# Surgery for FM/CFS?



## weener (Aug 15, 2000)

Hi Everyoneid anyone watch 20/20 tonight? I caught the last couple of minutes of the segment on FM/CFS.Apparently there is some type of surgery that you can have to cure FM/CFS. What was this all about?I would like to find out more about this segment. I'm not one for surgery, but was more curious.Apparently, the neurosurgeon who spoke on 20/20 tonight will be available to answer questions on Monday at 4:30 p.m. ###abcnews.comIn the meantime, I'll try to find out more info.


----------



## weener (Aug 15, 2000)

Found more info regarding this 20/20 article. Type in www.abcnews.com and it will take you to the article.It is a very interesting article. In the experimental stage. Also, the neurosurgeon will be available at 4:30 p.m. (eastern time).I'd like to hear what everyone thinks about this.


----------



## moldie (Sep 25, 1999)

Hi weener, I did see the 20/20 show in its entirety. I had also mentioned it at the fibro meeting as our coordinator had the FM Aware newsletter from the National Fibromyalgia Awareness Campaign out of LA,CA. discussing this surgery. Here is the article written by Lynne Matallana:"In a world where the treatment for Fibromyalgia has been limited to rest, exercise and antidepressants, it's hard to know how to react to a front page headline in the Wall Street Journal reading, 'High Hopes: Surgery on the Skull for Chronic Fatigue? Doctors Are Trying It.' Neurosurgery to help relieve symptoms of Fibromyalgia, in a group of FM patients who have been diagnosed with constriction of the brain or spinal cord as a result of a too-tight skull or spinal canal, has become a hot topic of debate among medical experts. Although numerous patients who have undergone the surgery have touted it a success, there are still many questions yet to be answered. Now that the press is covering the story, patients must understand that this is another exciting step in understanding a possible cause of FM symptoms, however it is still very controversial. Not all patients will meet the criteria for surgery and the number of people who could actually be helped by it varies depending on whom you are talking to.The pioneer of the surgery, Dr. Michael J. Rosner, of Park Ridge Hospital in North Carolina, contends that within a group of patients who have been diagnosed with Fibromyalgia or Chronic Fatigue Syndrome, there will be those who, with the proper MRI and neurological exams, prove to have what is called "cervical spinal stenosis." Patients with these conditions complain of pain numbness, and difficulty with concentration. Dr. Rosner, who already had become renowned for his work on "Cerebral Perfusion Pressure as Related to Traumatic Brain Injury," recognized that many of his Chiari surgical patients had a Fibromyalgia diagnosis. He also started to do surgery on patients that did not meet the previous surgical definition. These patients did not have extensive herniation of the cerebellar tonsils into the base of the skull, but did show compression against the spinal cord limiting spinal fluid flow. The result, patients such as Dr. Sam Banner of Alaska, who had been diagnosed with CFIDS in 1989, underwent the surgery in 1995, and showed a marked improvement of symptoms, Since that time, Dr. Banner has become a champion of the surgery and Dr. Rosner has performed the surgery on about 250 patients.Dr. Rosner is not alone in his belief in the benefits of cerbral decompression surgery. Others within the medical community have extended their support, and joined him in performing the surgery in other parts of the country. Dr. Jon D. Weingart at John Hopkins and Dr. Dan S. Heffez of the Chicago Institute of Neurosurgery and Neuroresearch have performed about 75 surgeries. Dr. Heffez says that 100% of his patients have improved from the symptoms of disorientation, dizzyness and diffuse pain and 95% have been relieved of insomnia.Dr. Daniel Clauw of Georgetown University is skeptical. He feels the number of Fibromyalgia and chronic fatigue patients that fit the neurological criteria is very low. He would like to se a controlled clinical trial, which would clinically evaluate this work. Others are concerned because this 'treatment' involves major brain surgery and they believe that some of the operations may be unnecessary and not beneficial.Lauri Hogle of Maryland is thankful that although the surgery is innovative and controversial, she allowed Dr. Weingart to perform the surgery. 'As of May 28, I have been rescued from death and am in a new season of life. All is normal, healthy and functioning.'" (This publication was from the fall of 1999)Thanks for the link. Did you post a question at the site? I did, but it was so long it didn't include all of it. They said to include other stuff besides the question. (I did get the question in though). It is a pretty drastic measure. If I was barely able to function, I might consider it though. Right now I just want my gut to heal first. It will be interesting to see more research/cases on this. This should be a pretty hot topic at the next FMS Convention.


----------



## Guest (Mar 12, 2000)

Hi ladies, I first heard of the Chiari malformation in the CFIDS Chronicle last year. It is very controversial right now and more studies need to be done. I sighed a big one at the beginning of the 20/20 show when they touted it as a "miracle cure", but was happy that the Dr in the end of the program said it did not "cure" CFS/FM but relieved symptoms in SOME people. It is always kinda scary when new treatments come out, desperate people will do anything sometimes. We CAN be desperate people at times!! It gave me the chills when they started to cut the bone and you could hear it! I will be one that is going to keep a close eye on this study. I receive quite a bit of info in this subject from my CO-CURE group.


----------



## moldie (Sep 25, 1999)

Bumping up for more responses. Tell us about your Co-Cure Group DSG; is that a fibro/cfs support group or something more?weener, or anyone did you ask questions of the doc on Mon.? I forgot about it!! I wonder if they posted the questions/answers on the abc site.


----------



## weener (Aug 15, 2000)

Sorry Moldie I wasn't able to make it on the chatline to ask questions. I had a family emergency. Maybe someone else did.


----------

