PVNS: Best Surgeons and Patients' Experiences?

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Kandace
New Member


Date Joined Jan 2012
Total Posts : 3
   Posted 1/17/2012 11:38 PM (GMT -6)   
Hello everyone! I was diagnosed with PVNS in both ankles several years ago -- with very extensive damage to my right ankle that required a subtalar fusion. Doctors believe it has now returned in my left ankle such that a subtalar fusion in that ankle is also likely necessary.

I spent most of my time prior to my last surgeries researching the surgical procedure I was to have instead of PVNS itself. This time around, I've learned that many patients see orthopedic oncologists for this problem. Can anyone recommend a skillful and compassionate surgeon (orthopedic oncologist, orthopedic surgeon, or podiatrist) experienced with PVNS in the Milwaukee area?

I was also alarmed to read that some doctors believe PVNS can become malignant(??), though only exceedingly rarely. Though my amount of bone loss seems to be significantly less this time, my symptoms (which include many different kinds of pain/sensations and a nearly complete inability to walk) have been far worse and have heightened my concern about this. I'm wondering what others with this disease have experienced in terms of types of pain/kinds of symptoms -- specifically whether they are worse during a recurrence than at initial onset?

Thank you so much -- and please let me know if I can help anyone by sharing any of my own PVNS-related experiences!

Kandace


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3695
   Posted 1/18/2012 12:20 AM (GMT -6)   
HI kandace welcome to Healing Well Chronic Pain Forum.  I read your other post on the other thread and am glad that you started a new thread introducing yourself. I am not familiar with your area, but have you considered, checking out the the Medical school in Madison I have heard of others that have went there for various conditions and have had very good results. Also have you thought about going to Mayo clinic, or checking them out on line to see if they have any specialist that handle your condition? I don't think that would be that far for you to go, if they can help you. Just something that you might want to consider.
 
Again I Welcome you to our forum and I wish you all the best!
 
White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, 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 I am White Beard with a White Beard!

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 1/18/2012 2:56 AM (GMT -6)   
Hi again Kandace, and thanks for starting a new thread.

I'm not familiar with PVNS - I had never heard of it until it was mentioned in the thread you replied to previously, but White Beard has given you some good starting points. Can your family doctor be of any help too?

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

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 1/18/2012 9:23 AM (GMT -6)   
Hi Kandace
I wanted to welcome you to our cp forum. Glad you found us but sorry you are suffering so much pain. I am sure you will enjoy the members here as they are very caring and understanding. I don't know anything about your condition but I do see someone else that has recently posted and has that same condition. I am sure they will be by to help you out.
In the meantime keep posting and let us know how you are doing.

Suzane

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 1/18/2012 9:26 AM (GMT -6)   
I just read that other thread and noticed it is an older post and that person may not be around any more. I hope someone will have some knowledge of your condition to help you out.

Suzane

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 1/18/2012 11:44 AM (GMT -6)   

 

          Welcome Kandace!

     I too am not familiar with this, but wanted to get in here and welcome you. Hopefully someone will have some experience with it, and can submit a reply here.

     Take care, and enjoy the forum!

        SE wink


Moderator Chronic Pain Forum

Weekly Quote!

"Getting over a painful experience is much like crossing monkey bars. You have to let go at some point in order to move forward."

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16304
   Posted 1/18/2012 12:05 PM (GMT -6)   
Hi Kandace, I wanted to pop on and tell you welcome aboard too. In the past we have had some people come through the forum that had PVNS. Unfortunately, they did not stay around long, there was maybe at best 1-2 people at a time that had this condition and I guess they were needing more support from others with the same condition because none of them stayed around very long. You may want to use our Search feature here at the forum and see if you can pull up any of their old posts. If you will look at the top right and just type in PVNS the old posts should pop up for you.

I do hope that you will decide to hang out with us here at the forum. One thing we all understand and thats pain regardless of the condition. Again, welcome aboard.

