Chiari Online Support Group

New and looking for help

I am newly diagnosed 10/5/17 with Chiari 1 at 5mm with scattered hypertensive foci likely representing prominent prevascular csf spaces. I started out going to my doctors because my migraines had worsened to an every day occurrence. She prescribed me medication that didn’t work came back an she upped the medication and I told her about the other symptoms I was experiencing nausea,dizziness,memory loss,loss of concentration,numbness in my fingers and toes, worsening of pain and blacking out when standing and bending over, tinnitus, the feeling of constant pressure in my head, and fatigue. She ordered an MRI and a cbc. My doctor xalles me in less than 24 hours that MRI came back with the chiari and my cbc said my white bloodcell count was low so she was putting in an urgent request to the nuerologist. 3 days later im in the nuerologists office and he completely disregarded my chiari saying that’s just a baby chiari it wouldn’t cause my symptoms. And that if I had symptoms I would know. He upped my migraine medication (that doesn’t work by the way) and told me to come back in 3 months

I am very frustrated I don’t know what to do at this point. My chiari may be small at 5mm but my symptoms are not. I’m considering going to the chiari institute in Michigan even though I live in California. Any advice would be appreciated.

Welcome to the club. By all means look for a second opinion. Keep in mind that a neurologist will prescribe you different medications while a neurosurgeon will want to perform the sub-occipital decompression surgery or not. That is what they have to offer as based on their knowledge pool.

I strongly urge folks to have their MRI’s read by a neurosurgeon as I am not convinced that all neurologists actually look at the MRI images nor know what is significant and what is not in conjunction with a patients symptoms. Relying on radiologist’s reports only to make clinic decisions doesn’t quite cut it. Decide where you want to go with that.

It is important to rule out other concerns that may be the cause of your symptoms so you may need to bear with your doctors while they fumble about. Always be asking what else could be causing these symptoms and what are the symptoms when the contents of the spinal cord at the occipital level are compressed. Research yourself on what all the tissues there are there so that you can ask competent questions.

Given the population density of California, I am sure that you would be able find competent neurologists and neurosurgeons where you are. Neither one of those specialties needs to be a chiari “specialist” to be competent.

Also keep in mind that I tout skilled physical therapy with an emphasis on brain therapy. I personally would have liked to have tried the various things that I have found before I had surgery. Unfortunately, I did not come across them until afterwards. Surgery is not fun and I am all ways game for non-invasive before invasive .

Good luck on your Chiari journey!

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My Chiari was a 5mm as well. The first neurosurgeon dismissed my symptoms as well. I refused to give up and got a second opinion.The second neurosurgeon said differently. All my symptoms where thanks to true chiari! We out weighed my quality of life with the benefit of surgery. Three weeks later I had my surgery and am doing great! Stsy persistent! Go for that second opinion!

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It doesn’t matter the size by the way… I would go get a second third maybe even a forth option because chiari malformation is nothing to mess around with. My chiari is at 12mm and they wanted to do surgery right away but because I have no insurance at this particular moment they don’t want to help me at all I was pushed off and told to call back or come back in when I could afford the next visit or had insurance so if you can take care of yours right now and go get another opinion do it don’t wait till it’s too late and there’s nothing I can do to help I hope the very best for you :star2:

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I have found a neurosurgeon here in Sacramento and I’m going to try and get a second opinion with him. Today I have struggled with pins and needles all through my right arm even now. I am so happy I found this group. I finally feel like I’m not alone in my journey so thank you💜

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Trust me I feel the same way I found this group not to long ago and even though everyday is a struggle its better with people who understand…

I’m not sure where you are in California, but Stanford and UCSF have top pediatric neurosurgery departments. My son had his surgery at Stanford in August. I haven’t heard of the Chiari Institute in Michigan.

I miss quoted sorry it’s The Wisconsin Chiari Center.