Neurologist appointment

Posted , 3 users are following.

I was diagnosed with type 1 Chiari Malformation about 18 months afo after having a migraine for over a week.

I got my MRI scan through pretty quick and was told I would then get my neurology appointment. I then had to wait for just over a year for my appointment to come through. (delayed due to Covid backlog).

when I finally had my appointment over the phone. I was told that the length of how much the cerebellum drops isn't too big so there is nothing to worry about. I had mentioned that over the past year I've had some bad migraine spells plus getting dizzy amongst other symptoms, they then said that they would give me another MRI to quote 'reassure me', but haven't heard anything since which is not 3 months ago.

Am I over thinking, is this normal or would it be worth me getting a second opinion and also speaking with my GP?

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  • Edited

    Hello, similar situation. After experiencing ongoing morning headaches I had a CT Scan in Nov 2021 at which time the Chiari I was identified (5mm). Answered a lot of questions as I checked off a lot of the basic Chiari symptoms for some time including sleep apnea (diagnosed at the same time) and the various triggers (sneezing, coughing, exertion, etc). My "triggering" event was blowing my nose one day back in 2020 that set off an exploding pain in my head. Sleep apnea treatment helped for some time but over time my symptoms have progressed into all times of the day and more recently have caused me to have to change some of what and how I do things. I basically need to take ibuprofen in the morning and afternoon to get through the day but more recently have issues at night as well. I would prefer to stay off of meds and away from surgery which appears to have mixed results from what I have seen. Recently had an MRI and met with the assistant to a neurosurgeon after which they said I do not qualify for their services which was not unexpected and not what I want was just looking for some direction. Meeting soon with a doctor in Neurology. Will see if this doctor is familiar with this condition and relevant options and if not will look for another and find one that is. Feel that I am still in the initial phases of this and not nearly as bad as many other cases but concerned about the progression.

    To answer your question, I believe you need to push to talk to doctors that have experience with this condition and are aligned with your beliefs. Things only happen if you make them happen. Yes, you should get a second opinion and follow up with your GP. Fortunately my primary physician is great, listens and identified this and believed strongly this was the cause even at the start when I had doubts. Just not her area of expertise.

    Hope this helps.

    • Posted

      if you happen to come across the Chiari Institute in New York just be careful they will cut anybody and suggest it for everyone. The place seems to just be a money grab and when you read about the doctor it's quite scary. I went to one doctor called the "brain and spine Institute" they never heard of it. I had another doctor who thought I was talking about the Chiari stomach issue. There are only a few doctors in this country that their expertise is Chiari one is in North Carolina, one is in Florida and I think the Mayo Clinic has one. There's not many options decompression (which is a 'treatment' sometimes makes it worse). or different medications to handle your symptoms. In 10 years mine has gone from 5mm to 9mm so it does progress over time. You might want to have an MRI every few years just to see if it's progressed The MRI that diagnoses it the best is an upright MRI which again only a few places do I had to go to NY an fight insurance to get it. just try to make a mental note of what your triggers are and always have a ice bag( I have disposable ones everywhere) and a bottle of Zofran on hand.

  • Posted

    Absolutely get a second if not a third opinion. When I first started I was called crazy, typical woman hypochondriac, you look fine there couldn't be anything wrong with you. You need to find a doctor that goes by symptoms and not the length of the herniation. I have been to Boston, New York, Rhode Island to see doctors.

    My herniation was 5 mm 10 years later it is at 9 mm. my doctor's keep trying to recommend decompression which at 52 I absolutely refuse. It is a temporary Band-Aid sup, not a cure along with the 50% chance that they will have to go back in the next day due to a dura leak then you have to worry about infections and most of the time your symptoms don't go away if not become worse.

    now online you can find a lot of answers before this was not talked about Unfortunately unless you are going to have decompression you have to learn to live your life around it figure out what your triggers are the main one being anything involving vagal maneuver, bending over, going to the bathroom, standing up too quickly, coughing, sneezing. For me my major trigger is driving. My cerebellum is in full contact with my skull making the cerebral spinal fluid flow hard causing it to back up, I swear that's what's causing the pressure.

    frustrating, depressing, it's ruined my life. as friends don't like to stick around sick people although I don't consider myself sick. You are starting what is going to be a long journey. Do as much reading as you can that way when the doctors talk to you you understand and they don't talk down to you. Remember they work for you, you pay them. Do not do anything that you do not feel comfortable with. There are a few medications that work different for everyone, to help w symptoms. Start with them and work your way down the list. Good luck, best wishes.

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