PVNS PIGMENTED VILLIONODULAR SYNOVITIS. How do I cure my disease

By Keri McInerney November 27, 2012 - 9:11pm

Rate This

I have been diagnosed with PVNS Pigmented Villionodular Synovitis - in short a tumour in my elbow joint. I have researched so much about this disease as most doctors sadly know nothing as it is that rare. Usually it starts in knees, and hips but has been known to form in toes and shoulders....elbows however....are so rare its crazy. Just my luck. I have had some of the tumour removed. It was diffuse ( widespread) throughout the elbow and around ligaments, tendons, muscles etc and they were unable to get all the tissue so it is regrowing (slowly) but regrowing none the less.

I am now experiencing other joint problems with similar symptoms. I am very concerned about what is coming next. I know that chemo is possible next, but the thing I want to know is WHAT caused this thing in me and how can I heal myself. I know that it eats bone and tissue and joint replacements are also on the agenda at some point if more damage occurs.

My elbow has good movement (due to me having an amazing pysiotherapist after surgery) it is however starting to lock again...so I know that means tumour is growing more than it was. My shoulder is now an issue...no full diagnosis yet but questions on it at present for sure.

So if anyone can help me I would be indebted. This is a tough journey and I have been pushing hard to keep myself going as well as my career in music but it has been tough this past year to remain positive.

Hope you can help

Keri McInerney
www.kerimcinerney.com

Add a Comment2 Comments

Anonymous

Hi Keri,

My wife also has pvns in her right elbow. She started noticing symptoms about 15 years ago and thought it was just tendonitis. It wasn’t until about 3 years ago where we got the official diagnosis from a biopsy. We understand your frustration as this is a rare condition so there is little information available as to cause and more importantly effective treatment. We put her on a strict anti-inflammatory diet with lots of fresh organic vegetable juice and it has helped a lot (increase in range of motion and decreased in swelling.) I’m trying to also understand what the cause is. I recommend juicing particularly beets, carrots, turmeric, green apples, ginger, and lemon. She was drinking about 30 oz per day and also completely cut out all refined sugars and processed foods. Also decreased meat and dairy intake. It took about 2 months but then experienced significant results

Best of luck to you

October 25, 2018 - 9:44pm

This Comment

Improved My Health
Changed My Life
Saved My Life

Empowered

Rosa Cabrera RN

Hi Keri,

I had to do a little research on PVNS because I am slso not very familiar with this condition.

Here is a list of the most common treatment:

In most cases of pigmented villonodular synovitis, surgery is the best treatment option.

In the past, because of the high rate of surgical complications and local recurrence rates, physicians recommended observation (no treatment) until a total joint replacement was required. Today, with improved surgical techniques, the rate of surgical complications and local recurrence rates have decreased to such an extent that most patients are best treated with surgery.

For people who are not good candidates for surgery, anti-inflammatory medicines and muscle-strengthening exercises can help alleviate the pain and swelling.

There are several surgical techniques to treat pigmented villonodular synovitis. Your doctor will discuss with you the type of surgery that will be best for you.

Arthroscopy

Arthroscopic (camera placed inside the joint) partial removal of the affected joint lining with the mass is the treatment of choice for localized pigmented villonodular synovitis today. Arthroscopy is commonly successful because recurrence rates of localized pigmented villonodular synovitis at the same site are very low.

Open Surgery

In patients with diffuse villonodular synovitis with both the front and back of the knee involved (most patients), open surgery rather than arthroscopy is often the best treatment. Your doctor will need to remove the mass and the entire joint lining to treat diffuse pigmented villonodular synovitis.

Combined Arthroscopy and Open Surgery

When most of the mass is in the back of the knee, a combined surgical approach can be undertaken. The back the knee is treated with open surgery to remove the mass and joint lining, and the front of the knee is treated with arthroscopic removal of the joint lining. This combined method decreases the magnitude of surgery, allowing for an easier recovery.

The recurrence rate at the same site is higher in patients with diffuse pigmented villonodular synovitis, but with proper surgical technique, the risk of recurrence can be minimized.

Total Joint Replacement

In its end stages, pigmented villonodular synovitis can cause extensive joint destruction. Once the joint has been significantly damaged, the best option to relieve pain and improve function is a total joint replacement.

Radiation Therapy

Radiation therapy can sometimes be used for patients with diffuse pigmented villonodular synovitis that involves major nerve, tendon, or vascular structures or lesions that recur after surgery.

Radiation therapy is most commonly delivered via an external beam (treatment is directed from outside the skin to inside the joint). A newer method called intra-articular radiation (a radioactive fluid is injected into the joint with a needle) has been used as well.

Radiation therapy is usually reserved for patients in whom standard surgery has not been successful.

For more information, visit: http://orthoinfo.aaos.org/topic.cfm?topic=a00506

Best Wishes,

Rosa

November 28, 2012 - 9:07am