Chiari Online Support Group

New diagnosis


#1

My son was just diagnosed. He is seeing the neurosurgeon tomorrow. My son has been sick for years. Complaining of headaches and stomach aches. He vomits every morning and has done so for many years. He has been going to the chiropractor since birth and had always complained of neck and back pain. These past 5 months he has been so very sick. Complaining of not being a le to breathe. He had been having trouble with that over the past couple of years but is has been bad these last 5 months. He has been in the ER 4 times this year for migraines. But the migraine coctails only helped in that they put him to sleep. He was admitted to the hospital last week and was given a 3 day treatment for migraines and was sent home only yo get the Terri le headache back in a day. He has had 2 concussions but they never caught the chiari malformat ti because I asked them to look for it. Two of my nieces have it. My son has been so sick he has not been able to attend school for about the last month. . He is 14 because I asked them to look for it. Two of my nieces have it. My son has been so sick he has not been able to attend school for about the last month. . He is 14 years old and is missing out on his life. Has anyone else had similar a child or themselves had similar symptoms?


#2

Sorry for all the typos. I am trying to type on my phone.


#3

Hi, I’m 15 years old and I’ve had many of these symptoms such as having headaches all my life and a lot of stomach aches. I also went to the chiropractor since a young age because of pain in my neck and shoulders so it was awful finding out that this could have damaged me more. I also have been having issues breathing but I am currently trying to find out if this is a symptom of chiari or something else. Before being diagnosed I had concussion as well but they didn’t find it then either until later when my mum insisted on an mri scan about general headaches. If your son would like anyone to talk to I’m here because I know how hard it is having this and not having anyone your own age to talk to. Is your son having/had the decompression surgery?


#4

My 16 yr old has been battling migraines and stomach aches for past 3 years. They have placed her on ever med out there even anti depressants thinking she was depressed and that caused her symptoms. She also has been missing out on life. She is too tired to go out with friends, has dizzy spells, nauseous all the time, blurred vision at times, migraines, pressure in back of neck. She loves to work out and cannot do that anymore. She pretty much stays in her room watching tv on her computer or she listens to music. She goes in for decompression w/ dura plasty surgery on July 7th. I cannot wait to see if this helps and gives her back her life.. So sad to see out kids so young and not being able to do the things that normal teens are doing... I wish the best for you and your son.. Has he been to a neurosurgeon yet?


#5

Hi Lisa. I had my ACM surgery in 2011. For 4 years everything went well. But for the past few months am feeling the same symptoms prior to my surgery. My stomach-ache bothers me a lot. It comes at 4am till 6am. and it seems it has a pattern. I almost feel it everyday. Am thinking of going back to my NS only am afraid to what he will say. My other Neuro advised me to have my MRI. But I haven't done yet..


#6

Hi! My 17 year old daughter was diagnosed a week ago Wednesday in South Carolina where she lives w her dad. I brought her home to s florida to have the surgery at Miami children’s hospital. We meet with the surgeon next Wednesday, July 1. She has been suffering for years as well. I am scared shhhless after reading all the posts about the pain after surgery. I’m sorry that I have nothing to offer you except to ride through this path, holding each other’s hand. My prayers are with all of us. Natalie.

I now see you posted this in May… Did your son have the surgery?


#7

Hi Lisa

Tell me more about your nieces and son. My son is 13 years old and going for surgery on 12th November

Would be nice if we can share stories.

My son is tired all the time and everything is a hassle so I hoping I am doing the right thing.