NEW PVNS

Posted , 5 users are following.

Hi all.  My 16 year old was just diagnosed, and I was wondering about long term use of her knee. Will she be able to dance again? Also did anyone have very tight hamstrings before this.  Seems both she and her Dad both have knee problems and could never touch their toes.  Wondering if this has been a long standing problem that just showed itself after injury? Also has anyone taken preventative meds for MRSA prior to surgery? Thanks.

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  • Posted

    Poor thing, at such a young aga, have you/she had a second opinion.  I am not knowledgeable regarding PVNS and the little I do know is..... as the saying goes "a little knowledge is a danger... There are people on this site that are sufferers so am sure they will give you better advice.  Good luck
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  • Posted

    Don't believe it is necessary if you don't test for MRSA. I was tested and found not to be a MRSA carrier. I also used a special scrub the night before and the morning of.
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    • Posted

      I'm just curious if you or anyone you know has scoliosis or incurred a hip injury, or fall around the same time? My daughter fell skiing and now has a lumbar fracture and new scoliosis.  Seems to me her hips are now out of aligment  which would surely affect the knee.  Also any thoughts about really tight hamstrings prior to this?
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  • Posted

    Hi. I'm new to all this (more experienced with shoulders!) what does PVNS mean? Thank you.
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  • Posted

    This disease has so many variables that there are no definites, I'm afraid. Generally surgery is required although I actually several surgeries just to drain large quantities of blood (3x's 200cc each and 6 times with a needle each between 65 and 75 cc). This from Sept 8 through the and of the year. Than I had 30 rounds of radiation @ 75% and finally a scope synovectomy (removal of the synovia , the lining , around the knee. Youur daughter is about the usual age, teens to 40's for the tumor to surface. I was 65 1/2. In my case I've had numerous other surgeries (total of 11) and they know there is still some of the tumor remaining that they can't reach because it sits in a bundle of nerves. Others will tell you of the pain and then one or 2 surgeries. Please try not to be discouraged. I've had an orthopedic oncologist in on mine and felt I've had as good of care as I could possibly get as this is such a rare disease a lot of Dr's have no history. When it 1st blew up I was going to a young surgeon in a practice of 8 orthos with over 100 yrs total experience and none of them had seen it. If you are located where you have a pediatric ortho I would recommend that direction.

    I go to a teaching medical center where they are a reference center for a large area. My surgeon is a teaching professor and had treated over 20 cases and we have a large children's hospital in the metro area and I've visited with a staff member there who has seen several cases.

    Once again, don't let someone's history be the benchmark for your daughter but be very patient and alert when you are applying the various solutions. Personally, I'm not sure a Dr worth his salt would give you an absolute on your daughters future a dancer or as an active athlete. This may be a point that she will have to seriously consider the amout of pain she can endure to guide her.

    I will tell you this......only those of us 34th a t have have pvns can fully understand the pain level that goes with it.

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