I have EDS Type I or II (docs aren't sure). Here are some EDS sites
http://www.atv.ndirect.co.uk/
http://www.healthlinkusa.com/104B.htm
http://www.ednf.org/
Dear Looselinks:
Sorry to hear about your symptoms. I would try a different forum to get more information about your collagen disorder as they would be dealing with patients more frequently than neurologist. As far as the spinal problem, certainly your symptoms might be explained by your C-spine problems. One must always realize that surgery is the last option and whether complete recover occurs is a matter of surgeon, defect, patient, rehab, etc. Given your collagen disorder, one must be more cautious concerning spinal hardware as muscles and tendons are not the same in your disease and therfore the stress and strain placed on the hardware will be greater. This usually translates into more failures and problems.
Will your symptoms gets worse? Difficult to tell without seeing the films and doing the exam. I would think your into aggressive rehab to maximize your muscle strength and balance in the spinal area. What does your rehab and PT specialist say about your improvements and physical well being over the last couple of years. this would be the best gage concerning the progression of your disease and c-spine. If things are going down hill then surgery may be your best option as your degeneration is uncontrolled. If things have been relatively stable, then maybe continuing with the rehab might be the best.
I can't answer the question about multi level versus other types of surgery, I don't know you that well. I would think that stabilization is more paramount in your case than the average and multi-level would give you more stability. However, there would also be more stress and strain. It might be a wash in the end. Get several opinions from neurosurgeons after they examine you and see the studies done thus far.
I hope that things will be stabilized.
Sincerely,
CCF Neuro MD