Chiari Malformation type 1

I was told by a Nuero-Optimologist that when your brain swells it pinches off your putulatary gland. Which causes the headaches and double vision.
Sorry about the spelling but hopefully that explains a little

All I keep getting told is "your brain isn't falling out enough to worry about it". I now have seizures I can't work, I can't drive and I have many other problems and I am only 46

So sorry to hear that you have been struggling. Have you been able to locate a doctor who specializes in Chiari Malformation? I know that there are some around the country, though you may have to do some digging and travel to find one. I have found that a specialist makes all the difference.

Hello, my name is David and I went through surgery on Jan the 21st to relieve pressure on the cerebellum.....the doctors call it Chairi malformation decompression. I know that the symptoms I had before wasn't going to clear up with this surgery, but I can't tell the new from the old....numbness, dizzy and lightheaded, weird headaches, ext. Can someone who went through this surgery help me before I make a complete idiot by going to the hospital, or calling the doctor for my complaints.
Thanks

Hi @david33 and welcome to Connect!

I moved your message to this discussion thread in the Brain & Nervous System group where others are talking about Chiari Malformation. Here you'll meet @trouse @donnak69 @cnoethe @staceybeyer and others.

There are few older discussion threads that you can also read. Simply put Chiari Malformation into the search field.

Personally, I think talking to your doctor would be a good idea. It would be helpful for that conversation if you could clearly describe your current symptoms and if there is any difference between before surgery and after surgery - no matter how slight the difference might be. Have you noticed any difference at all?

I wanted to let everyone with the diagnosis of Chiari to consider having the surgery but make sure your neurosurgeon performs a lot of them. I had an excellent surgeon and he performed surgery on me and I am a almost 60 years old. My headaches are not nearly as bad as pre-surgery. My surgery was two weeks ago. I would like to know if there is anyone out there that has had the surgery and can tell me if their headaches subsided and if the back of your head will ever feel normal. Thanks, Marion

Welcome @maidmarion.
I'm glad that you were able to post a message.
Two weeks is not a very long time post surgery. I suspect you will experience more healing yet, but I've never had this procedure done. @david33 recently went through the surgery and may have more to add. I'm tagging @alicein_wonderland on this message to bring her into the discussion as well.

Thank you Colleen. I am glad I found a place where I can talk to others and know that I am not alone. <br />
Marion<br />
<br />

i was diagnosed with Chairi Malformation in 2003, i had surgery soon after being diagnosed. It saved my life, as i was getting worse and worse as the days passed. It is now 13 years later, I don't regret having the surgery. My opinion is if you are having many issues to try and talk with a good surgeon and see what it is that they can possibly do for you. I know that they can offer some type of steroid to help with the swelling until you decide to do the surgery. You always have options, just remember that.

I just went and seen a neurologist this morning. I have a 10 mm and a 6 mm herniation and he said he didn't feel it was significant and no big deal. He said I obviously know more than him and was very rude. I am 42 and the chiari started impacting my heart a year ago. I was able to live with all the other symptoms till it started at my heart. I am now in the process of finding a specialist at mayo in Rochester Mn. I would like to do more of a physical therapy type of treatment.