Subluxation in neck 8 months since last surgery

[Laurenna796]

I have Ehlers Danlos and since a very young age partially dislocate or completely dislocate several joints in my body. I have shifted my T4 enough times that my disc is herniated into the nerve space I was diagnosed with this 12 years ago and it's never going away (I also have a herniated disc in my neck that is not pushing into any nerves).

I had the decompression surgery March 15th, 2016 and had to have a second surgery April 9th because my incision opened to the dura (thanks to my EDS, weak skin). I am starting to have the shifting feeling in my neck which is the same sensation I get when I know if I don't quit what I am doing my back will go out. I have told all of my doctors about this and they don't seem to understand. I am terrified if I shift my neck out it will seriously damage something.

Long story long is there anyone else who has had this weakening of the neck after surgery with EDS? If so my daily strengthing is not helping how do I correctly explain this to doctors who don't fully understand my condition (neuro vs ortho)

[selmaS]

  Hi and welcome to the Chiari forum.

I too have EDS and Chiari and yes I did have a very weak neck post op....I was given neck exercises to do post op and continue to do them....I was even told I would need a fusion at some point and it is 8 yrs later and still no fusion...my neck is stronger then ever too. I really feel the neck exercises helped....and when in a car I used a fluffy big pillow to help hold my head from bobbing all around....

Was your Dr a true Chiari specialist? Did you have a dura patch placed?

If your Dr is well aware of EDS and this surgery they will understand your problem....with decompression and laminectomy this makes the neck more unstable then it was with just the EDS issues....

I really feel I was lucky as to how I mended and how strong my neck has gotten.....

May I ask just what you are doing to help strengthen your neck?

[Laurenna796]

Unfortunately the surgeon that preformed both of my surgeries is no longer with the hospital. I wouldn't return even if I could. I had a stroke in my cerebellum during the surgery. I did receive a patch as well as had my cerebellum cauterized to "shrink it back into place". The surgeon was since arrested for her 3rd DUI... enough said there I am sure.

I have gone to the Chiari clinic near me who referred me to the medical college in my state. I am afraid no one want to touch me because I am a risk patient. Since the surgerys my symptoms have all returned and all of my underlying issues have escalated (bed ridden and EDS is not a good combo) I am also being tested for POTS. I have been through multiple neurologists since and don't know how to broach the subject in a way to have him understand how I know it's going. Hard to explain this fact to people who don't have EDS or haven't experienced the sensation. I have continued to do the resistance excersizes they recommend post surgery. My physical therapist has stopped treating me because my body temperature fluctuates rapidly and until they figure out all that's going on she was afraid she was doing more damage than good. Can you recommend any other exercises?

This surgery has its risks and I didn't fully grasp that concept before. Who really could? But in finding this community I truly appreciate the time you take to help others.

[selmaS]

  I do have a chart of exercises but read my comments below the chart to see which were the ones I was to do as not all on the chart are ok for us.

http://www.medhelp.org/user_photos/show/171420?personal_page_id=197028&photo_collection_id=1369