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emarismom
01-30-2008, 06:56 AM
Hi all,

Emiy has been complaining about "neck pain" over the last few days. It started on Sat. after a b-day party where she was bouncing in a bounce house all afternoon. (She has done this many times in her brace). Anyway that night she started complaining about it and I just thought she was overtired. Now this morning she has woken up with neck pain. Her brace was readjusted in Atlanta on Jan. 2. Do you think that somehow the brace is causing the "pain"? This has never happened before.

txmarinemom
01-30-2008, 07:09 AM
emarismom ...

Is the neck pain occipital? Possibly ACM related ( I have no idea whether she's I, II, III or III)? I see her last decompression was in 2004, and Chiari by its very nature can cause this, as I'm sure you know.

Regards,
Pam

(who also has communicating hydrocephalus - VP shunted for 28 years with no issues/revisions)

emarismom
01-30-2008, 08:13 AM
Pam,

Emily has never had any neck pain. It is possible that it is CM 1 related, but I think it is unlikely as she has been asymptomatic since the decompression surgery. Prior to the surgery, her only symptoms were scoliosis, memory fog, and leg pain. She does still have a syrinx (c-4 to T-7, if I remember right, with no cord expansion). Next MRI in April. March we will return to Atlanta. I am very worried as I want to try to correct the scoli, but I don't want to cause any problem with the CM/SM.

txmarinemom
01-30-2008, 08:27 AM
I'll cross my fingers it's nothing more serious than muscular pain/slight whiplash from the moonwalk ... those things are just an accident waiting to happen!

(and of COURSE that's why kids love 'em ;-)

Does she get any relief from ibuprofen or heat packs? Poor kiddo :(.

Regards,
Pam

Mom37
01-31-2008, 01:54 PM
I would call and ask the if the brace could result in neck pain. My daughter once had Spinecor, and her strap wrapped around one side of her neck, but it does depend on the curve, which way the brace is adjusted. It has been over a year since she wore the brace, but I remember her waking up stiff or sore, but not bad pain on her neck. My child never had any symtoms of pain from Chiari, though many do. Now her only symptom from Chiari was Scoliosis with a high upper curve. She was diagnosed with Scoloisis first and 9 months later with Chiari and had decompression surgery 3 months after that and spinal fusion 9 months after that. She didn't wear the brace about 3 months before Spinal fusion, once it was determined her curve was still getting significantly worse and surgery was inevitable as she was at a 60 degree curve in less than 2 years. She progressed 30 degrees each year.

christine2
01-31-2008, 04:09 PM
my daughter gets muscle spasms in her neck on the average of 2-3 times a month. I can actually feel the lump of muscle where it is spasming. We immediatly ice (no heat) 20 mins on 20 mins off and that seems to help and they are usually gone in a day or so. I asked Dr. Rivard and Coillard and neither was concerned they suggested massage therapy but it is hard where I live to get that done when it is needed. My chiropractor gave me some advice about "milking it out" I do ok.

We avoid bouncy things, trampolines and long walks on hard pavement. So far there have been no arguements, my daughter knows how important it is to becarefull with these things.

We are also aware of how her neck is positioned when she sleeps. She only uses 1 thin pillow. We try to keep her from sleeping on her stomach are teaching her how to lay as straight as possible when sleeping. It is amazing how aware these kids become of their body.

I would imagine that my little one's body is being cranked around by her brace and that is the reasons for the spasm.

emarismom
01-31-2008, 04:26 PM
Emily hasn't complained anymore since yesterday. I don't think it is "severe" pain. I am convinced that it is brace related, as opposed to Chiari related. She has had the chiari for years, where as the brace was recently adjusted.

I do limit some of the things Emily does. As a matter of fact, I'm convinced that her Chiari and Syrinx became as bad as they did BECAUSE of the fact that we had a backyard trampoline for our two older boys. From the time she was 2 until the time she was 4, she was bouncing. Of course, I have no proof of this, and there was no way we could know she had a Chiari Malformation at the time. But looking back, I do think that definitely contributed to Emily's Syrinxes becoming huge.

I haven't completly limited her from jumping, because I have limited other things-ice skating, certain amusement park rides, etc. I don't want to take away all her fun. The truth be known, any type of pressure or jolt on her back could cause serious problems. The chiropractor who braces her is not even allowed to adjust her in any way!!

I will look at her pillow and see if that should be changed. I never thought of changing the position she sleeps in. I may check that out tonight.

christine2
02-01-2008, 05:02 PM
I would bet that the trampoline did not help.
I also do not want my daughter to feel as though I have taken away everything. I encourage sports as much as possible to keep her muscles strong. I just feel that the rythmic bouncing is no good. She figure skates, swims, plays hockey ect.. when we do go to birthday partys that there is a bouncy thing at, I speak to her ahead of time and suggest that she takes it easy. She is very good at regulating her own time doing it.

As far as the pillow and sleep position. Her spasms are directly related to bad sleep position. I found that with myself too!

I am glad your daughter feels better!!