I get migraines unrelated to the chiari HA's, which I get too, but not as often as I was before surgery in January. My migraines are hormone related, so I get them around my mentral cycle. Since your daughter is close to puberty, or going through it, could her hormones be affecting her and causing more migraines. Could they be food related?
A co-worker who sits behind me also get's migraines, he found that drinking a lot of water helps, it helps me too! The one thing he was going though was using cystal light which has food coloring in it, which can cause migraines. So can cheeses, meats, hot dogs, caffeine (even the amount found in chocolate). I would monitor what she is eating too...
I wish I could do more to help and I hope she get's some answers soon, it's sad to see youth wasted like this, she should be having fun!
I will PM u the info for them....
I did not know that they had a chiari center in Wisconsin. Where is that at? We had the surgery done at Marshfield by a neurosurgeon that I have great faith in. At this point, I would love to get a second opinion to make sure that something is not getting missed.
U r welcome...wish i had something more to offer.....
Wirh where u live have u been to teh chairi center inWI?
"selma"
Thank you for your thoughts and ideas. My daughter has had 4 MRI's within the last 3 years. Her CSF flow seems "normal" and her syrinx actually seems to be shrinking. Yet the headaches persist.
"helgy"
an after thought....I was told to expect to go thru symptoms after surgery as u heal....not sure if this is what is going on with ur DD, but a follow up MRI should havew been done 6 months post op and again now since she is experienceing these symptoms.
"selma"
She underwent a suboccipital craniectomy, C1 Laminectomy and duraplsty in December of 2006. She does have a septated syrinx also. Although her latest MRI shows that "things look good". She does not have a tethered cord. Her neurosurgeon does not feel that her headaches are dirrectly related to her Chiari. I don't know what to think anymore. I just know that we are having a hard time staying positive. This has been going on since she was 9 years old.
Hi and welcome to the Chiari forum.
May I ask, was ur DD checked for other chairi relaated conditions like tethered cord, a syrinx....
There r diff types of decompression...was her with a duraplasty?What kind of patch was used?How long since the surgery?.....Did u have a chiari specialist? Has she been back to teh NS for a follow up MRI post surgery?
Sorry for all the questions, but it will help us guide u to where to turn or what we feel it could be.....
We r not drs and not medical professionals...just other chiarians searching for answers and support.
I again welcome u to our little family..sorry for the reason, but glad to have u here : )
"selma"
Wow, I'm too new at this to really give you a long term answer. I'm only 7 weeks post op. But I do feel for your daugter and commend you for supporting her. Believe me the headaches, occasional nausea and some of the other seemingly weird symptoms are very weird to us as well, not just to the onlooker.
One hard thing to digest is that there really is no cure for Chiari. Has she had a recent MRI to verify what's going on now?