Chiari Malformation Type 1

Hi, I am so sorry you are going through this. I have had all of those symptoms. I was diagnosed at 55. I had very bad headaches, vertigo, occasionally couldn't swallow and would throw up several times a week. I saw 3 neurologists, 2 neurosurgeons, 3 physical therapists, a rheumatologist and an ENT dr. I had 4 MRI's and a CT scan. My chiari went from 10mm to 11mm in 8 months time. I did dry needling, anti inflammatories, and everything the physical therapists told me to do. Most of the Drs thought the only thing that would help was decompression surgery. I wasn't going to do that surgery, because after much research, I wasn't convinced it would help. At least not for any length of time. I finally found a Dr. that listened to all of my symptoms. They sent me to Mayo in Rochester and I saw the professor of neurosurgery. He did a MRI of my whole spine and found a large number of perineurial cysts. My chiari was caused by a csf leak. Spinal fluid was leaking into my blood stream from a cyst. He said that most chiaris are caused by an injury or spinal fluid leak and decompression surgery, very often, isn't the answer. He said before any surgery is done, you must find out what caused the chiari. My symptoms have really improved and my csf leak has been plugged. Unfortunately in my case it took so many drs and so long for anyone to look for the cause. My herniation will always be there so I will occasionally still have symptoms. I am hoping you can find some relief. Wishing you the best.

i too have it along with aqueduct stenosis and fluid in brain ventricles raised like urself ive had alot of symptoms and had an etv still having symptoms and now have fibromyaligi so now they trying to put blame there and saying the next surgery is decompression at start i said no now i want help they said that surgery cud make me worse off and still not help my pain so they want to hold off til they have to all docs feom what i read are the same i seen neurologist other month well his student who was concerned the other doc came in n hurt me never asked me anything and said muscular headaches what bot accupuncture and getting physio so know ur pain

The Dr at mayo said it is rare to be born with chiari but for those patients the decompression can be successful. With the majority of CM patients there is another cause for the cerebral herniation. For them there may be a possibility of short term relief from decompression but eventually the symptoms will become worse. Decompression isn't the answer if you don't address the cause. In my case the pressure from the csf leak was pulling my cerebellum down. Without stopping the leak the decompression surgery would have made things much worse. Make sure you try to find out why suddenly your symptoms became so much worse. I was to the point that I would have tried almost anything to relieve my symptoms but am so thankful that I didn't do the advised decompression and tried one more Dr. Again I am so sorry you are going through this. I know for me it was so hard for friends and family to understand too. I have always been a extremely active person so this has been very difficult. Most people have never even heard of CM.

mine is actually belfast and said its more common than u think but ive had to wxplain to most docs lol bcoz i have thre things they tried to eliminate but just as u say they try not to do decompression as it can make u worse i know someone who got it dine and said no difference so i suppose they jmsee people with complications all the time im same as u was very active playing in sports team working and coaching to not being able to do anything even work x hope u stay safe n feel better soon