sensitive to sounds?

[Merida]

Loki,
If the doctors can find the exact problem - the answer is probably yes in many cases. A dear friend had relentless back pain after lifting a bag of soil amendment. Was bed-ridden at times. He struggled with his HMO for tests, etc for several years. Finally, he somehow had contact with an old college colleague who was a neurosurgeon. His case was reviewed and this surgeon recommended a microsurgery to shave a herniated disc that was putting pressure on a spinal nerve root. His HMO finally payed attention. He had the surgery - no more pain. Is fine - no pain. Camping, hauling around 4 grandkids, etc.

When people have a Chiari, there are surgical techniques to relieve the pressure put on the cerebellum, brain stem, spinal cord. Neurosurgeon Michael Rosner ( an incredible, honest, brilliant doctor) thought early on ( like 1990s? ) that a significant number of those dx with CFS/ME actually had some structural problem ( such as Chiari) at the lower skull or upper neck that was blocking CSF/blood flow and/ or putting pressure on the cranial nerves and nerve tissue. Read about this . What a story. I was invited, and attended, an early conference on this whole topic - sponsored by the NFRA in Salem, Oregon. There were rheumatologists and neurosurgeons there debating this, plus a few regular old patients like me. I am so sorry that the debate seems to have ended?

The neurosurgeons discussed the fact that there is no one Chiari surgery. That often patients have differing and complex structural issues that may not be totally apparent on MRI. Plus, the comments of Dr. Diana Driscoll at this site made me appreciate that viruses can cause alterations of CSF in that critical lower skull/ brain area. Read at the Conquer Chiari site - by Rick Labuda.

So, Loki, this is so complex. Another good read - The Fibromyalgia Syndrome : A Clinical Case Definition for Practitioners, edited by I. Jon Russelll, MD, PhD. Dr. Russell is now retired, but he is another brilliant doc - a rheumatologist. There is a chapter by a Canadian research group (Jain et al.) that studied 2,000 FM people. They comment that scoliosis, short leg, and incompetence of the sacroiliac ligaments ( stabilize / hold pelvis) is common. They comment, "One study suggests approximately 75% of ME/CFS also meet the criteria for FMS, but there is a much lower rate of FMS patients who meet the criteria for ME/CFS. Some FM syndrome patients can developevME/CFS and vice versa." Another wonderful and brilliant neurosurgeon was on this Canadian team - Daniel Heffez.

After all of this, and more, I just don't have any answers - yet.

 

[loki]

Hm, nobody seems to have the courage to do such an operation? FM CFS seem to have different root causes like bone that's putting pressure on nerves or CSF flow, viruses, inflammations ... Does nobody have a clear solution for your problem? Does your MRIs show any abnormalities?!

 

[Merida]

I spoke to 3 FM/CFS people who had the big surgery -at the skull base. They all got well to very well. One person said that about her only symptom left was pain behind the eyes when shoveling snow. However, If I am remembering correctly even the classic Chiari dx people do not always have a successful outcome. The people with Ehlers-Danlos may have more difficulty than most. I am not up to date on these statistics, but they would be on line somewhere.
The neurosurgical community/ medical groups basically 'attacked' and tried to discredit the few neurosurgeons who were willing to dx Chiari O and offer these patients surgery. So, I think the whole topic is very controversial still.
My brain/ cervical MRIs showed : small posterior fossa ( space at base of brain), short clivus ( these 2 features are common/typical for Chiari patients). But no true Chiari. However, my cerebellum is sitting low and crowded. Most important , my CINE MRI ( special MRI that shows spinal fluid flow) was very abnormal - with blocked flow in some areas and spinal fluid jets in other areas. I did this with a neurosurgeon expert. All of the neurologists I have seen have no clue about this stuff. Some people have stenosis or narrowing of the neck spinal canal, and I understand that symptoms are very similar.

Also, I had a urodynamic study to see how my bladder was functioning. I was dx with lower motor neuron bladder, typical of tethered spinal cord patients. It is now appreciated that sometimes Chiari and related problems at the upper neck/ lower brain can actually be caused by a spinal cord ( or dura?) that is too tight and always pulling downward on the brain and spinal cord. So, this is very complex. I am working with alternative people ( acupuncture/qigong/ traditional osteopath) as I think there is not enough known to go ahead with a big surgery that could make me worse. Remember: before I got to the neurosurgeon consults, I was dx as a typical fibromyalgia/ CFS/ME person.