Looking for advice on pvns

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New Member

Date Joined Mar 2009
Total Posts : 6
   Posted 8/1/2009 3:02 PM (GMT -6)   
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?

Veteran Member

Date Joined Mar 2009
Total Posts : 1158
   Posted 8/1/2009 3:11 PM (GMT -6)   
Welcome andy09 and I'm thrilled you started your own thread.

Members will be along shortly to add there advice. I hope you find some good sound advice. But for us who know nothing about your condition we will be here to support you.

Keep us updated.

Kidney Diseases and Disorders
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........ I think I have it all

White Beard
Forum Moderator

Date Joined Feb 2009
Total Posts : 3702
   Posted 8/1/2009 3:23 PM (GMT -6)   
Hi Andrea
Welcome to HealingWell CP forum, first off to answer your question about knowing any Doctors in your area, I am afraid I can't help you with that, have you tried Googling for it,? I have found that you can find just about anything if you try Google, so that might be worth while trying. Anyway I am sure somebody will come along and have some suggestions for you! I did want to weldome you to this forum, if your having pain this is the place to be! I really think you will find some of the best and most compassionate and caring people right here at this forum that you will find any where!

Sorry you have pain and about your condition, I have read about it before but that is all! It is really rare! But I am glad you have found us! I do hope you will stick around and join our group!

Again Welcome Andrea

White Beard
Moderator Chronic Pain
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV

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