chiari symptoms

[lcolangelo]

I have a 9 year old daughter with a chiari malformation--she has had 3 decompression surgeries due to bony regrowth. She has recently begun having severe stomach and chest pains, and mid-back pain ( typcially her pain is in her neck) Our neurosuregon said he has never heard of these symptoms being related to a chiairi-- but I can't help feeling that they are related somehow-- Has anyone ever heard of these symptoms in relation to a chari?
Thanks

[Janice]

Hi lcolangelo and Welcome!!

I don't have CM, only SM. Therefore, I'm not really sure if these are symptoms of CM, I was just wondering if she's had recent MRI's of the entire spine to check if she has any syringes in the spine.

If there were a syrinx, depending on the location, the symptoms you mentioned could be present.

Has the doctor provided options for methods of determining why she has the current symptoms? Maybe she should see her pediatrician because it is possible that they are related to something all together different that can be relieved by treatment with someone other than a NS.

I pray you find answers and that your daughter gets better soon.

Take care,

[Sara]

Hi and welcome
When was the last time your daughter was re-imaged? it might be time for a new scan. Some patients develop raised intracranial hypertension which can cause a lot of symptoms particually naseau. Is it just stomach pain? My daughter has the nausea and vomitting that goes with raised pressure, but she also has gastritis- pre-ulcer- probably due to stress and all the meds she takes. She takes prilosec for that.
Is there any scoliosis? If possible, think about coming to the ASAP conference this summer. It is a great place to meet and mingle with experts and parents and patients alike. http://www.asap.org/2008/2008-conference.html

Sara

[baabaablksheep04]

I have a 9 year old daughter with a chiari malformation--she has had 3 decompression surgeries due to bony regrowth. She has recently begun having severe stomach and chest pains, and mid-back pain ( typcially her pain is in her neck) Our neurosuregon said he has never heard of these symptoms being related to a chiairi-- but I can't help feeling that they are related somehow-- Has anyone ever heard of these symptoms in relation to a chari?
Thanks

I have an 11 year old son who just had the surgery himself and he had the same symtoms before surgery. He still has the neck pain, just not as harsh. I read that people with Chari will live with Chronic pain forever so, tell your doctor to read up on it. If I can get your email address I can email the site that I have found very informative. Becky My email address is baabaablksheep04@yahoo.com