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EDS and Cervical spinal stenosis
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EDS and Cervical spinal stenosis

I have Ehlers Danlos Syndrome III but have fragile skin and excessive scarring.  I have had 3 previous lumbar surgeries to correct severe stenosis.  After the last surgery, I developed spontaneous tear of the dura and leaked cerebrospinal fluid for 15 days before it was corrected.I also developed 2 deep tissue infections which to 5 months to resolve and ended upwith a non-union etc. As a result, I am not anxious to have any more spine surgery.

My current symptoms are: dizziness without vertigo (not an ENT problem),sciatic pain in right leg, left knee pain and tingling in left hand and fingers  w/o thumb.  I also have severe muscle spasms everywhere that are controlled by large doses of Zanaflex.

The MRI results:
Severe central stenosis at C4-C5 related to disc osteophyte complex.  There is flattening of the cord.
Moderate to severe stnosis at C5-C6 and C6-C7 moderate stenosis at C7-T1 as well as bilateral neuroforaminal stenosis at these levels related to disc osteophyte complex and uncovertebral hypertrophy.

There is mild stenosis from C2-C4 that is not considered significant at this time.

My question:  How many of the above symptoms can be explained by the spinal stenosis?  Is there a way to relieve them non surgically? If I choose to do nothing now, will this get worse and be harder to deal with later?  Since the ligaments holding my spine are all stretching out causing the arthritis /DDD,would a multilevel one time fusion be preferable?

There is next to nothing in the literature about the effects of EDS and surgery. But I can tell you from my experience and other EDS patients that complications are much higher in our group as are non-union failures.  If you have any info on EDS and Spine problems,I would appreciate it.

Thanks for any advice or information you can offer
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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
2 Comments
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Avatar_n_tn
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/
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