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A little off topic... Arnold Chiari Malformation



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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

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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?

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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

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

Edited by lexiemia

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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.

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      On day 4 of the 2 week liquid pre-op diet. Surgery scheduled for June 11th.
      Soooo I am coming to a realization
      of something and I'm not sure what to do about it. For years the only thing I've enjoyed is eating. We rarely do anything or go anywhere and if we do it always includes food. Family comes over? Big family dinner! Go camping? Food! Take a short ride or trip? Food! Holiday? Food! Go out of town for a Dr appointment? Food! When we go to a new town we don't look for any attractions, we look for restaurants we haven't been to. Heck, I look forward to getting off work because that means it's almost supper time. Now that I'm drinking these pre-op shakes for breakfast, lunch, and supper I have nothing to look forward to.  And once I have surgery on June 11th it'll be more of the same shakes. Even after pureed stage, soft food stage, and finally regular food stage, it's going to be a drastic change for the rest of my life. I'm giving up the one thing that really brings me joy. Eating. How do you cope with that? What do you do to fill that void? Wow. Now I'm sad.
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      1. LeighaTR

        I hope your surgery on Wednesday goes well. You will be able to do all sorts of new things as you find your new normal after surgery. I don't know this from experience yet, but I am seeing a lot of positive things from people who have had it done. Best of luck!

    • Alisa_S

      On day 4 of the 2 week liquid pre-op diet. Surgery scheduled for June 11th.
      Soooo I am coming to a realization
      of something and I'm not sure what to do about it. For years the only thing I've enjoyed is eating. We rarely do anything or go anywhere and if we do it always includes food. Family comes over? Big family dinner! Go camping? Food! Take a short ride or trip? Food! Holiday? Food! Go out of town for a Dr appointment? Food! When we go to a new town we don't look for any attractions, we look for restaurants we haven't been to. Heck, I look forward to getting off work because that means it's almost supper time. Now that I'm drinking these pre-op shakes for breakfast, lunch, and supper I have nothing to look forward to.  And once I have surgery on June 11th it'll be more of the same shakes. Even after pureed stage, soft food stage, and finally regular food stage, it's going to be a drastic change for the rest of my life. I'm giving up the one thing that really brings me joy. Eating. How do you cope with that? What do you do to fill that void? Wow. Now I'm sad.
      · 1 reply
      1. summerseeker

        Life as a big person had limited my life to what I knew I could manage to do each day. That was eat. I hadn't anything else to look forward to. So my eating choices were the best I could dream up. I planned the cooking in managable lots in my head and filled my day with and around it.

        Now I have a whole new big, bigger, biggest, best days ever. I am out there with those skinny people doing stuff i could never have dreamt of. Food is now an after thought. It doesn't consume my day. I still enjoy the good home cooked food but I eat smaller portions. I leave food on my plate when I am full. I can no longer hear my mother's voice saying eat it all up, ther are starving children in Africa who would want that!

        I still cook for family feasts, I love cooking. I still do holidays but I have changed from the All inclusive drinking and eating everything everyday kind to Self catering accommodation. This gives me the choice of cooking or eating out as I choose. I rarely drink anymore as I usually travel alone now and I feel I need to keep aware of my surroundings.

        I don't know at what point my life expanded, was it when I lost 100 pounds? Was it when I left my walking stick at home ? Was it when I said yes to an outing instead of finding an excuse to stay home ? i look back at my last five years and wonder how loosing weight has made such a difference. Be ready to amaze yourself.

        BTW, the liquid diet sucks, one more day and you are over the worst. You can do it.

    • CaseyP1011

      Officially here for a long time, not just a good time💪
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