P.V.N.S also known as Pigmented villonodular synovitis

[Trixybell82]

Hi Peeps,

I had a bit of news on Monday that I wasn't quite expecting. I had a double Knee op in Dec (Arthoroscopy) to treat a condition called Hoffa's Fat Pad Syndrome and had some biopsies taken. Well the results have come back and it turns out I have this rare condition called PVNS and the thing they removed is in fact a benign Tumour.

PVNS is a joint disease characterized by inflammation and overgrowth of the joint lining. It also turns out I have the nastier of the two types of PVNS and will need radiotherapy to treat this further and possibly further surgery (Full knee replacement) as this condition can spread to the surrounding tissue and bone.

As PVNS is and inflammatory issue and I have lots of others such as IBS, Endometriosis, Asthma, Eczema, Hayfever etc my Surgeon thinks there might be a link and a underlying health condition that is causing all of these to manifest these things so he is now contacting my other Dr's,consultant's,surgeons to see my notes and investigate it further. I see him again in six weeks and will no more then.

I also had very excessive bruising for the surgery I had and my consultant is interested if this also is down do an underlying health condition. I'm just wondering if any of my Fibro friends have heard of this or suffer from it themselves?

Gentle Hugs xxx

[Ginsing]

hI tRIXYBELL,Sorry you seem to have been through the wringer and with more to come, I do hope they manage to sort you out well. In your list of problems do you have Fibro as well?

I suffered from excessive bruising hen I was in my teens and it turned out to have been incompatibility between part of my blood make up and my skin. The bruising stopped when I was in my twenties and nothing since, however my daughter has CFS and suffers with the same bruising.

I dont know if that is of any use to you, I do whish you well and I hope the next six weeks sees you improving rapidly

xgins

[Trixybell82 in reply to Ginsing]

Hi Gins,

Yes I suffer from Fibro too (unless the neurologist has miss-diagnosed me and it's really MS) which is what we thought it was at first. I suffer from chronic fatigue syndrome too and have lots of other health problems including an arachnoid cyst on my spinal cord and 2 protruding discs in my lower back pressing on both sciatic nerves down my legs. (I literally am falling to pieces)

Anyway gotta run (excuse the pun) as I have a physio appointment at 1.30pm.

gentle hugs x

[Fibrofoggiest]

Hi there Trixybell , you have had a really rough ride haven't you. I really hope you don't have to have too much intervention. PVNS isn't something I've ever heard of, but I have had experience with bleeding problems. I have a condition called Von Willebrands , which is lack of the clotting Factor VIII and is similar to haemophilia, but in women and it has varying treatments.

I am sending loads of positive healing vibes your way and do let us know how you get on !

Very best wishes

Foggy x

[Trixybell82 in reply to Fibrofoggiest]

Hi Fibrofoggiest, thanks for you thoughts & healing vibes, there much appreciated! Thank you xx

[TheAuthor]

Hi there

I am so sorry to hear of your current situation and I sincerely hope that things start picking up for you soon.

Take care of yourself

Ken x

[Hidden]

Hey there my friend

It doesn't stop coming for you does it? {{{trixybelle}}}

I've always had bruising issues, my elbow often goes a funny colour after a blood test and if someone touches me I bruise too

After my Arthoroscopy it took ages for me to heal and for the bruising to disappear.

My fingers and toes are virtually crossed for you hunny, it sounds like you have a good set of consultants, can I borrow them?

xxxsianxxx

[fibro]

Hi, not heard of the condition, but glad they were able to give you some results so quickly.

If they have removed the tumour at the same time as the arthroscopy, using the same incision, i would have thought the bruising would form part of the normal process.

Any incision for any instrument, whatever the size, would be disturbing the blood vessels and cause bruising. If however the bruising don't change say after a couple of weeks, but before that time, depending on the surgery, it is possible that the bruising may not have fully developed.

I'm only speaking from my own experience of several hip surgeries, but for your own peace of mind if you have any concerns call the consultants secretary and ask if he will call you back, or speak to your GP.

I'm afraid I haven't any experience myself in your other conditions to comment on those, but i wish you well and i hope that your arthroscopy has been a benefit to you.

I have had several friends who have had knee arthroscopies and once they have started walking properly again afterwards, they have been very successful and have meant a delay time in having to have full knee replacements.

I think that you have been very lucky to have found a good consultant who is interested in investigating things further. Xx