decompression surgery done & still headaches

[helgy]

My twelve year old daughter has been suffering from headaches, stomach aches, hotflashes, & dizziness for the past 3 years.  Her headaches have been ruled out as migraines.  She has a headache everyday, but gets the "serious" ones at least 2-3 times per week.  She misses a lot of school -which she loves- and misses our on a lot of fun and activity with her friends.  She has been hospitalized 4 times within the last year.  Nothing seems to even touch her pain - even when she is in the hospital.  After laying in a dark room for 5-7 days with no outside stimulation, she is usually feeling better and can be discharged.  We have had so many Dr.'s looking at her.  Initially, she was diagnosed with Chiari Malformation in which she had the decompression surgery due to the numbness that she was experiencing.  We were hoping that that would eleviate her headaches.  It did seem to work for about 6 months.  It seems like over time the headaches are getting worse and it is really effecting her life.  I am hoping that someone has had a similiar case and was able to get some answers.  I am looking for any help that I can get.
Thanks

[ChiariWolf]

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?

[selmaS]

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"

[helgy]

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.

[selmaS]

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"

[helgy]

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"

[selmaS]

U r welcome...wish i had something more to offer.....

Wirh where u live have u been to teh chairi center inWI?

"selma"

[helgy]

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.

[selmaS]

I will PM u the info for them....

[redkim]

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!