Looking for direction

[jenjenriley]

Hello, my 11 year old son has recently been diagnosed with Chiari Malformation. We have been going to doctor for about 2 yrs now with his neck pain and headaches.  We were recently sent to a Neurologist, had mri and results showed Chiari Malformation.  My son was in the room and I was in shock when the doctor said brain surgery.  We have an appointment the 26th with Neurosurgeon now.  I have been researching this because I did not ask alot of questions due to my son being in the room and shock.  I am just devistated.  Do I need to get a second opinion? The doctor has written my son's school a letter that he is not to participate in any PE activity or do anything that could cause trauma to his neck.  Where do I go to get a second opinion? We are currently going to Cook's Children's in Fort Worth. I was told not to go to a Neurosurgeon for 2nd opinion? Can anyone give me a doctors name that specializes in this.  Any information about what questions to ask when we go on the 26th would be great. Also, dealing with the school is a whole other story due to state rules he has to make up days he misses and he is missing alot due to pain. It is very stressful and upsetting. It is bad enough dealing with the illness now I'm having to deal with the school telling me when and how often my child needs to be at school. It is like the state is in control of how I raise my child.

[pamk5]

Hello and welcome.  I am sorry you are going thru this with your child.  My son has been having migraines, severe allergies etc for years.  We have had our struggles with attendance as well.  It got much worse when he entered high school, apparently the attendance rules are much more strict then.  This year I made the decision to enroll him in online high school and it (so far) is the best decision I have made.  His average is higher and he will finish much sooner than in regular high school.  He hasnt been stressed out or as sick.  So far he hasnt been diagnosed with CM but has an MRI done that looks to me like he may have some crowding.  Just a thought I would throw out to you.  I cant really add much to what Selma has said except again make sure you find a true CM specialist it will save you so much frustration.  

Pam

[STL5]

MAKE UP LIST OF QUESTIONS FOR NEXT DR VISIT.
MY NEUROLOGIST MADE ME PROMISE THAT I WOULD GET A 2ND OPINION AFTER SEEING THE NEUROSURGEON SHE RECOMMENDED.
I WAS UPFRONT AND TOLD 2ND NEUROSURGEON THAT I WAS SEEKING A 2ND OPINION.  HE EVEN OFFERED TO RECOMMEND ANOTHER DR IF I WAS NOT HAPPY WITH HIM OR WHAT HE HAD TO SAY (3RD OPINION)
I LIVE IN A DIFFERENT STATE BUT IF IT WAS MY CHILD I WOULD GO TALK TO THE SCHOOL PRINCIPAL OR FURTHER UP IF NECESSARY.  MAYBE THERE IS A WAY TO WORK OUT SOMETHING (SUMMER SCHOOL). MOST LIKELY THE SCHOOL IS CONCERNED WITH COMPLYING WITH STATE LAW IN ORDER TO RECEIVE FUNDING.  AS A LAST RESORT YOU COULD LOOK INTO HOME SCHOOLING YOUR CHILD.

[selmaS]

Hi and welcome to the Chiari forum.

I understand ur shock and frustration by the news....most of us r like a deer in head lights....

It is best to get a second opinion by a NS that is a chiari specialist..not a regular NS....many reg NS will offer to do surgery as it is money in their pockets, but u want someone that is more experienced with this surgery....

There r some chiari specialists that also specialize in pediatrics..so u may want to look at that...as well as the Dr that suggested surgery...ask more questions....

Does ur son have a CSF blockage and overcrowding...what symptoms besides the neck pain and HA's?U deff want to get more info...what type of surgery as there r several types....one where they open the dura and cover with a patch, then u need to know what type of patch.,.I know this is all a lot of info, but there is sooooooo much u need to know and ask and I am only scratching the surface.....I know u r overwhelmed already..so, for now that is all I will go into.


Stress of missing school and assignments can make his head pain worse....mayb u can get a home school program in place so he goes to school half the    time and the rest at home to take that stress away and that also helps with the school needing his attendance records to be at a certain level....see what compromise they can make.

Relax....we r happy to have u join us, but so sorry for the reasons u had to seek us out...especially since a child is involved.

"selma"