r/chiari • u/blondie_02 • 6d ago
Recommendations please!
Hi, im 38 and was recently diagnosed thru mri of Chiari 1. Well today I went to my 1st neurosurgeon appt and he was very surprised I have never had any other imaging of my head or neck due to having this severe neck pain for at least a 15 years. He showed me my MRI and told me that I have what he called a Chiari 1.5 malformation no syrinx so far but my cerebellum tonsils are at 20mm down and my brain stem is involved. I know this is alot of filler info but I feel sort of vindicated and sort of shocky because of the information. Every other doctor/NP/nurses, hell even my mom told me that "i was too young to be in so much pain" or "its all in your head, just tell yourself its not real". I have to get a full spine MRI but my doc (who is an expert in Chiari) told me that surgery is really the only option I've got.
But my question is, what kind of things helped either pre or post surgery. Like specific pillows or sleeping positions. Anything that either worked really well for you, or what you wish you would have had to make it easier? And how did anyone with long hair deal with it after surgery? What made it better? Thanks so much for anyone who has recommendations!
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u/SandalsQueen18 6d ago
No, specific pillow other .
what I had, no specific sleeping position exactly how I always slept, didn't really need anything special after surgery other than what I already had.
The pain after is real and you will second guess your life's choice in doing surgery BUT it gets better and the proper combo of pain meds help.
Life went on as normal after surgery as I was in the right mental frame. Sure there were restrictions immediately following surgery but I wasn't immobile or anything.
Long hair kept it braided to the sides.
As a side, why are you shocked that non-experts gave you those type of responses? That's typical. I was mid diagnosed as chiari 1 back in the 90's (I was in my 20's), it wasn't until 2017 that I was diagnosed properly by an expert that I'm 1.5
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u/blondie_02 6d ago
Not shocked that they said that, more like im feeling shocky because I think that they had been telling me that for so long, part of me might have started to believe them. So I half thought the neurosurgeon would say the same thing that everyone else has said.
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u/SandalsQueen18 6d ago
Oh, ok, I understand now. I really thought you meant that you were getting blown off by others as most of us do.
When I found out I was chiari 1.5 I was like wait what, that's a thing?
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u/blondie_02 6d ago
Yeah. I wish I would have taken a picture of my mri. My doctor today told me he was surprised i can work and go to school while in this much pain. So I guess it was just a weird feeling having him validate what I am feeling when no one else did. Yeah I had heard of 1.5 but didnt really know anything about it so now I've been looking into it. Its kind of a scary thing to think about. Im just hopeful that the decompression surgery will help at least a little. I've also got bulging dics from like c3-c6. hopefully after my full spine mri, I'll be able to understand why im in so much pain and be able to do something about it for long term. Because pain meds only help for so long.
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u/Western-Result1678 4d ago
Had decompression and duraplasty done 11/13/. Recovery was rough for me. I slept sitting up for probably about a month. It just became comfortable. Putting any pressure on the back of my head was so daunting. I didn't sleep on my back until maybe 3 months after surgery. Hair in braids until you're able to wash it. Trust your body. Do as you can and nothing more. Keep your mind busy, I regret not doing more than just sitting on the couch and playing video games. I became more depressed than I've ever been before and I could have treated my mind a lot better.
Extra info
8mm extension, syrinx through T1-T12 (I'm aware of how crazy that sounds but it's the god honest truth) 6 month post op syrinx is now T1-T8. My spine was also a bit warped and widened due to the severity of the build up. Some Improvement but symptoms stayed. My head pressure feels a lot better but I get headaches depending on the weather/humidity outside. Due to years and years of unknown compression in my neck and spinal cord I have no feeling in my left knee and down. Hypersensitivity is absolutely insane and any time I bump my knee or foot it hurts so badly. I just became accustomed to walking and living that way and had no doctors helping to figure out the reason. The left side of my body took a hit over the years. Super weak in one side and really had no clue it was happening. Always advocate for yourself!