Hi, yes i did, 3 months ago. I had had a severe cervical compression, which was operated on 12 yr ago. I still thought that i had cfs though, because i frequently felt "flu-ey" & fatigued.
I started declining rapidly about a yr ago, & it finally dawned on me to go back to my NS. He dx'd me with a chiari malformation (that no one else could see, or even imagine could be causing my 30 symptoms).
He said that, of his almost 300 patients, about 1/3 carry a cfs dx; almost half carry a fms dx.
Im down to 1 symptom, nausea, & this occurs when i "overdo". Im able to do more & more before i bring this on myself.
A very good book, which my dr loans out & recommends, is "Contents Under Pressure", by Raphael D'Alonzo. He's a scientist, so he can explain what was going on--e.g., "flu symptoms" are compression on the 9th. cranial nerve--but also documents his struggle with a diagnosis, which we can probably all relate to.
Medhelp has a very knowledgable & informative Chiari malformation community! Tragically, Most docs are decades behind the learning curve re. Chiari.
The first surgery, for spinal compression, was 12 yr ago, but I was never really well. It just never occurred to me to go back to my NS until I declined rapidly last year. This recent surgery is called a posterior fossa decompression. Recovery is bumpy, but it has been steady progress for 3 months.
The cfs & Chiari symptoms are nearly identical. I have known both sets of patients, and the PWCs seem sicker; less able to look for answers or fight back. I would bet my meager SSDI that if a study was done--by the right parties (i.e., not shrinks)--a large % of PWCs would have something definite.
A lot of patients w/Chiari have underlying illnesses, like Ehlers-Danlos (a connective tissue disorder) and/or other skull deformities.
I hate the thought that people might be suffering needlessly. Sometimes changes come from patients & not the medical establishment.
I feel like Ive gotten my life back! (it was not much of a life, since 1996). If I were younger, I would be returning to work.
This is fascinating and while I worry that my body could not handle a surgery with how ill I am, it would be unbelievable to finally feel well again. Thanks so much for your posts and info. A study would be amazing. I know there is something they are missing with CFS and this could very well be it. I have researched so much and nothing has helped, so I am thinking I need to find a Chiari doctor. Best wishes for good health for you as well.
Oh, sorry; not I-- one (1) Chiari member completed the 8k. We were all so happy for her.
Many of us are pretty disabled though, mostly due to comorbid conditions, and the fact that Chiari was discovered so late in our lives.
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