Chiari Online Support Group

Getting Into a Doctor

Hey guys I have CTs and MRIs that are going back and forth as far as my diagnosis of Chiari. My body is going crazy with all my symptoms. Dizziness, nausea, balance issues, ringing in my ears, pain in the back of my head, major headaches, numb arms hands feet and legs, muscle weakness, memory problems, cognitive issues, swallowing issues, and after a while of talking my voice goes away. I have had all these symptoms off and on plus more for many years now. All the neurologist I have been seeing don’t believe it is Chiari because my decent is not that bad, it is only a 4.
I have said all of that to ask this. Do any of you think one of the specialty centers would see me even though my decent is not that far down? I know they are all about surgery, I am just tired of this evil controlling my life.

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Time to push to see a neurosurgeon. If you already have and were dismissed, time for a follow-up or see a new one. My last neurologist (I saw 5) was convinced that my Chiari (11 mm) was not contributing to my symptoms (all that you listed and more as I am sure that you have too!). I badgered him into sending me on to a neurosurgeon who then performed surgery. I repeat again that neurologists are not able to deal with Chiari. Pressure on the brain, spinal cord and structures within the foramen magnum does not seem to go away on its own!

Neurosurgeon

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Gabby I am so glad you are on this support group as you are one of the main ones that responds to people. I hope throughout my journey I too will have good advice to carry on to others. I worked all day today finding a neurosurgeon on my insurance so I will call him first thing in the morning. This whole thing just makes my depression worse oh yeah which is another symptom :crazy_face:

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2 posts were split to a new topic: All these symptoms from only 4 mm?

Posted recently by Nanek:


So I went to neurosurgeon that specializes in Chiari at the beginning of June. He wanted all new MRIs so down the road I went for those. Went directly back to his office to receive results and he told me that my tonsils were low lying but nothing that warranted surgery at this point. Received actual reading of MRI from radiologist and it shows that I am at 4mm. Really all my symptoms and 4mm but I don’t warrant surgery. My friend told me to get another opinion because it wasn’t his brain falling out of his head. I am going crazy with these doctors feeling it has to be 5mm or lower to cause any problems. Wish one of them could walk less than a mile in my shoes and they would never feel that way again. I was just told by the above neurosurgeon that visited with me for less than 5 minutes to go to a pain doctor. I am so frustrated!!!


ModSupport

Frustrated? I’m sure you are, and probably just a bit panicky as well. I’m sorry you’re going through this.

Your post is appearing under the Subject Line “Getting Into a Doctor”, and really it’s become all about your symptoms and your MRI findings. I’m afraid you may not get very many responses to this.

Do you mind if we move this post and give it a new subject line, maybe something like “All this suffering from only 4mm?”

Seenie from ModSupport