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Author Topic: Looking for some advice (new here)  (Read 1366 times)

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Offline maggiesmom

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Looking for some advice (new here)
« on: May 11, 2006, 07:19:23 PM »
Hi I am Heather. Maggie is my 10 year old daughter.
Back in November her knee swelled up overnight, no pain, no stiffness no real discomfort. Since then she has had x-rays, ultrasounds, 2 MRI's and had the knee drained twice.
They are now telling us there are 2 things it could be. Synovial Chondromatosis or Pigmented Villonodular Synovitis.
The word is she will be needing arthoscopic synovectomy. As a parent I am freaking out. 4 kids and this is our first big health issue.
Does anyone know anything about these conditions in children? Recovery time after the procedure? Activity? Physiotherapy?
Any information will be greatly appreciated.

Offline jerman710

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Re: Looking for some advice (new here)
« Reply #1 on: May 11, 2006, 07:48:01 PM »
Hi Heather,
      I don't really have any advice, but I just wanted to wish Maggie well. I have a 7 yr old boy and I know what it's like to be concerned about your childs health. I get upset when he skins his knee falling off his bike :'(

Take care and good luck to you both,

Jerry
43 yrs old
6/21/05 arthroscopy rt knee meniscus tear
10/5/05 2nd arthroscopy rt knee another meniscus tear
2/15/06 Fulkerson, LR, debridement and yet another menscal tear Rt knee
10/18/06 microfracture right knee
10/23/09 debridement right knee
6/16/10 PFJR right knee scheduled

Offline maggiesmom

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Re: Looking for some advice (new here)
« Reply #2 on: May 12, 2006, 12:19:11 AM »
Thanks Jerry.

Offline maggiesmom

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Re: Looking for some advice (new here)
« Reply #3 on: May 16, 2006, 09:31:40 PM »
Wow. I have to say I am very disappointed. I thought someone might have some advice, concern, help.
Good luck all.

Offline ClimbingGirl

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Re: Looking for some advice (new here)
« Reply #4 on: May 17, 2006, 10:05:48 AM »
Hi Heather,
I was really sorry to read about Maggie's knee issues. I don't know anything about these 2 conditions but if you search for them on the knee forum then you should see some posts from other people who have had these diagnoses. I came across this website for PVNS that was posted in an earlier thread http://www.kneeandshoulder.md/pvns_01.html - it may be of help?
I know you're really worried but the best thing is to get the proper diagnosis so you know what you have to deal with.
all the best, keep us posted on how things go.
CG
Several L kneecap subluxations
R kneecap dislocation '00
Diagnostic scope Jan '06
R MPFL reconstruction & lateral release Mar '06
L MPFL reconstruction Dec '07

Offline MoLu

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Re: Looking for some advice (new here)
« Reply #5 on: May 23, 2006, 04:43:50 AM »
Hi Heather/Maggie-
I too have Synovial Chondromatosis but am 55 years old.  I was diagnosised last August.  I  had it first diagnosised thru an MRI as PVNS or SOC but until my first arthoscopy it was confirmed as SOC via a biopsy.  Both diseases are very much alike - a synovium that has gone crazy.  I'm so sorry to hear of your daughter having such a nasty disease at such a young age.  I have been posting a thread on this site thru all of my surgeries under Soft Tissue .... Can't remember the exact wording but scan down the list of subjects and you will see synovial chondromatosis now listed as one of the conditions under the Soft Tissue heading.  Please read my experiences and feel free to contact me at any time.  I know it's pretty scary and there are not many of us out there.  If your daughter finds out it is PVNS there are other forums for that only that will offer you some help.  Check out Delphi Forums.  They have a very active chat forum on PVNS.  One bit of advice I can give that I read over and over is to go to an Orthopedic Oncologist who will have some experience dealing with this disease and tumors in general.  Thank God they are benign.  OS's just don't have the experience because there are so few of us around.  Where are you located?  Take care and I'll be thinking of you.  We need to stick together for encouragement.
Martha
Synovial Chondromatosis
9/16/05 Frontal synovectomy and tumor removal
10/26/05 Posterior open knee surgery and synovectomy with tumor removal
3/8/06 Disease is back
4/26/06 Frontal arthoscopic synovectomy and posterior open knee synovectomy
6/23/06 Disease is back
7/24/07 Synvisc
10/23/08 TKR















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