I have Arnold Chiari I and have been getting worse. Now I am getting numbness in my hands and severe pain in my neck. I don't think my neuroloist is taking this very serious. he just ups my pill count. I have been getting a lot of stiffness in my legs especially in my knees. and my headaches are getting worse. They said i am only 7-8mm. I don't know if this makes a difference but I am concerned. Who should I talk to ? What do i do?
My Son saw a specialist in Chiari's for a mild chiari (type1) and he didn't dismiss any symptoms due to his being mild or a specific # of mm's. He went by specific symptoms and asking in detail about them. With the questions he asked and my Son's answers, the Specialist felt that the symptoms he was having was not due to the chiari, but this told us that even with one that is considered mild, one's symptoms can be from a chiari and need to be looked into no matter the # mm. We got the name of this Specialist from a website on chiari malformation. The Specialist was Dr Ghassan K Bejjani in Pittsburgh PA, 15232
Phone: 412-623-6910- link to webpage- http://www.neurosurgery-web.com/
He was very nice and seemed very competent. Plus he was on this chiari website's patient's recommended doctors. The website for the chiari info and where you can find a list of patient recommended doctors for chiari is: http://www.wacma.com/
Hope this is helpful to you.
My son had surgery for Chiari last year. The amt of tonsillar herniation isn't all there is to Chiari. The amount of crowding in that area and blockage of spinal fluid flow are other important factors. Our son had almost complete blockage of spinal fluid with only a 5mm herniation. The doctor that we see is one of the top Chiari doctors in the country and he is wonderful! Dr Oro in Aurora Colorado.
Have you had a flow study? That is the test that can show how much blockage there is.
Have you had a spinal mri to check for a cord syrynx? They are seen with Chiari sometimes and can cause the numbness etc symptoms in extremities.
My son had 4 brain MRIs here in our town before a radiologist saw the tonsillar "dropage" and noted it. His life has been so different since the brain surgery. He had lived with pain and bad headaches almost every day of his life until the surgery. What we learned through all this is to have a LEAST 2 different specialists and or radiologists read the scans and also evaluate them. Many regular neurologists are not familiar with Chiari we have learned through all this. Go to a noted Chiari doctor. It is well worth it if you can at all swing it as you will save a lot of time and pain. I wish we had known years ago what was going on with our son , so he could have had it fixed earlier and had a much different life. Some of the symptoms with chiari (especially if you have a syrynx) are not reversible if they progress too far, even if you have surgery.
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