No sleep?

[Mollyks]

I had decompression surgery 7 years ago, my docs think I may have some slight compression again. I have tingling in my arms and legs and that's why they think that, but is it normal to not be able to sleep? I get sleep ranging from  about 30 minutes to  2 hours, and more only if I had a tiring day. I'm just curious whether it is something I should concern to my doctors with.

[Amethyst3]

You can go to Fedex Kinko's, and they'll make a copy of your CD images for several dollars.  

Regarding sleep, I have a hard time falling asleep for no reason and have been like that since early childhood.  The only thing that kind of helps is if I work out really hard that day, then it helps knock me out at night.  I finally learned that trick in junior high, when I started doing exercise videos at home to help me not be so nerdy and clumsy and behind my peers in PE class.

But on top of my normal insomnia, my permanent tingling makes it harder to sleep, because it hurts so badly.  But the more tired I am, the worse the tingling gets, so if I get too tired, I really lose my window of time to be able to fall asleep.  Then I have to take sleeping pills.

Also, just a few times I have woken up in the middle of the night not breathing, and I had to purposefully make my chest expand and contract, because it wasn't doing it on it's own.

[Mollyks]

We only got one CD, and we sent it up to him in Baltimore to check it out, we haven't heard back yet though.

[redkim]

Did you get a copy of your MRI and report?

[Mollyks]

cmoeller--The long term effects after surgery are very minor the majority of the time, I guess that varies from person to person, but my dr's PA said since I was young when I had surgery, it could be possible I have some compression again.

selmaS- Yes I do have a specialist, one of the best I might add, he's a very famous neurosurgeon. Dr. B. Carson in Baltimore.
I just had an MRI done this week and sent them up to him, but when I addressed his PA I didnt mention my unable to sleep, I wasnt worried at first, but it has gotten worse latley.  

And Thanks for y'alls responses :)

[selmaS]

HI and welcome to the Chiari forum.

AS all the above posters have said...get checked!!...Sleep apnea is a biggy with chiarians....it could also indicate something else is going on.

It is also possible that u may have  herniated tonsils again......
May I ask do u have a true chiari specialist?.....were u checked for tethered cord, Ehlers-Danlos, IIH , syringomyelia, or other related conditions?

I still have fatigue and sleep issues from time to time..,.but I do get nights where I am getting sleep.....just doesn't always feel as refreshed as I would like : )

Glad to have u as part of our little chiari family here, sorry for the reason u had to seek us out.

"selma"

[soccero]

I dnt sleep well either but seem to be very tired most of the time. I had a sleep study and it shows nothing. By the way my name is molly to LOL !!!!!!
Molly

[*Stormy*]

Hello and Welcome to the forum,

I have had sleep problems all my life too...many nights I have fallen asleep and then would wake a hour after...all night long!! Sometimes it would be my restless arms and legs, sometimes I'd wake up holding my breath, but a lot of the time there would be no good reason I would just wake up out of the blue.

Many of us have reported sleep issues...so I would definitely add this to your list of symptoms to discuss with your drs.

Other that the recent tingling...have you found that the last 7 years that you have had a respite from your symptoms? I am just over 4 months post op and so I am really curious about the long term experience.

Carolyn

[rod44]

I have the sleep issues as well, I cant say if it is CM related but my symptoms appear to get worse due to lack of sleep especially the dizziness.


Ray  

[ChiariWolf]

Frankly, for what it is worth I would concern my doctor. Even if it's not a chiari symptom, which that is not say it isn't, it is still something that needs to be addressed. It has been in the news lately that through recent studies they have show a strong link between both lack of and too much sleep and an early death. So yes, I'd say make the doctor aware.

It is strange sometimes what little tidbit makes the difference with a doctor understanding what is going on with your body. I will say that I've always had sleep problems. Either I can't sleep and will be up for days or the opposite where I sleep too much. Kind of bounce back and forth. Post-op it tends to be more often that I sleep too much.

Wolf