Sorry this is going to be LONG but PLEASE READ (that way I dont have to explain everything 1000 times!). For years I have been in pain, whole body pain, but I try not to talk about it. Nobody likes complainers right? Well over the last few years it has gotten pretty bad. To the point of much difficulty moving. The funny thing is it was transient, some days Id have it others it was gone or nearly gone. I was seeing doctors who couldnt find anything wrong and would give me cortisone shots and send me on my merry way. It wasnt until July of 2012 that I decided there was more to my pain than the doctors were seeing and I researched what it could be. Well, I found it! Fast forward to April 2013 and myself and all 4 of our children were formally diagnosed with a degenerative disease called Ehlers Danlos Syndrome Hypermobility type (HEDS). Doctors think it to be very rare but it is only rarely diagnosed. This week I traveled to Baltimore, MD to see a true EDS specialist. What he found left me with mixed emotions. I knew deep down that I was as screwed up as a soup sandwich but denial also said no, youre fine and he wont find anything. The appointment was intense and there wasnt enough time to go over half of what I went for. In the long run he focused mainly on one section of my neck, the upper part of the spine (C1 & C2) where it meets the head (occiput). He did glance at my thoracic spine and acknowledged that surgery is recommended there, too. I have 2 major problems at the head/neck junction. 1. Cranial Cervical Instability (CCI) and 2. Atlanto-Axial Instability (AAI). They are both very serious and as far as I know none of my support group friends have ever had both together. CCI is an issue with flexion and extension of my head and AAI is a problem with rotation. Both indicate I move too far and it compresses my spinal cord. I will be fitted for a cervical collar (hopefully) next week that I will have to wear until I go in for a follow up in approx. 3 months. I will also have to do physical therapy to prevent muscle atrophy. At that follow up he will determine whether or not I will make a good candidate for occipital to C1-C2 fusion surgery. He will also determine whether or not the thoracic spine issue needs to be addressed first. Anyway we look at it there will be multiple visits out East with the possibility of more than one surgery. All-in-all I wanted to get the word out about seeing me in a collar because I know Ill be asked hundreds of times. As always, Im an open book, so please feel free to ask me question. Oh, and please feel free to make fun of me as I feel humor will help get me through this! My husband has been having a blast!!! :-)
Posted on: Fri, 28 Mar 2014 15:50:26 +0000
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