I am new to all of this. I would like to hear main symptoms Chiari folks have. I also am wondering how vital it is to consider surgery. Does it tend to worsen if left alone? My neurosurgeon couldn't answer that because he says he doesn't follow Chiari patients - that he fixes the problem through surgery. How often should a person with Chiari see a doctor for follow up if no surgery has been performed. I have Chiari type I 15 mm below the line with tonsillar herniation. (I am quoting from the report from MRI)
Thank you for any input. I also need to find someone specializing in this in the Long Beach, CA area.
Mje, yes, we all have a different mix of symptoms. You should be evaluated by a true Chiari specialist so you have the full, physiologic picture of your situation, this does not mean you have to have the surgery. Most of us have the option to wait until surgery is something we want, but a few of us need the surgery where waiting becomes very dangerous. You need to know what category you fall into. you also need to know if you have:
sleep apnea
Ehlers Danlos Syndrome- prevalent in Chiari patients and cause cranio cervical instability. For more info in this :CSFinfo.org, go to videos, go to metropolitan area, go to EDS and cranio cervical instability or the complex Chiari patient)
Educate yourself as much as you so you can be your own advocate and also recognize when an NS is truly specialized or only marginally informed. A common problem we all face is a limited pool of professionals who understand Chiari beyond the three paragraph explaination they learned in med school. Chiari education has come a long way we just have to find the docs who have kept up.
Be open to traveling to see the right NS if at all possible.
I would say you need to find a new NS. I went to three over the last three years before I was comfortable with the one I choose. She brought up all four of my MRI's; one being a CINE - everyone should have a flow study to see if anything is slower or not being nourished at all. I also had a MRA. which gives a view of the arteries. Your surgeon should follow you for a while, at least until they sign off and say you can work again. My Surgeon follows me 2 weeks out, and then 3 months, 6 months, 9 months and finally at a year. She will assign me a NL if I would like one. My CSF was so full that when she put the scalpel in the first time, CSF spewed out and upward, she said she rarely gets hit with CSF - Mine did!.
She said that she didn't even understand how I was functioning with that much pressure build up. Also, the pressure of the CSF had actually worn my sub occipital bone pretty thin.
Please listen to your body and yourself... if you don't feel TOTALLY COMFORTABLE with your NS, look for a new one. This site is a great place for references.. Abby referred you to the symptoms and doctors lists
If you are in Long Beach, CA - I think UCLA is about 40 minutes away and may be worth your time to drive there. UCLA has a "Chiari and Syringomyelia Program"
There are plenty of NS there that would most likely listen to you because said your NS "doesn't follow Chiari patients, he just fixes the problem through surgery."
In my opinion, I'd rather have someone familiar with CM 100% from start to finish.
You have come to a great place to glean info from. I talked to my Neurologist about it first because he discovered it and he said he has very little knowledge of it and wanted me to go see the NS in house. I couldn't wait and a friend got me into Hershey Med Ctr sooner and I also got a 2nd opinion at John Hopkins in Baltimore the very next day.
You know your body better than yourself. We all have just one brain and you want it and your entire life to be trusted to someone who is very knowledgeable about CM and has performed many surgeries; someone you are comfortable with on a personable level as well.
There is a list on one of the blogs of questions to ask your NS about CM.
Stay strong and welcome to this group! You are not alone :-)
you also need to know if you have: