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More Chiari...


Monstrosity
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Late spring/early fall I began to toss the idea around of Chiari Malformation. I contacted my Neurologist and had him look at an old film and he said they saw a 3mm drop in my cerebral tonsils but it was normal. I began reading a lot of mixed things about the drop. At that point I contacted NY Chiari institute and they had me fill out a questionare along with sending them my films. They called back and said when do you want to come in for your apt. I freaked out at that point and told them I would call them back. I began researching local Neuro Surgeons to see. Neurologists seem to be clueless on Chiari unless they see a huge drop. Anyways I came up with Viollette Racinos at the Cleveland Clinic and Dr. Gardner at UPMC in Pittsburgh. Dr. Gardner wanted an updated MRI. He also wanted it to be a cineflow. The MRI showed good flow but a drop of 4mm.

Dr. Garnders office saw me in within a few weeks (late August). He felt my drop was within normal range. At that I left his office both relieved and discouraged. I thought I might have found the root to my autonomic dysfunction, flip sideI was not going to have a horrific surgery on my skull.

This past Tuesday I went and met Dr. Racinos at Cleveland. She was very nice and seemed to care. I expected her to say no Chiari is not your issue and send me on my way. This was not the case. She said I'm borderline Chiari. She said that treatment (surgery) is very sketchy with individuals such as myself with a slight drop. She ordered a full spine MRI and I will have that on the 29 .

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Maybe you will get some more answers. You are gathering data at this point and you will have to decide when all the info is there. I know you've researched it a whole lot and talked to many people who have had the surgery. So, you will have to decide if it's worth the small chance of the surgery helping or not. You have a chance of it helping and also a chance of it not. Hopefully, if you do the surgery there won't be worse things that happen - rather then better. I know it's hard to be in limbo and not knowing what direction to go. Every doc will have a different "opinion" on the significance of the findings. But, in the end ----it will be up to you to decide. Make sure you've looked at ALL the known possible indications for POTS and that you've ruled out all other things first. There are so many things that can be ruled in/or out. You know I have a slight drop too ---but, most of the docs are not even considering this as an issue.

Issie

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I've heard of a girl who supposedly had a slight drop but could barely walk, and it turned out once they got in there and opened her cranium, surgery in N.Y., her spine was malformed at the top and pressing into her brain with this boney prominence, so I suppose it would be a quality of life issue, but ultimately, like Issie said, you are the one to make the final decision. I'll pray that you make the correct one, and that you are satisfied with what choice you make.

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Hi,

I have been diagnosed with Chiari as well. I actually had one neurosurgeon tell me I needed surgery ASAP. I was very scared, and got a second opinion and more tests. The second opinion said no surgery, so I needed a tiebreaker. I saw another neurosurgeon, a very prominent one who was recommended to me and he said Absolutely no surgery. I am glad I sought more advice... I was so desperate for answers, but brain surgery is serious stuff... I know exactly how you feel Monstrosity. I am sure you'll make the best decision for yourself. Good luck.

Angela

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