I got an email, late last night, from Dr B. in New York. The medical review board at The Chiari Institute has approved my surgery. I have to do two things before we can schedule. They require a psych review and they want another spinal tap to make sure that there is no lingering infection. Remember, I had some kind of infection on 4-29-2010? The dr's in NY thought that maybe it could have been fungal? So they want to make sure that is all gone before opening up the dura mater. So let me give you a quick and dirty on the surgery that I will have. They will be doing a release of the connective tissue at the base of the spinal cord. They will cut externally approx 2 inches. Internally, the dura mater will be cut approx 1 cm. This is much improved over just two short years ago. My surgery will be approx 2.5 hours. When my sister had the surgery, it was about 8 hours long, her external incision was approx 6 inches and internal incision was about 2 inches. Boy, what a change in two years! Imagine in another two years! I will be in a medically induced coma for 24 hours, be in the ICU for approx 3 days, and on the regular medical ward for another few days. Then I will fly home go directly into Mountain Valley Rehab. I will be there as long as I am improving daily. So, one-two weeks?
I have a call into my neurologist for the spinal tap and have an appointment for a psychologist workup in the AM. So, as soon as I have both completed, I will call to have my surgery scheduled. Woo Hoo! We are really on the fast track now!
Last night I could not sleep so I went online to search more on the diagnosis of Ehlers-Danlos Syndrome. I was able to find that the Mayo Clinic in the Valley has specialists in EDS. So, I requested an appointment. Hopefully, I can get in to see them soon for braces to keep my knees and fingers from dislocating. That will be a great relief from pain. Another upside, is that the doctors with treat my pain with this diagnosis! Yay! Sometimes it is nice to have answers to a long life of pain. I read a shocking statistic last night. 70% of suicide victims are due to chronic pain. That is a major problem. Please, if you are a healthcare provider, a nurse, or in any position to help, please believe people when they say they are in pain. When I would say I hurt, It was a 10/10. I never complained because I was always told I was just tired, I was a busy mother, I just needed to rest, I was anxious, the mind is a powerful thing, etc....So I NEVER SAID ANYTHING. I did not want the stigma of being CRAZY!
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