had visit with neurosurgeon who said i am not a candidate for decompression due to not having any visible damage to spinal cord. Ill be honest, Im obese, its obvious by looking at me. I was told that I need to lose weight and i will feel better. I just wanted to cry. And to top it off, there was my husband sitting right next to me agreeing with him "yea honey, maybe we should just hit the gym again" I could have just died.
Soooo back to my chiari, it 6mm, clearly touching the spinal cord. Dr said it cannot get worse. i am reading so much conflicting information that says yes it can cause further nerve damage yet I am sitting in front of of "specialist" who is supposed to know all about this and he is telling me, oh, its nooo big deal, we will just give you a big dose of topamax that will also help you lose weight and treat symptoms as they come.
I live in Dover DE. I am not too far away from Johns Hopkins. I keep wanting to call there and make an appointment but I have great fear im going to hear the same thing. I just dont know what to do...
Bette, hit the gym??? I would have been upset too, so sorry. I have read that some patients with high intercranial pressure get some relief with a bit of weight loss - but never heard of that making Chiari symptoms disappear. I also don’t like the tone that one waits for visible cord damage before considering surgery…what? He needs to see cord damage? I support you on finding another NS, or two or three more whatever it takes. With chiari many NSs just don’t know that they don’t know - it’s our job to know and weed out the NSs with an outdated Chiari education. Keep your chin up and keep moving forward. In the mean time suggest to hubby he get clubbed in the head and then immediately jump on a treadmill and let you know how awesome he feels.
My doctor has told me as well to lose weight… it’s hard to lose weight in general but when you are dealing with chiari symptoms it makes it that much harder. I’m having really bad headaches again and they get worse the more active I am… probably in part to an increase of blood pressure but also the pinching or whatever is going on that is causing my headaches in the first place.
I would recommend getting a second opinion or even a third opinion if you feel it’s warranted. My chiari was 5 mm and even though I was very very overweight at the time (close to 260 lbs at 5 feet 1 inch height) my surgeon still performed my surgery because my symptoms were out of control.
Thank you all!!! You’ve given me some great feedback. @Nykki yes, the topamax is working with appetite but when I excersize my lower back pain just kills me! So it’s going to be a slow process for me.
