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pvns- yuck
New Member


Date Joined Feb 2011
Total Posts : 3
   Posted 2/14/2011 5:17 PM (GMT -6)   
I am so happy to have found this board and others that are similar.  I am 28 years old, and half 2 young children. I started having trouble walking- the pressure was sending a sharp pain straight through the top of my foot. Within about a week a small bump showed up on one side of my right ankle. I was put in physical therapy and they did ice massage (if you have never had an ice massage, it is not as nice as is sounds) on the swollen area and ultrasound- with no reduction. I was then sent to for MRI where it was determined I had PVNS, and a 2 X 2 mass that had just started entering my ankle bone. I was sent to a pediatrist, and when she mentioned surgery and having a surgeon assist- I became worried, and wanted a second opionon. I went to an Orthapedic Surgeon, and he wouldn't touch it.  He referred me a foot and ankle specialist and am awaiting my consultantion. 
 
My issue is, what started as a walnut size area - is baseball size, the other side of the ankle has a walnut sized mass, the back of the ankle has a small spot, and the side of my foot also has a mass. It has gotten this much worse in about 1 month- appointment is not set for 4 weeks. On top of that, I started getting pain in my other foot while walking, and now have the same small mass on that ankle.
 
I can't work more than a couple hours at a time, because if I am not laying down and walking around it swells so much- I can't feel my toes. In addition, the action required by that ankle to drive feels similar to sticking a knife through my foot.  My comfort is in the fact that while I may need to wait- I have one of the best, experienced with PVNS, Orthapedic Surgeons in WI, trying to fix it.
 
I have seen other stories, regarding PVNS, and it is so reassuring that I am NOT alone.  This is an odd disease that most Drs do not know much about, it is scary, painful, and in my case has grown fast. Any PVNS patients on here that did the radiation therapy???? Did it work?

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 2/15/2011 1:43 PM (GMT -6)   
Sorry I don't know anything about PVNS, however, someone might come along.
I wanted to welcome you and say hello, Hope you can get a low pain day soon.
If you don't mind what is PVNS?
((((((((((((((((((((((((pvns-yuck)))))))))))))))))))))))))))))
Healing hugz, well wishes and keep us posted on how your doing...

pvns- yuck
New Member


Date Joined Feb 2011
Total Posts : 3
   Posted 2/15/2011 5:17 PM (GMT -6)   
PVNS- I have learned nearly everything about from the internet. I finally got an appointment with a surgeon who should be able to help- NEXT WEEK!!!! So Happy!

"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. In PVNS the lining of the 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. PVNS is idiopathic, it doesn't seem to run in families or be caused by certain jobs or activities. Surgery can help but, even with treatment, PVNS comes back about half the time. If the pain remains then radiation therapy may help. In the worst cases the joint must be replaced." From Wikipedia

In my case the intially specialist I was waiting for, had me come to my appointment- looked at my MRI and Said- I won't touch this. He then referred me to someone else- he said radiation would probably be best in my case, because it has grown so fast. I believe the reoccurance rate after surgery without radiation is 45+%.

Melissa

pvns- yuck
New Member


Date Joined Feb 2011
Total Posts : 3
   Posted 2/15/2011 6:01 PM (GMT -6)   
Thanks Everyone for the Warm Welcome!! Paula, from what I have read on the internet that is my understanding. My tumor has grown faster than most in a short period of time, so I am praying PVNS is all that is wrong.

Thank You Again,
Melissa

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 2/15/2011 6:12 PM (GMT -6)   
I seriously thought I responded to your post earlier, but I must be having computer issues.....none the less....

I'd like to say hello and welcome you to HW. I have no knowledge of PVNS and cannot give any information or advice. I can say we are here for you if you need to vent or just need a kind word. It's really hard when you are alone in your pain so we come here to support each other.

Again, welcome!!
Failed fusion L5-S1, Pituatary damage, HGH Def, Fibro, Bladder surgery failure, Nissen Failure, GERD, OCPD, GAD, MDD, CTS (Bilateral Surgery completed), CFS, TMJ, Migraines, Vit D, A, Magnesium deficiency, Pre-glaucomic (sp?), HBP, Idiopatic Reactive Hypoglycemia, Edema, too many Drug/Food allergies, sensitivites, and current meds to list.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 2/15/2011 6:18 PM (GMT -6)   
I'm glad you have an appointment!
Please keep us posted on that and thank you for telling us about pvns.
(((((((((((((((((((((((((((Melissa))))))))))))))))))))))))))))
Healing hugz well wishes and hope you can get a low pain day
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Kandace
New Member


Date Joined Jan 2012
Total Posts : 3
   Posted 1/17/2012 10:24 PM (GMT -6)   
Hi Melissa (pvns- yuck),

I hope you've been doing better with your PVNS this past year? I am a fellow sufferer who is in need of more ankle surgery, as doctors suspect mine has returned. I'm very interested in learning the name of the great doctor you mentioned in Wisconsin! I hope you see this... and that your suffering is much less these days. Thank you for whatever help you can provide!

Kandace

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 1/17/2012 10:51 PM (GMT -6)   
Hi Kandace, and welcome to the forum here.

You've probably found this topic through the 'Search' function, so might not have noticed that it is nearly a year old!!

Can I ask you to start you own topic by clicking +Post New Topic at the top of the forum to introduce yourself that we all might welcome you properly? Thanks :-)

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

Kandace
New Member


Date Joined Jan 2012
Total Posts : 3
   Posted 1/17/2012 11:03 PM (GMT -6)   
Hi Laura,

Thanks so much for your quick reply and welcome! I did notice that Melissa's message was from almost a year ago, but was hoping it would nevertheless reach her somehow! I will start my own topic now, though, per your request.

Thanks again!

Kandace
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