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[Guest guest]

Oh I am so frustrated. I just wrote this long post and lost it. Oh well it

teaches me to start saving my work. Well here goes again.

I have a history of headaches in the last several years, however, about a year

ago after being on vacation, they came and never left. I went through 2

neurologists with conflicting advice and 2 surgeons before one said of course

you need this surgery. You should have had it a long time ago. Even thought I

saw these 4 different experts they all agreed I had a 11 mm herniation labelled

chiari. One neurologist recommended PT which did not help, but aggravated my

headaches, was told I had rebound headaches and no caffeine, no over the counter

meds, watch my posture. Name it, I did all I was told. Still in pain.

I had the decompression surgery with a synthetic patch last December. I

recovered from the surgery fine, however,had minimal relief from my surgery.

Then the headaches came back with a vengence. I had a repeat mri and my surgeon

said I was a textbook case and all looked good. Was told to keep taking muscle

relaxers and hold my head back, work on my posture. I then went to see a

neurologist in my area that specialized in memory/alzheimer's. Most of my dr's

said he was not their first choice, but he had wonderful credentials and mabe he

could lead me down the right path. Well luckily this neurologist had attended a

training session by a neuroradiologist in my state. The new neurologist sent my

information to her hospital and I went.

Wow. The neuroradiologist was awesome! She spent a long time explaining

everything to me. She did a CT of my spine then checked the pressure of my

spinal fluid only to find it was low! She then put dye in my CSF (spinal fluid)

and found I had about 10 leaks. She used my own blood to perform blood patches

in my CSF, individual needles. She used videoflouroscopy to guide the needles.

I had to be on bedrest Wed. through Saturday then very slowly increase my

activity. I still have a headache although it fluctuates. The dr.(who calls or

emails me daily and adjusts my meds) says this is because I am on meds to keep

my pressure low so I don't blow my patches.

My body is so use to producing extra fluid to keep up with the leaks. I am weak

also because of Diamox which makes my fingers, lips and feet tingle. Diamox is

temporary. I know this is long but my point is before you have any invasive

procedure for chiari, have your CHF pressure checked first. I feel sure I am on

the right path now. I am not yet pain free, but my dr says all of my symptoms

now are typical for the patch/meds. I will keep posting updates. By the way I

asked the dr what could have caused the leaks and she said sometimes they are

spontaneous, but she feels like mine is likely from a high g-force ride I rode

in an Orlando park. I will keep posting updates hopefully with good news. If I

can help anyone please do not hesitate to email me. The neuroradiologist said

there are not many dr.'s in the country that she knows of that is using this

treatment of a guided blood patch and meds like she is. Bonnie