To put into perspective just how dramatic my atrophy issues are..following this procedure (MPFL reconstruction), patients are typically in the brace for 6-8 weeks. I have been in this brace for 4 months and realistically have several months to go before I will be strong enough! However, I have had some pretty significant breakthroughs in therapy--elliptical and balance/strengthening exercises--so my recovery is finally heading in a positive direction!
I am still waiting to hear back from Boston to schedule my next 2 (hopefully last..for awhile) surgeries! I will post when we have a finalized plan and the dates are set!
hey,i am from south-africa..i read your blog and i was overwelmd, i realy can feel your pain because im going trough more and less the same battle as you are.i am only 19 turning 20 in sept,i was last year tested for EDS TIPE4,the vascular tipe, but after 3 years the docters could not told me, whats wrong with me, the docters in south-africa are not realy firmiliar with EDS,and they dont have aney vasilities to tests for EDS,so they had to send it oversees,my results did come back and they were negetive, but they still dont know what is wrong with me,they are testing me for the marfan sindrome and the loey ditz syndrome,i loved to play sports,hockey was my favourite,but i had to give it up, i cant imagne all the suregries you have been trough,with me they cant operate they say its to risky my vains are to week, sometimes i have to be in a wheel chair,but i lived my self in having EDS,the docters says i have all the syntomes, but i realy admire your positive attitude,being positive and having all the wonderfull suport of friends and family realy helping me to cope,i have not met or talked to someone who have EDS,or knowing what im going trough, i would realy like to hear from you, you can e-mail me,at www.yolandilouw@yahoo.com...God bless*
ReplyDeleteYour blog has been so helpful and positive. My 13-yr old daughter is having MPFL with Dr Yen in a couple weeks. She was officially diagnosed with EDS - Classical type with Raynauds last week. We are fortunate to live in suburban Boston so Dr's visit are simpler to get to.
ReplyDeleteGood luck with your recovery.
Thanks Jenn! I am sorry to hear that your daughter was diagnosed with EDS. I am glad my blog has been helpful. If you have any other questions regarding the procedure feel free to ask. Dr. Yen is great and understands EDS--make sure he knows that she was officially diagnosed! I have Raynaud's as well. It's a tough life! : )
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