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  • PVNS Knee Surgery & Hip/Back Problems @ 22 - Pls Help!

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    Old 11-17-2007, 03:41 PM   #1
    JennyT85
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    Question PVNS Knee Surgery & Hip/Back Problems @ 22 - Pls Help!

    Hello everyone. I just found this wonderful forum and would like some advice. Here is my story. Sorry its a bit long.

    I am 22 yrs old and was in perfect health up until 2 years ago. I have been diagnosed with PVNS in my right knee 1 years ago following being hit by a taxi cab. As a result, I am dealing with a few separate problems that are affected by each other. I am scheduled to have an open synovectomy on my right knee on December 4th and would like any advice on preparing for surgery as well as recovery.

    My knee is always swollen full of excess fluid and a benign tumor has developed. I had an arthroscopy a year ago that was unsuccessful so now my new doctors are resorting to an open biopsy followed by radiation. The operation is a three-part procedure that will take up 4-6 months of my life after graduating college this December. The first procedure is opening up the back of my knee to remove the synovium (lining). The second procedure will remove the lining from the front of my knee. The third part is radiation treatment to make sure that every cell of PVNS has been killed in my knee so that the problem does not recur again. I live in NYC and rely on my legs to get me anywhere. I deal with the pain and swelling but am having a difficult time in juggling two different medical problems, along with a life. They are treated separately but one problem affects the other.

    Two years ago, I was hit by a taxi on Park Ave. and suffered multiple fractures: 3 ribs, L1 vertebrae, and 3 in my pelvis. I am young and determined and have recovered amazingly well. I did not need any surgery or casts, just a lot of rehab. From looking at me, you could never tell that I have any sort of problem. All of my fractures are healed now. However, my hips are unaligned and my spine is sort of curved and rotated. As a result, I have a lot of back pain. I am currently going to physical therapy and yoga classes to help correct this, but I am afraid that I will never get my alignment back to normal. I am seeing a very small improvement and my strength and flexibility is above average. I highly recommend yoga because it has been an amazing part of my recovery. I would like to add that I am very petite at 49 and 92 lbs and the world is not designed to fit small people, therefore contributing to my back pain.

    As I said, I was in perfect health before these two problems occurred. I am graduating college and should be on the start of my career and life, but these are holding me back. I am in the fashion industry, which requires a lot of commitment and working long hours in a stressful environment. This all contributes to my pain and recovery.

    I am very concerned that my upcoming knee operation is going to undo a lot of progress I have made in correcting my back and hips. I will not be able to do yoga anymore and many other exercises because I will not be able to bend my knee or put much pressure on it on and off for several months.

    If there is any advice you can give I would really appreciate it. This will be my first big surgery, and I am nervous. I would like to know what to do to prepare myself physically and mentally. I would also like to know any advice in healing, whether holistically, medically, nutritionally, or anything else. I feel way too young to be dealing with all of this but what can I do. I just have to deal with it the best I can and stay strong.

    Thank you very much in advance!

    Jennifer

     
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    Old 11-19-2007, 08:58 PM   #2
    MoLu
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    Re: PVNS Knee Surgery & Hip/Back Problems @ 22 - Pls Help!

    Hello Jennifer-
    So sorry to hear of you problems at such a young age. It is hard enough dealing with one problem let alone multiple problems. I have a little insight on what you will be experiencing and thought maybe I could help.

    I have a similar disease called synovial chondromatosis and also suffer with back problems. My disease is another synovial disease very similar to PVNS. Actually was dx'd with PVNS before my first surgery when they discovered I have SC. I have had 2 posterior open knee surgeries in the past two years but have not had radiation. I have read about this as a possible alternative. One word of warning regarding this - please ask the doctors's what options you have if the disease recurs after the radiation. PVNS has a very high rate of recurrence. I don't believe surgery would be an option then if the disease recurs.
    Rehab is long and hard but a must if you ever hope to get back your mobility. I have read that yoga is a particularly good rehab but I myself did not have much luck. Can you flunk yoga? I think I did! I find that pool therapy worked the best for me but then I'm a water bug! Anyway the idea is to keep yourself moving to strengthen your knee. My best advice to you is to have patience with the rehab. It took me a long time to feel more like myself after all my surgeries. I had really thought once I had the surgery I would be healed and all better. Totally underestimated the rehab. So be kind to yourself and work at it but be patient.
    If there is anything in particular regarding your upcoming surgery that you would like to ask please feel free. Hope I can be of service to you. We all heal in our own time but we all heal.
    Martha

     
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