) to graft into the holes where he had cleaned out the lesions, then to put pins in the largest one to stabilize the bone. I hadn't read of this being done by others. I hope it does give me a better prognosis than you and many others I've read about have experienced.
I did make sure my surgeon cleaned out all the tumors...he said he did, but I know that may be wishful thinking on his part. I hope I don't need radiation, but I won't balk if that is the only way they can get rid of all the tumors. I have been such an active person all my life that this curr3n wheelchair-bound status is getting a bit old. Hoping and praying that I would be able to wal again is wqaht helped keep my spirits up. But, I'm neither stupid nor naive, and I will deal with whatever happens with as much equanimity as possible.
Sounds like radiation worked for you, so I will remember that as my future unfolds.
Thanks so much for your kind words (or, as we say here, "Mahalo nui loa"),
Anklepvns

lorac
New Member


Date Joined Feb 2009
Total Posts : 1
   Posted 2/28/2009 12:10 PM (GMT -7)   
pvnsvet.....I see you are San Francisco! I currently have PVNS in my ankle.....the podiatric surgeon I was referred to has only done 12 surgerys on PVNS. where did you do your surgery?

anklepvns
New Member


Date Joined Jan 2009
Total Posts : 9
   Posted 2/28/2009 3:07 PM (GMT -7)   
Aloha, lorac,
Welcome to the ankle PVNS club! Hope your surgery went well. I am finally walking again after almost 5 months with almost no weight put on my ankle. I was told on 2/20 that I could now walk, that the surgery had strengthened my ankle enough (pins and bone grafts were helpful) to do so. Had a lot of swelling and pain at first, but with physical therapy, I've been able to reduce the swelling and increase the flexibility so that I am slowly getting back on my feet! Feels great. Hope you are able to get the desired results. Actually, "only 12" is a high number, since there are so few of us with this problem (for ankle PVNS, less than 1 in 2 million).
Good luck,
anklepvns in HI

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 10/9/2009 5:49 PM (GMT -7)   
bumping up for peglady - it is a post from earlier in the year, though, and some of the members may not be actively posting any longer.

PaLady

Post Edited (PAlady) : 10/9/2009 6:54:43 PM (GMT-6)


bumknee
New Member


Date Joined Jan 2013
Total Posts : 1
   Posted 1/31/2013 7:59 PM (GMT -7)   
Hi Gang,
I just got off the phone with my doctor and I am apparently a new inductee into the PVNS club. My MRI shows a small lateral cartilage tear and a large PVNS mass behind the knee.

pvnsvet, I saw your doctor is in the Evanston/Glenview area, can you share their name? It sounds like I'm going to be messing with this for a while and it looks like it's best to be working with someone who is familiar with this condition.

However ... having it dealt with in Hawai'i sounds good too - especially this time of year!

bumknee

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25192
   Posted 1/31/2013 8:16 PM (GMT -7)   
welcome, and good luck!

david
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incont & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA 4/12 = 37.x
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries
Member of Prostate Cancer & Chronic Pain HW Communities since 10/2008
“I live in the weak and the wounded” – Session Nine (Movie)

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 1/31/2013 9:13 PM (GMT -7)   
Bumknee,

Welcome to HW and the CP forum....

However, this is an old thread.... so I'm locking it.... most of these members no longer visit our forum. But please feel free to introduce yourself by starting a new thread. Our members are very encouraging and supportive.

Take care --Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to e-mail me or ask on the board. Thanks!
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