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Chiari Malformation type 1

Brain & Nervous System | Last Active: Apr 6, 2023 | Replies (146)

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@JustinMcClanahan

@kjh2017, @giglgirlnm, and @shane656, welcome to Connect. We are glad to have three new members to this rare discussion and thank you all for sharing a bit about your story with the rest of the members of this group.

I hope @luckygirl will join my welcome and share her experience with decompression surgery with you. @giglgirlnm, would you mind sharing a bit about your experience with decompression surgery with @shane656? @kjh2017, it looks like you also may be able to share your experience with decompression surgery. Did it give your relief?

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Replies to "@kjh2017, @giglgirlnm, and @shane656, welcome to Connect. We are glad to have three new members to..."

Hi, I am sorry to hear that you are having so many symptoms of this horrible condition. I had very successful decompression surgery twelve years ago here in the U.K. I would strongly recommend that you get yourself a really good surgeon, one with experience in this type of work. The only symptom I had was terrible spasms in my chest. It would get so tight that I was rooted to the spot whenever I had one. I was in and out of my doctors surgery for nine years and it was only when I got pain in my thoracic area that my doctor suggested I saw a consultant. This was because by then I had developed Syringomyelia with six syrinx in my spinal cord. This unfortunately has left me with permanent damage and for this pain I take 120x2 pregablin every day. Please get a referral to a consultant who has a lot of experience in this type of surgery before you are left with permenant damage. Straining is very bad for you. You need an urgent MRI scan as this is the only way to see exactly what's going on in your brain. Best of luck.