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Chiari Malformation Community
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3184083 tn?1347402143

Headaches when I wake up

First off, I have CM1 (decompressed already), got hydrocephalus (had a VP shunt put in), got intracranial hypotension (my shunt was draining to much, so my brain started sagging), and found out I have Idiopathic intracranial hypertension (which they put a valve in my chest to slow down the drainage), and I have a syrinx.

I woke up with the left side of my neck hurting a few days ago (like I slept wrong). It hurt to turn my head to the left, so I've been stretching it. The past two days, I've felt like I had sinus headaches, as it hurt behind my eyes, especially my right eye AND I've woken up with bad headaches in my forehead, right over my eyes (with it being a little worse over my right eye). Strangest thing is, when I get up they go away almost instantly. It's almost the exact opposite of when I was having pressure headaches and they went away when I would lie down. I feel a lot of pressure in my neck and I'm not sure if I'm imagining it, but I feel pressure in my head again.

Also, last night, I told my husband that all my incisions felt like they hurt except for my head incision. I thought, "Oh, maybe it's nerves or something." Then about an hour later, I realized that the incisions that are hurting are the only ones that my shunt goes through... my chest (where the valve is), right under my rib cage (where they put my shunt in from; after it kept coming out of my peritoneum from a lower position), and where it now goes into my peritoneum (I don't have a scar, but I guess I do internally).

My last MRI (last month) showed that my the new valve seemed to be working and my brain was a little higher and my syrinx was a little smaller. I opted to not deal with anything surgically right now and to have another MRI in 3-6 months to re-evaluate, and I'm just supposed to call my NS if I have any problems before that. I hate contacting him, mainly because I usually feel like I'm over-reacting, but every time I have had a problem, there ended up being a problem, even if we couldn't figure it out at first. Any thoughts or ideas?
3 Responses
620923 tn?1452915648
COMMUNITY LEADER

  Hi....sounds like it could be too low a pressure issue...u may want to try to raise the head of ur bed so u r not flat, it may help with this issue.

Not having a shunt myself I really can not add first hand experiences...so u may want to ask zygy2 or soccero....

keep us posted on ur progress <3
3184083 tn?1347402143
I now have a huge knot where the catheter goes into the peritoneum, so I'm pretty sure my shunt came out again. Argh!
620923 tn?1452915648
COMMUNITY LEADER

  Sorry to hear that so,I imagine u have to go back to the hospital to have it fixed.....

Shunts can be high maintenance until they find the right fit....

Keep us posted.
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