Position of AANS - decompression for CFS/FMS

[Guest guest]

Hi Everyone. I wanted to post the letter I wrote to the AANS and there reponse.

Sue G

Thank you for your comments. The Position of the AANS solely pertains to the use of cervical decompression as a treatment for chronic fatigue syndrome. Until scientific data supports this, the AANS position on the matter is as stated. The position statement, however, does not state thatcervical decompression should be used for stenosis, as one of the main treatments used for stenosis (narrowing of the spinal canal) is decompression. I just wanted to clarify. Deia LofendoCommunications SpecialistAmerican Association of Neurological SurgeonsPhone: ; Fax: ; E-mail: drl@...The AANS is moving! Effective May 1, 2000, our new address will be 5550Meadowbrook Drive, Rolling Meadows, IL 60008. Our toll-free telephonenumber -- (888) 566-AANS -- will stay the same, as will all e-mailaddresses. CFS & Cervical decompressionI think you should rewatch 20/20 and reread the statements about cervical decompression and CFS/FMS. Dr. Heffez and Dr. Rosner are not doing surgery for CFS/FMS, they are doing surgery for Chiari and Cervical stenosis. I totally agree that surgery should not be done unless the patient has neuro problems. I have had neuro problems all my life, but the last four years they became much worse. I saw two neuro's who agreed I had neuro problems but did not know what was causing them ( I have been sick with CFS for 12 years). They attributed the problems to my CFS/FMS. I have been a CFS support group leader for seven years and have kept up to date on all the new treatments, studies, etc. I watched for about a year, patients of Dr Heffez, before I decided to seek him out to see if my neuro problems could be caused from another source. I had many neuro defecits, andwas found to have cervical stenosis. I had surgery in August and had many problems improve and some eliminated. I also had surgery in Feb for cervical disectomy, which has improved my headaches and neck pain some more. I realize this is not scientific data, but to me the surgeries were worth it for the relief they did give me. I didnot have surgery because I had CFS, I had surgery because I had stenosis.

Dr. Heffez clearly states that this is what the surgery is for. I am still ill with CFS, I still have many symptoms that keep me disabled, but at least I am not in as much pain and I no longer wake with two dead arms (from shoulders to hands). I am able to use my hands/arms for a longer period before they begin to go numb on me. My balance has improved. I no longerhave constant burning pain in my spine. I could go on with the list of things that have improved or have been eliminated. I understand the need to make sure people are not having surgery for just CFS/FMS. But I think your statement should clearly indicate that some people could have several problems combined, or may be totally misdiagnosed, and may actually have Stenosis or Chairi and that they should seek out aqualified Neuro and have a complete neuro exam and if they do have neuro problems, then find out if they have chairi/stenosis and if so, seek out a qualified neurosurgen. Regards, Sue Gallagher