Chiari malformation!!

[livingalife94]

My younger sister just had a chiari decompression on thursday of last week, and she is having extreme pains at night after she wakes up around the same time each night. We are trying to find comfortable sleeping positions for her so if anyone who has had the surgery please tell me some comfortable positions you've tried?????

[Viva001]

Tell her it's very early in her recovery, and that she will feel better soon.  (my daughter reminded me that she was miserable for a week when she just had her tonsils out).
I was doing laundry after a week, but no lifting!  She'll need help with books for quite awhile.

Is she not on stronger meds due to her age?  Most of us have been on narcotics and/or steroids.

I found ice very helpful, even though I never did before (for sprains).  Not ice cubes, but the purchased ice packs from the drug store.

Best wishes for a speedy recovery.

[Jaimelyn0863]

I used a horseshoe shape pillow ez to sleep on side  or on stomach with forehead on pillow  so i could still breathe in cool air. i think it helped so great  right after surgery... but have used since lost pillow now i gotta find a new one i've been without for a while and sleeping on cold icey water bladder... hope that helps!!!!   Please w/b or let me know if anything works i suggested!   thank you


Jaime Lyn  tampa fl  
***@****

[selmaS]

  It is hard to say how long, but using the heating pad and getting her to exercise her neck will help....other wise the muscles with get tight and cause more pain and then the possibility of scar tissue forming.

We r all diff, so it is hard to say but it should not be much longer till she is sleeping better ...meaning the pain is not waking her....we all tend to have sleep issues. But pain should not be one of them for too much longer : )

Just keep on top of the pain meds slowly stepping off of them during the day, so she does get her sleep...using pain meds at night....and space them further apart as u see is possible.

I have a chart of the neck exercises I was doing while still in the hospital....see my profile page and do read the comments as not all on the chart r for us.

[irislita]

let her know it will subside, but recvovery takes a lot of time and I can only advice u...once she bumps back starting soft neck excercise...I didnt do and have the bill for that now starting neck excercises. the neck is going thru severe trauma and the muscles aswell...send her greetings from our chiari family and tell her...things DO get better

[livingalife94]

OMG thank u guys sooo much for the advice!!!! she is taking ibuprofen and tylenol and some kindof muscle relaxant that does work..Last night was her first night sleeping with something against her neck to keep her from rolling and thank God she slept 5 hours(yes i sat there for that long just waiting to see if she would wake up crying again) She's 13 and wants to know when the pain will cease,maybe like a rough estimate.

[selmaS]

  Hi and welcome to the Chiari forum.

Thank u for being an advocate for ur sister...it means so much to all of us to see others have the support of family and friends.

As the others mentioned a good pillow is a must, I also slept in a recliner the first few weeks, but in addition u need to keep on top of her meds at this point, wake her to take them at scheduled times...u have to keep ahead of the pain, other wise the meds do not work.

Heating pads on the shoulders and neck can help loosen tight muscles, as well as neck exercises to help avoid that as well as scar tissue to form....so warm soaks in the tub can also help her relax.

if she does not have a recliner...u can elevate the head of the bed using those bed risers to add storage under the bed (Bed,Bath & Beyond ) carries them and if u only use at the head she will be in an elevated position...next get a body pillow or an xtra blanket and roll it to make a wedge to keep her from rolling have her lay on her side , place the pillow or blanket roll behind her and have her roll back against it so she is half on her back and half on her side...this helps with side pains....and prevents her from rolling onto the incision.

Hope this helps : )

[irislita]

hi...too sweet u take care of ur sister. I have too sisters and do love them so much,it must be hard seeing ur sister going thru this...but let me tell u the worse part is over. it took me at least 3 or 4 months to feel some better.but believe me it does get better.what is really important is a good pillow...i have an extra pillow on top which is filled with little styropore balls...its adopting to the body and feels really comfortable. lately i bought another cervical pillow which is filled with corn and u can make it hot in the microwave.if she is advanced and the wound is healed try this one...too me it relaxes me sooo much and is better then any pill, but please wait till wound is healed.what meds is she on...i really needed muscles relaxers my neck by nature always tights up sooo much.i wish ur family the best..any question u have please we are there for u ;-))

[zygy2]

So sorry she is having such a hard time!  Sleeping was very hard for a while.  I actually spent a lot of time in a recliner and even slept there some.  Mostly at night I would use pillows to help keep me on my side and stop me from rolling over on my head.  It was very difficult though because with the sore neck and sore back it was just a long process.  They did give me valium (low dose) to help with muscle pain and that did make sleeping a little better because I don't really do pain meds.  Sorry I can't give you more information, you just have to help her try and find something that works and it is going to hurt for a while,.... the good news is that each day should get a little bit better and one morning she will finally say "wow, I slept better last night!"