I am a 19 year old female and I have Arnold Chiari Malformation. They found it at age 16 and I had a decompression surgery when I turned 17. It helped the 24/7 headaches but after I developed a lot of other symptoms and have been diagnosed with many things. My worst symptom now is my balance and coordination. In have to have help on stairs and hills. I also cant even run or jump due to my awful balance. I fall a lot. My symptoms also include difficulty swallowing, dizziness, nausea. I have been diagnosed with a syrinx and a kinked brainstem. Other diagnoses include ataxia, sleep apnea, neuropathy, POTS, cervical dystonia, depression and there are probably a few I cant think of at the moment. They said the inside of my head where theyb did my surgery in 2011 is still swollen and it shouldn't be. I am scheduled for a spinal fusion surgery next month, September 12. After surgery they wanna put me in a rehab hospital to teach me to do ADLs again (activities of daily living) Such as walking. Im very scared and just need some input on this surgery. I already rescheduled it once because I was nervous. I was scheduled to have it yesterday. I had pre op and everything. Thisis just a very risky surgery and im worri8ed about coming out worse then I am??? Please help!!

I am sorry that at your young age you are having to deal with so many issues. I think if it were me, and I was that nervous about the surgery, I would talk to my doctor. You need to feel 100% confident in what they are proposing to do. You need the doctor to not just say words, but to reach you emotionally so you can feel assured. Until you are sure, I don't blame you one bit for being on edge. Anything to do with the brain or spine for that matter is a reason for concern. Not fear, young one, but concern. do you have support at home? A good network of friends with you through this ordeal?
I take it they want to do decompression on your spine? Do you know all the details of what your doctor thinks would help you? I am here to listen. I am older and been through several spinal fusions. I do know first hand how scary these surgeries can be. NT will be here, to support you and so will I. Is there anything I can do to help? My own spinal fusion, the second one, was successful at relieving my pain for the most part. I am here, if you need an ear. ginnie

My doctor said that there was a 70 to 80 percent chance that I wld come out ok. That is not 9on a permanent feeding tube or paralyzed. That's my main concern. I think it is a decompression. But when I cancelled that first time the neurosurgeon called and said it was ultimately up to me if I did or didn't want to do it but he was concerned with my swallowing and breathing

Have you done any research on the procedure? Those odds are good, but I don't like to gamble as a rule. Swallowing would indeed be a real issue. Is he sure it isn't something to do with the Upper GI stuff, like gerds? If it is do to the spinal problem you need more from your doctor than what he is giving you. Just saying it is up to you, isn't the best approach. Either you really need the surgery or you don't. Being in the middle, and not having a definative answer isn't the best position to be in.
I was at risk of being paralized. I reversed the curve of my spine with my work. I had no choice in the matter at all. I wasn't able to move my head. For me it was a no brainer, and the same DX was given to me by two other doctors. I had confidence that it needed to be done. Have you gotten some other opinions regarding the swallowing issue? I am just thinking out loud here. Let me know who you have seen so far, and results of your tests OK? I don't know a whole lot about the condition you have, just a little from what I picked up on NT and on line. ginnie