Suzie said that she has a spontaneous CSF leak, also known as intracranial hypotension. Basically, the fluid that is in the spinal cord and that the brain floats in is leaking out. This causes her brain to push up against her skull, which causes excruciating headaches. The only relief is laying down flat which you cant do forever. Its a very specific type of headache... not like a migraine or a sinus headache. It literally feels like a helmet of lightning, and her head gets very hot. There isn't a hole big enough to go in and sew up, or anything like that... it's a general area that's leaking due to a connective tissue disorder.
She was hospitalized 4 years ago for this, and since then, has been dealing with it by having a lot of caffeine (it stimulates the production of the fluid shes leaking), and laying down flat for days at a time when she has that type of headache. If she continues to be upright when the fluid isn't there it could easily cause brain damage.
There is a procedure, called a blood patch, that is used to fix this type of leak after a lumbar puncture or traumatic event that causes a tear in the spinal cord.
A blood patch is where they take some blood from your arm and inject it in a specific place in your spinal cord. The CSF fluid runs up and down the very center of the spinal cord. Outside that, there is a layer, and outside that there is another layer. The blood goes in-between those two layers to make almost a blanket or an artificial scab to keep the CSF fluid where it is supposed to be. They always do this procedure low down in the spinal cord, where there aren't many important other things. However, the location where Suzie need the procedure done is high up in her neck. If the doctor isn't extremely careful, she could end up paralyzed or worse. So... They are trying to get the only doctor who has ever done this before (which was on her, four years ago) scheduled to do the procedure on Monday, under fluroscopy (kind of like xray), to best avoid any further complications.
She has been off work for over a month and has missed 2 weeks of work so far because of hospital stays. Recently she was transferred to OHSU up in Portland to be seen by the same doctor( and only doctor) able to do the blood patch on her. As you can imagine, this would be very overwhelming and she handles it with grace. Aside from being a great human being, she is a single mom of 2 boys. Cameron is 8 and Trevor is 6. She did say that her ex husband is amazing and has helped out with Cameron and Trevor while she has been dealing with this.
Needless to say, any help, big or small, will make an impact on this situation. Suzie didn't ask for this but I truly wanted to help. She has so many friends on facebook and if we pull together I feel confident in our ability to help. We definitely cant fix what is wrong, but each person can do a little to make a difference
- Galen Loram
- Allison Akin
- Pete Thomas
- Ben Brock
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