Take care.
Moderator Chronic Pain Forum

jackiejulia
New Member


Date Joined Feb 2012
Total Posts : 1
   Posted 2/8/2012 9:47 PM (GMT -6)   
Hi Kandace. I have pvns and had an ankle fusion 2 yrs ago. I'm 38 yr old female. 5'2". 135lbs(3 mo post childbirth) .
I have had 4 ankle surgeries in 5yrs. I was told that once I had the fusion, the pvns wouldn't return. It did. After the fusion healed, I was still in a lot of pain and my ankle would swell after minimal activity. I had mri and Ct scan that showed it returned. I was convinced that the hardware had something to do with the swelling and near constant pain so I requested it be removed. Dec 2011---2 mo ago--- I had surgery to remove hardware and cyst and the remainder of my synovial lining around my joint. Dr thinks the partial lining is what caused the return. I am currently full weight bearing but still have a lot of pain. The pain is not constant but it is very similar to the feeling of previous yrs. I'm pretty certain my surgeon has given up and as you know, finding someone who can help is almost impossible. My search continues.
best of luck, jackie

LJBoston
New Member


Date Joined Mar 2012
Total Posts : 2
   Posted 4/2/2012 5:14 PM (GMT -6)   
Hi Jackiejulia,
I also had a fusion. I have recently been using a cane. I fought this for a few years but am fiding it helpful. I also had my screws removed hoping it would relieve the pain. I still experience discomfort. I limit my ambulation through out the day. My doctor is at the Faulkner hospital, in the Boston area. I am only his third patient with PVNS. I will need another fusion in the same ankle above or below the area I had the first fusion. I am putting it off as long as possible. I have a rocker bottom put on my tie shoes on my left shoe. I buy specific heel newtral shoes. My PVNS was diagnosed 7 years ago, when I had a synovectomy. I thought I would return to full activity, it has not happened yet I also ice frequently with an ankle boot I purchased on line from PT United. It is excellent! Good luck! Linda

LJBoston
New Member


Date Joined Mar 2012
Total Posts : 2
   Posted 4/2/2012 5:23 PM (GMT -6)   
Hi Kandace,
I live north of Boston and was diagnosed with PVNS 7 years ago when I had a synovectomy. 6 years ago I had a fusion and 5 years ago had the screws removed. I do not take medication but am in pain often and have swelling by the end of most days. I try to omit my ambulation. I have recently begun to use a cane, something I was not open to until very recently. It has helped. I will need another fusion but am putting it off for as long as possible. I ice each day with an ankle wrap I bought on line from PT United. It is excellent. I buy ankle newtral shoes, have orthotics and have a rocker bottom put on my left shoe. I am very sedontary and I thought I would be more active after all of this. I am only the third patient my doctor has treated who has PVNS. Good luck! Linda

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16304
   Posted 4/2/2012 6:46 PM (GMT -6)   
Hi Jackie and welcome to the chronic pain forum. I do not know much about PVNS except we have had a few people filter through over the years with this condition. Mostly, they were asking questions and did not stay and become active members for whatever reasons.

It sounds like you have had a really difficult time and thats terrible. I see another new person named LJBoston has seen your post and has responded to you.

I am going to ask you to start a new post of your own as a introduction post. That way all the members will see your post and be able to give you a proper hello and welcome aboard. When a new person posts on an older one, most of the members never see the post, this is why we ask you to make your own intro post.

To start a new post click "post new topic" and give yourself a heading like new member with PVNS and click that and start typing.

Again, welcome aboard.....Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16304
   Posted 4/2/2012 6:53 PM (GMT -6)   
Hi LJBoston and I want to welcome you to the chronic pain forum.

I am going to ask you like I did Jackie to make your own intro post so that all the members will see it and be able to say hello and welcome aboard.

I look forward to getting to know you better. Thanks for your help....Susie
Moderator, Chronic Pain Forum & Psoriasis Forum
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