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I just got diagnosed with Chiari Malformation type 1. I get severe headaches if I do anything strenuous. Liked to know someone with my syptoms and how you are all handling it?
For more information about Chiari Malformation, go here: http://www.mayoclinic.org/chiari-malformation/. Even though it is rare, Mayo Clinic treats more than 150 people with Chiari every year.
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Do you know how much surgery is done at Jacksonville, FL? That was where I was diagnosed last year with a Chiari 1, 6 mm. I am not sure how many surgeries had been done there, but it is the closest hospital to me here in TN.
My 5 yo son has this. It was diagnosed when he was 4 because he was having headaches. They were getting very severe and relieved with laying down. When the headaches became daily and a nurologist refused to give us medication for them, we scheduled surgery. That was 7 weeks ago. He did really well, even after getting the chemical menegitis. he has only had 5 headaches since we got home from the hospital and they were shorter and less severe than before surgery. We were told it can take 6 months to fully heal from surgery and see how things would heal.
That must have been so hard for you. I have a 5 yr. old grandaughter, and I am glad I have the chiari rather than her. But i am still a big baby when it comes to the surgery. But as my symptoms are increasing more every day, i know that surgery is probably inevitable. I am so glad that your son is doing well!
Hi Naureen, I also have been recently diagnosed with Chiari Marlformation. It is extentended 6 mm, and has caused me numerous problems. I was diagnosed at the Mayo Clinic in Jacksonville, but I was not given a lot of information. I have done extensive research myself and have found that there are a myriad of health problems that can be the result of the Chiari. I have sleep apnea, severe pain in my legs when walking, extreme stiffness in my neck, and recently have started having headaches also when doing any activity during the day. The only relief I seem to have is when I lie on my left side on a special pillow I happened upon. I am hoping to find someone who has had experience with the Jacksonville clinic and chiaris. I hope that you can find the answers you need. I know it is a scary thing. It seems that people have had many different responses to the surgery. I just pray and take one day at a time.
Just posted a discussion asking for info especially post op. Feel free to share the good the bad and the ugly part of recuperation especially what to expect in the pain department. I am considering going to AZ for another opinion and check out surgeons at Mayo. Not sure what city they are located in Tuscon or Phoenix. Have pain will travel !
Texas has Dr Richard Jackson he is a chiari specilist
Hi Naureen I also have Chiari type 1. After being prescribed numerous different medications to alieviate pain I found the taking 3 magnesium pills a day has pretty much eliminated my headaches. I would talk to your doctor before taking it, but it has def helped me.
I want to know this also.
treats Chiari. Does Jacksonville do posterior decompression surgery
Yes, all three Mayo Clinic campuses offer this surgery for chiari malformation in adults. Chiari malformation in children is also treated at the Mayo Clinic location in Rochester, Minn. Click on the button above if you’d like to request an appointment. Thanks.
Neurosurgeons at the Mayo Clinic campus in Jacksonville, FL perform 20-25+ posterior foramen magnum decompression surgeries for chiari malformation each year.
Can you tell me the Doctors names that do the surgery. I saw Reimer but need to wait I am only 6mm. I need a Chiari neuroligst for maintiance
I am 46 years old I was diagnosed in January 2013,with a mass on my brain stem it was 5centimeters I am now legally blind and because we live in such a rural area no one wants to do my surgery the mass is now 9mms I have lost all rom and 100 percent incontinence im scared I am also on ssd so I really need some help I want to go to the mayo clinic in Jacksonville, Florida I live in Florida and Jacksonville is only 3 hrs away some one please help me I am so tired living this way
my sister had a similar circumstance, it was in spinal column at base of brain with a 50 50 chance to do surgery or not and survive doctors went in and successfully removed it, that was 5 yrs ago
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