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-   -   Need advise... (https://www.neurotalk.org/arnold-chiari-malformation-and-syringomyelia/124779-advise.html)

gabbycakes 06-14-2010 05:42 AM

Need advise...
 
My 15 yr.old daughter has suffered with headaches for quite a long time, she ended up in the ER with a severe headache about 8 months ago. They did a CAT Scan and discovered a Chiari Malformation. Advised to go a headache specialist which we did she ordered a MRI with and without contrast. The Diagnosis was a very slight Type 1 Chiari Malformation and a very, very small tumor on her temple in the front of her brain. Sounds worse than it is. Got sent to a Pediatric Neuro Surgeon, saw him and his recommendation was to monitor the tumor. It was so small he was not able to do any further testing except for the MRI's. So she has been on a every 3 month MRI testng schedule. They are doing this to see if the tumor has grown and it has not, she will be going for her 3rd series in about 3 weeks. At our last visit he suggested to just take it out, it is very small it would take 45 minutes and then we all don't have to worry about it. What would be the advantages of this we asked, since her headaches have all but stopped, she is not having any other synptoms i.e. blacking out, dizziness ets. He stated right now it is not attached to any blood vessels and not attached to any part of her brain which it could stay like that for the rest of her live, but if it changes it changes rapidlly and then it becomes a big deal involving of course it being cancer etc, etc....NOTE: He also wanted her eyes checked which we did and she did need classes which he thinks that is what was giving her the headaches, not the CM or the tumor. I also contacted the Chiari Malformation Institue in Long Island and they stated her CM was not serious enough for there facility. Her current doctor is a wonderful Neuro.Surgeon Peds. Specialist out of Weil-Cornell, NYC.

I apologize for rambling but I wanted to give a good picture. Now to my question, I absolutely love this doctor out of NYC but if we where to consider removing the tumor for the reasons I have stated above I would of course get a 2nd opinion. I am looking for a recommentation for a Peds. Neuro Surgeon in the NY Metro area. I would appreciate any feedback at all. It just doesn't sit right with myself or my husband to cut into a perfectly normal 15 yr.old without doing all we can. Yet I understand his logic completley but it's still brain surgery.

Thanks to all that respond........

razzle51 06-14-2010 11:55 AM

dr.
 
tHE Chiari Institue is in NY .

gabbycakes 06-14-2010 05:42 PM

Quote:

Originally Posted by razzle51 (Post 664609)
tHE Chiari Institue is in NY .

Thanks so much for you reply. I have already contacted them and they said they reviewed her test and she is not a candidate for the Institue because she only has a very slight type 1 and the type she has will not change. She is not suffering from the Chiari or the tumor, but I would like to get a second opinion. Any other ideas please let me know.


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