Chiari Online Support Group

Surgery with probable EDS


#1

I plan to get my decompression soon. I’ve realized that I may have hEDS. I’m hypermobile and have always bruised easily. My skin isn’t stretchy but it’s always been very soft despite the fact that I hardly ever use moisturizer. If I do have it, I don’t think it’s that severe. I’m wondering if I should get checked out for it prior to surgery or should I just give my neurosurgeon a heads up of the possibility of hEDS. He’s performed many decompression surgeries and one patient has EDS but she was able to regain strength in her neck after wearing a neckbrace for some time.


#2

List your family history before any surgery and if you think you have EDS it certainly should have been discussed with your primary care physician.
Building upon this just prior to a surgery brings two complications together at once and one of them sounds as though you have not addressed it yet.
EDS is in my family and it is often noted by a developing family history. Any surgeon should be given notice of the possibility of EDS and since there are many types of EDS inform them of the suspected type.
Family history is often put under the rug by many families and it is pertinent to the health and well being of all family members present and future. Living life in denial can create an unnecessary detriment to a family’s safety and well being.
EDS and Chiari often go hand-in-hand and both need to be part of your ongoing healthcare; I have an Internal Medicine Doctor as my primary care physician and they are very proactive and deal more often with more complicated patient history’s.


#3

When I first heard of EDS I didn’t think I had it. I don’t have stretchy skin and I didn’t think I had hypermobility. I just realized maybe a week ago by watching medical videos that I am hypermobile. My surgery has been put off for now as I lost my insurance and had to get medicaid. The surgeon I first saw doesn’t accept medicaid. Luckily, there’s a surgeon about an hour and a half from my city. I’ll have to do th evaluation again with him so I’ll talk to him about it then.