A little off topic... Arnold Chiari Malformation

[MyZentrails 0]

Hi there, I'm new to these forums and will be having my surgery (tentatively) on June 23rd. My story is a little different... I'm losing weight in order to be eligible for brain surgery. I'm wondering if there is anyone else in the world like me, because it's kind of lonely over here! I had no luck on the Chiari support boards - maybe one or two of you have similar stories to mine?

Thanks!
Katrina

[lexiemia 78]

My daughter has an Arnold Chiri malformation. She has constant headaches and we are thinking she may need surgery at some point. She had her baby last June and put on quite a bit of weight. She has been trying to lose it and has done well as of lately. Are you having the window surgery?

[MyZentrails 0]

Hi Lexie,

For my weight loss surgery I'm having the lap band. As far as Chiari goes, I've been unable to work or drive for three years, I'm in a wheelchair when I leave the house because I'm unable to stand up for more than a minute or two without fainting, and I have the classic Chiari headaches daily (along with a huuuuge list of other symptoms). I've sent my medical records to neurosurgeons across the country but I've been rejected by all of them because of my weight. The funny thing is, I don't have any other comorbidities like diabetes, high blood pressure, or any of that - other than the Chiari and being overweight, I'm healthy. I'm 375 lbs as of my 6 week pre-op appointment. Have lost a bit in the couple of weeks I've been on the pre-op diet though!

I think what I'm worried about is going through the weight loss surgery while still having my Chiari malformation. I can't lie flat - the pressure builds in my head until I have an excruciating headache. I know I'll be out for the surgery but can I ask them to prop me up before they bring me out of anasthesia to reduce the pain before I wake up? Stuff like that. Just wondering if anyone else has had to bring this up with their surgeon...

Thanks for your response!

Katrina

[lexiemia 78]

There is actually a chairi clinic in Kentucky and I think in Ohio. Google it and you will find their website.

Edited May 24, 2015 by lexiemia

[MyZentrails 0]

Yeah, I've sent my MRIs to every neurosurgeon locally, the Chiari clinics in Colorado, New York and the one in the Midwest, neurosurgeons in Chicago, Seattle, Boston, Florida, California... Rejected by all of them. They all brought up my weight, but only a handful would say that was exactly why they were rejecting me. Not to go into too much personal detail but emotionally I'm done trying neurosurgeons for now. Three years is a long time to put your hope in a group of people who refuse to help you while your life has ground to a halt.