Capsular shrinkage - HELP!

Hypermobility Forum for people with Marfan, EDS: Surgery: Capsular shrinkage - HELP!
Top of pagePrevious messageNext messageBottom of pageLink to this message   By Valerie Plant on Wednesday, June 07, 2000 - 11:02 am:

I'm scheduled to have this procedure on my shoulder in a couple of weeks. Has anyone else had it? I'd be very, very interested to hear of others' experiences with it, considering it's too new to find much data on. Please help!!

Top of pagePrevious messageNext messageBottom of pageLink to this message   By leona perotti on Monday, June 12, 2000 - 05:52 pm:

Hi. I had a capsular shrinkage almost a year ago.
I had no releave and two weeks ago, I had a new operation in my shoulder to fix it again.The doctor told me that they could't see that i had has the capsular shrinkage because all the tissue was extemely lax because the hms.

sorry for the bad english, i am dutch.

greetings leona

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Lynn on Monday, September 11, 2000 - 05:19 am:

Dear Valerie- Sorry this message is so many months after your surgery. I hope everything went well with your recovery from the capsular shrinkage. My daughter (16 with EDS III) had this on her shoulder in 1/00. She started fairly aggressive physical therapy in 3/00 which continued until last week. She's now on a home exercise regimen to keep the joint (and other joints!) strong. The shrinkage did work for her- although it's only been nine months! She's already started talking about doing the other shoulder! She's an athlete- this surgery has allowed her to swim again (all strokes except the butterfly- she doesnt's have full range for that stroke yet). Before the surgery, she couldn't pass papers behind her in class without dislocating. PT has been a very important part of her recovery- plus she will always have to keep her muscles strong to support her joints. Just make sure your PT really understands EDS/ Hypermobilty! Only exercise in the middle range of each motion- don't do full range on any muscle with a loose joint (which for my daughter is every joint!) Good luck!

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Roseann on Monday, September 11, 2000 - 10:59 pm:

Dear Lynn;We saw your message to Valarie, and would very much appreciate any help you can give us. Both our sons ages (9,12) have hypermobile joints with generalized laxity. Our oldest has already had surgical repair of one shoulder that kept dislocating. Could you tell us the problems you had in finding the correct diagnosis. We have gone to several with out receiving much help. How did you find doctors and physical therapists that knew what they were dealing with? What area of the country are you in and where did you take your daughter for this procedure? What tests did they do to diagnose EDS III ? What is EDS type III? Do you have any history of similar conditions in your family? Please help we are desperate parents trying to help our children. Thank you.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Lynn on Wednesday, September 13, 2000 - 05:35 am:

Hi Roseann! You sound as confused and desperate as I was (and sometimes still am). First, visit these three web sites for more info, especially for a good overview of the different types of EDS: www.ednf.org (this US site has explanation of types, a newsletter and will answer phone messages), www.ceda.ca (Canadian site with lots of useful info plus a wonderfull woman-Jill- who's a knowledgable and caring source of info) and finally www.hypermobility.org (I'm just getting into this UK site). Also, keep checking here for people who've "been there". I'll e-mail you with more info.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Lynn on Wednesday, September 13, 2000 - 05:38 am:

Hi Roseann! You sound as confused and desperate as I was (and sometimes still am). First, visit these three web sites for more info, especially for a good overview of the different types of EDS: www.ednf.org (this US site has explanation of types, a newsletter and will answer phone messages), www.ceda.ca (Canadian site with lots of useful info plus a wonderfull woman-Jill- who's a knowledgable and caring source of info) and finally www.hypermobility.org (I'm just getting into this UK site). Also, keep checking here for people who've "been there". I'll e-mail you with more info.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Jayne on Sunday, September 17, 2000 - 12:59 pm:

I had a capsular shift on my right shoulder in september 1999, by april 2000 my shoulder was more painful and more lax than ever. I am now waiting to have an mri and this will tell me whether I need another operation. Every joint in my body is hypermobile. Not only is my shoulder painful, my upper arm is numb as the surgery damadged nerves in my arm. Can anyone offer any advice as I am only 19 and would like to get back to my proffesion as a groom.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Rachel on Sunday, October 01, 2000 - 08:59 am:

I had the laser capsular shrinkage procedure 12/98. It only worked for 20 months, even though I gave up playing sports and kept up my PT. My doc says now, that there really isn't anything he can do. I simply seem to stretch out of any repair.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Greg on Wednesday, July 25, 2001 - 02:06 pm:

Hey all,

I hope people still read this strand because this message is months and months later. Anyway, I have had successful bankart surgery to stop dislocations six years ago. The shoulder has not dislocated since but still causes pain. When my other shoulder started slipping out, the surgoemn recommended surgery since dislocation was "inevittable." So, being the good EDS patient that I am, I didn't listen to the orthopedist :) I inquired about thermal capsular shrinking and found out the EDS people are not good candidates. I ended up having prolotherapy on the shoulder and it has been a godsend. The shoulder hasn't even slipped a little bit in over a year! I would definitely check out prolotherapy before you surrender to surgery. I have also had prolo on my neck, and I've never experienced a negative side effect, unless you consider more strength and stamina bad. GOod luck to all!

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Lexie on Tuesday, September 23, 2003 - 07:29 pm:

What is Prolotherapy? I have had an E-tack and dual capsular shifts on my shoulder. I have also had patella shifts and bone reconstruction on one knee. The shoulder is much better but the knee is awful!!!


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