My daughter, 15, almost 16 has Chiari type two and has yet to have any type of decompression surgery. Her symptoms have been minimal, headaches every few weeks, until these past two years when she began having headaches everyday. Some have been so bad that all she does is sleep all day. She has been put on 250 mg of Topamax which is as high as her doctor is wiling to put her without risking damage to her liver or kidneys and it isn't helping as much as she would like it to be.
She also recently has begun choking often when drinking or eating and having food or liquids go "down the wrong tube". I know that this is sometimes a symptom but is this a serious thing that should be considered when deciding on surgery or not?
We've talked to Dr. David Frim and Dr. John R. Ruge, Dr. Frim didn't seem to be as open to the idea of doing the surgery as Dr. Ruge but they both said it may give some relief. Dr. Ruge said if any symptoms become worse or anything changes, they we should do the decompression, I'm wondering if the reoccurring choking is in this category?
I'm just hesitant to do the surgery as I understand it may not help at all or it may help temporarily and then the symptoms may return. I also know that the surgery could be very beneficial to my daughter.
If anyone has any personal opinions or advice please feel free to respond, thanks!