Chiari Malformation Type 1

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hi i am 30 years old i was diagnosed with CM- 8.5mm about 4 months ago so i am new to all of this. Ive had terrible symptoms such as headaches mainly in the back of my head and it moves down my neck, shoulders and my spine. I get very dizzy with blurred vision an passing out frequently with spells of my body temp rising. I get the ringing in my ears, i have had a hard time swallowing at times, feel weak, if i see bright lights i get light headed, and nausa. I have been on several medications that haven't worked for me and horrible side effects. My neurologist even tried doing a nerve block but even that didn't seem to help. My neurosurgeon says it doesn't seem as bad as what he usually sees so he doesn't want to do surgery. Even tho his office nurse called an said that was my last option he was going to do surgery as long as my neurologist didnt have anything else for me to try and he didn't an told me to move forward with surgery. Now i had a appt with the neurosurgeon today an he doesn't want to do the surgery and wants to try accupuncture....... I feel like i'm being thrown into circles and i feel like my symptoms are worsening...What should i do??????Does anyone have any suggestions or have had the same problem?

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  • Posted

    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.

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    • Posted

      Thank you for replying, i'm very sorry to hear you have had to go through so much before you found some relief. it feels like its getting worse but they don't listen. I keep getting the run around an the 2 doctors do not communicate at all to come up with a solution to the issue. It becomes very aggravating when you are in pain, you finally have a diagnoses but nothing helps.

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    • Posted

      ive had the headaches my whole life they were bad when i was a kid an then it was just every now an then. but about 4 months ago before i was diagnosed my symptoms got really bad an had new symptoms . ive been down ever since.

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    • Posted

      So sorry to hear that. Have they checked you for tethered spinal cord? I suppose the drs said you were born with CM? I hope they did a full spine MRI too. I know how this can be so debilitating.

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    • Posted

      When i was first diagnosed it was with a ct scan they noticed it, then later was sent for a mri for my head only to see how bad it was an i was told 8.5mm. Those are the only scans ive had. I assumed i was born with it, neither doctor has told me otherwise. Just trying me on one medication after another an the nerve block, my neurologist injected lidocaine in the back of my head, neck and shoulders multiple places but it didnt help with my pain.

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  • Posted

    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

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  • Posted

    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.

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  • Posted

    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

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    • Posted

      Thank you i spoke with my insurance just now an the nurse recommended i have a second opinion also. Then gave me a list of surgons in my area to call. Hoping someone will help me...

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