Chiari Malformation Community
Need Help - very little info from doctors!
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Need Help - very little info from doctors!

Our 9 year old son is seeing a neuro for a host of reasons.  Seizures (not frequent), OCD, ADD, Migraines.  Last year an MRI was done and they only thing they found was a DVA.  Another was just done and we got a phone call last night, the only thing they told us is that he has "low lying cerebral tonsils".  We have been referred to a neurosurgeon.  But have yet to hear back from them.  Those four words are the only thing we have.  Is that a Chiari Malformation?  Does anyone with Chiari experience the symptoms that he has been having?  
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620923_tn?1405964489
Hi and welcome to the Chiari forum.

It is so hard to understand what ur DS has/will be dx'd with.If the NS u r going to is not a true chiari specialist, then he may not get that dx.

It also depends on how low his tonsils r herniated.....some will only recognize it as chiari if the herniation is 5 mm or larger.

Many with Chiari do have migraines as well as Chiari HA's ...some children have experienced seizures.


Once u have a copy of the MRI's and the reports u will be able to get a second opinion and know a bit more where ur DS's dx is.

Ask this NS what experience and how much he has with this condition...u want a chiari specialist and not just a NS....there is a big difference.

I am glad to welcome u to our Chiari  family here and hope u get the info and support u need.I am also sorry Y u had to seek us out.

"selma"
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999891_tn?1407279676
Hi and welcome to our comunity....

I agree with the advice from selma....

As Chiari is a conginetal developmentel issue as is developmental venous anomalies there could be a link between the two...

Ray
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Avatar_n_tn
Thank you both.  

This afternoon we were finally able to get an appointment for the 10th.  Dr. Fletcher in Houston.  Googling him I find his name attached to alot of chiari info.  Including conqueringchiari.org.  We are trying to get into Dr. Whitehead with Texas Children's for a second opinion as well.  

In the mean time expect to see me lurking trying to absorb all of this.

Any feedback on either of those drs?

I would appreciate suggestions of questions to ask at the initial appoinment.  

Also, those with young children (my son is 9 and EXTREMELY intelligent) - suggestions on the first appointment?  do you ask all of your questions to the NS with your child in the room?
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620923_tn?1405964489
Here is a link to questions to ask the dr from another thread it may be of some help.




http://www.medhelp.org/posts/Chiari-Malformation/Questions-for-Dr-Heffez/show/1096617
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707040_tn?1337319979
Hi
welcome to the forum, sorry your son is having to go through this. Hopefully you will soon have answers.
My son is older, he was 15 when he had his surgery. Most of the time he was in the room when we were discussing the chiari and surgery. He is also very smart and it was very important for him to be there.  If I had questions that I did not feel were ok, there weren't too many, I spoke with the doctor outside the room or just called later to ask.  
Hang in there
Sherimom
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979826_tn?1389039958
hi I'm 16 so older then ur son but from my experience I did not want to know any of the details of what they where going to do inside of me but I wanted to no lots about what is wrong with me
Molly
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707040_tn?1337319979
Hi
My son is 16 now too.  I thi"k he wanted to know a lot about the same things as you did. Most of all he wanted to know if he could go back to sports after surgery!!
I hope your surgery went well and things are better for you now. How long ago did you have your surgery?
Sherimom
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