New to Cm1 but not new to symptoms

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i am so glad to have found a forum that seems fairly active. I recently had MRI done and am told I have chiari malformation type 1. so I have been scheduled to see a neurologist in October they are looking at some other things on my MRi that might be MS.

my family doctor feels I need to be seen sooner so I am waiting to be scheduled with a Neurosurgeon at uams. I am completely relieved to have a name to what might be causing all my symptoms, but am freaking out at the possibility of needing brain surgery. I have a long complicated health history and literally take one day at a time.

my biggest question now is could my diagnosis of Fibromyalgia years ago been CM really being the problem, not found until MRI? I went for the test because of headaches/migraine/tinnitus.

what can I expect at my neurosurgeon appointment. so now I feel like I have some answers to years of questions and at the same time it has left me with so many more questions.

having a rough day today didnt sleep good last night so my pain is bad as is my brain fog. I usually get stuff done, but today I am taking it easy and just keeping an eye on our chickens. some days thats all I can do. I find comfort in reading post and having the company of my dogs.

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6 Replies

  • Posted

    Mine was measured at 8.5 MM. I have a whole list of systems from tingling in hands and feet to balance issues to fatigue and blurry vision at times. I even recently was diagnosed with asthma and a couple of years ago will be interesting to see what the neurosurgeon has to say. that along with thyroid issues and ITP could be my missing piece as to why I just feel miserable so much of the time.

    i do take care of myself.

    I was working full time up until a year ago it just got to much. I came home so worn out with daily migraines and arm, neck, and shoulder pain. I was crabby a lot of the time. I was a receptionist at a high stress clinic. I was fired and at the time I was upset but after I got over the shock I was so glad to be able to focus on my needs for a while and if I can maybe I will try a part time job, but right now I have bigger things to focus on and fortunately my hubby agrees. I forgot what normal feels like.

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  • Posted

    i found out i had chiari first then had other pains and found out i have fibromayalgi aswell was told that people who have had trauma or pain end up with fibromayalgi chiari can lie dormant and alot of oeople can have it and have no symptoms therefore nothing will be done but some people will have alot of symptoms the surgeon will decide if ur symptoms is from chiari if so they may operate i have had some surgerys and may need more

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  • Posted

    How do they determine if your symptoms are fibromyalgia or chiari? symptoms are so similar. I have been dealing with this for years. I would think that would be very difficult to do. I have other autoimmune issues and I have read that when you have one autoimmune disease you are likely to deal with others. I know or i have read chiari malformation is considered an autoimmune disease. I will feel better when I get my neurosurgeon appointment and can talk to someone about all this. my family doctor really didn't know more than I did from doing a little research on chiari malformation. it will be a journey for getting this figured out I am no stranger to that. what kind of test might I expect with this appointment. I am sure he will have things he wants to review. its litteraly nerve wracking the unknown.

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  • Posted

    In a nutshell: Had the 5 hour traumatic brain surgery which gave me 4 weeks of false hope. Then had 45 minute Filum Terminale Dissectum surgery and it got me out of bed after three years with my life mostly back. Do your research of the Filum surgery. Decompression surgery does not addres the cause of the Chiari, but is meant to pause some symptoms...most see their symptoms come back. Fibromyalgia, Chronic Fatigue Syndrome and Chiari are more readily being seen as from the same cause: herniated hindbrain tonsils block CSF flow and also compressing cranial nerves. Find a Chiari specialist and not just a hospital staff neurosurgeon. I saw not less than 7 neurosurgeons (one did the brain decompression and one did the Filum surgery). Education is power: do your research on Filum Terminale Dissecutum. Pray. Do not give up. Do not settle. My family/friends wanted me to "settle" after the failed decompression surgery, but through prayer, God led me to the Filum surgery. And now I am spreading the word: There is an alternative to brain surgery! Godspeed!

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