Chiari Online Support Group

Help please for son's diagnosis


#1

Hi,

I signed up to this forum yesterday when the hospital phoned to confirm my son’s diagnosis. He is 19 months old. The hospital had done an MRI as his head was larger than average and happened to diagnose him with Chiari while looking for fluid on his brain. Until yesterday I had never heard of this. The diagnosis was done over the phone and they are not seeing us for another month so I feel a little helpless at this stage. I did a lot of research last night and feel ever so slightly more in control of the situation. At this time I can see that he gets head pains when he cries a lot and I think he may have sleep apnea (which I read last night can be linked). I guess at this point I’m looking for a little support and knowledge on what to look out for (as he is unable to communicate with me properly due to his age). I have a million questions for the doctors already but would appreciate any info people have on key questions I should be asking.

Thank you.

Jamie


#2

I had surgery at 51+ y. o. and can only remember a few things looking back. When I was learning to walk and would plop down on my bottom it hurt and I always cried; I was told to hush and was stood up again.
I had a migraine at age 5 that was cruel it was so painful.
At age (11) six months prior to beginning my period my body ached, I struggled to maintain a normal level of activity and I just never felt good from then on.
Post op I felt normal for the first time in my life. When asked on a scale of 1 to 10 ten being the worst how would you rate your pain; I grew up in pain and now I would have answered that question-14!
This is a scary surgery because the brain is involved. The brain needs to be properly taken care of to maintain proper nerve function. This surgery will become more common and its benefits better known.
You spoke well in you message and I am impressed with how you are handling his situation. Have faith. Best to you and your son.
I check this site weekly.


#3

Thank you for your reply it really helps to speak to someone who has Chiari. I have done hours of research but as he can’t communicate fully his symptoms it’s better talking to someone who can shed some more light on it. I have noticed he cries when he falls bump on his bum but hadn’t made the connection, thank you for that! It’s so good to hear someone had a positive change with the surgery as I’ve read so much continued suffering after decompression surgery! I have a couple of questions if you wouldn’t mind (please say if it’s too personal though):

Does Chiari ever effect your mood, my little one can go from laughing to extremely angry in seconds, I know all babies get frustrated but it is so different to how my girl was!

He has type 1, what type do you have? Am I right in thinking type 1 is the better end of the scale?

Did any of your family ever get tested for Chiari? Me and my mum both have several of the symptoms and I read it can be hereditary, my daughter has complained about several of the symptoms over the years and I’m now wondering if I should push to have an MRI done on her also?

Thank you so much again for your response it’s a big comfort as I said being told over the phone and having had no appointments yet was slightly overwhelming initially.

Thanks

Jamie


#4

Jamie,
My 12 yrs old daughter was diagnosed with chiari 1 malformation also. She has severe headaches, dizziness, ringing in her ears, depression, anger outbursts when she is hurting and her 3 yr brother is being too loud, recently she has had alot of trouble with double vision and blurry vision. The neurologist has taken her out of school because with the combined symptoms she was having difficulty walking to classes because of dizziness, making it through the whole day without calling me to come get her. She has many days where she feel weak and she just wants to lay in bed all day. She is very over weight for her age, she is fully developed, started her period at age 11 and she is already 5’ 4" tall. I am 4’10" so height doesn’t run in our family. The Dr’s said she may have too much growth hormone being released due to the pressure on her brain. She goes for an eye exam to check the pressure in her eyes monthly unless her vision continues to get worse or have a severe change. This is all very new to us as well. She was diagnosed in May. Her next neurosurgeon appt is Nov 12th. The surgeon says that she definitely needs the surgery but she has to lose a total of 20 lbs to decrease the risk of her lungs collapsing during the surgery. This is very scary for our children and us as mothers. We can’t take their pain away and fix everything…and that is what we are supposed to be able to do. I am a nurse and even with that in my background…this is very difficult for me. I am nervous about her having the surgery but scared for her not to have the surgery. We had to get her a wheelchair to use when we will be out walking long distances because she get to weak very fast. She has a very rapid heart rate as well, and breathes fast and heavy when she sleeps. I dont know if telling you her story and symptoms has helped any or just made you more nervous. I hope it helped. I have been completely alone in this also and wish i knew what to expect next…every day is different with her , her mood swings, her symptoms…it is all very hard to understand and cope with. Best of luck to you and your baby. If i can do anything to help please let me know.
Stephanie