Just my Husband and I are meeting with our daughters Dr. on Friday. We are seeing a specialist of the cerebellum at Boston Childrens Hospital. The last appointment we had with him, he strongly suggested that surgery would be beneficial to her. We are meeting tomorrow so that my husband can also become more a part of the decision process and to have some questions answered himself. I was hoping some of you had some ideas as to what we can ask him. She has an 18mm herniation without a syrinx. Her symptoms are headache, hand tremors, and fatigue. Her recent neurological testing showed weakness and delays in the area of the cerebellum. This is the final appointment we have before making the decision to go along with the surgery. Our next appointment will be with the surgeon himself if we decide to go on with this. I dont want to miss anything, I plan to go prepared with a question sheet and hope that you all might have something that we may forget to answer. I appreciate your input in advance. :)
OK, that's a pretty complete list above. If you decide on the surgery, let me tell you what I wish I had known BEFORE my daughter's surgery and maybe you can ask questions based on my daughter's experience. My daughter did not have a head wrap after surgery, nor was she sent home on steroids. Looking back, I think that perhaps the steroids would have prevented the swelling after surgery that may have led to her complications of meningitis and a pseudomeningocele. Hey, maybe not, but there's not harm in asking, right? Also, my daughter had a Duragen patch which is NOT sewn on, but rather laid on. Again, if it were sewn on would her complications have been avoided? Don't know the answer to that, but I sure would be interested in what your doctor thinks of Duragen vs. whatever kind of patch he prefers to use. I wish I had the knowledge to ask about the patch before her surgery, but all I knew at the time was that it was bovine. Best of luck to you :)