Surgery for Daughter?

[AlissaRobbins]

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!

[selmaS]

  Did they rule out Ehlers-Danlos* and other conditions? Many share symptoms so it is hard to know which is causing symptoms and they can affect the outcome of surgery if surgery is deemed necessary.

CCI can also be an issue and is generally present when one has EDS*.....Baslar invagnation  is another one some Drs can miss.....but it is one that can also cause issues when the cerebral tonsils are not the main issue.

[selmaS]

  Hi Alissa and welcome to the Chiari forum.

May I ask, did either Dr do a CINE MRI to see if there is a CSF obstruction or MRI's of the thoracic and lumbar spine to rule out a syrinx, disk issues, tethered cord? Then testing to rule out other possible related conditions?

Many times it can be a related condition causing many of the symptoms, and knowing what other conditions one with Chiari has can help determine the best course of treatment.

[AlissaRobbins]

Hello, thanks for your input. The Doctors did do tho tactic and lumbar spine MRI's and there is no syrinx, disk issues, or tethered cord. There is also minimal blockage of spinal fluid, thus contributing to the hesitancy on the doctors opinion to operate.