How is it that when this procedure is done there is only a 50/50 chance that it will help? I don't understand why the problems don't just go away, when the problem no longer exists.
The original cause of the problems is (usually) resolved with decompression surgery... But that doesn't always mean everything has been fixed. For instance if you have nerve damage from Chiari, those nerves are likely not going to ever feel better on their own. Doing the decompression surgery stopped the damage from going any further but won't reverse the damage already done. Does that make sense? I'm trying to think of other ways to explain it... midnight isn't my brain's favorite time to think! :)
Let me know if you have any questions!
My doctor wouldn't make any promises on anything other than the headaches. I agree with 7thhouse, some things are the result of nerve damage and will not resolve. Especially if the herniation was compressing a long time before surgery.
I'm 3.5 years out and having some headaches and swallowing issues (started about 6 months ago). I will be getting another brain/spine MRI and swallow study on the 20th and back to the doctor on the 26th to see what is going on. I'm hoping it's a quirk and not related to my Chiari.
First of all, I would like to thank everyone for their time and consideration. There is most assuredly comfort in hearing from those who are actually dealing with this diagnosis. I think the Dr's give you very conservative expectations as to not get your hopes too high. I actually have an incredible Neurologist who when everyone else said no, stood up and fought back on my behalf. He is not the Surgeon that will be working with me but, he will be managing my care. What I would really like to know is what kind of symptoms were others having and as a result of the surgery, what the outcome of those symptoms were? I am a mother of a beautiful 4 year old boy and I try to ponder what my future would look like, with or with out the surgery. For me, my Vagus Nerve ( Autonomic Nervous System ) seems to be compromised as some of my symptom's ie. the Syncope ( blackouts and irregular heart beat ). Is there some kind of nerve mapping the Dr's do prior to the surgery? As 10 of the 12 cranial nerves pass through that opening. It was almost a year ago, that I had convinced myself that I had MS. It was the only thing that could account for all the symptoms I had. Do others suffer from a plethora of symptom's and to what degree would the consensus be, that the decompression relieved those symptom's? Not that I wouldn't be thrilled to be free of the headaches as they assuredly take away from the care of my child. Or if the headaches would just stay at level you can manage, that would be wonderful. I don't believe in being drugged on hard narcotics while caring for my son. Therefore, I only take medicine at bedtime that will allow me to sleep. Truth be told, I'm scared to death of the idea of having this surgery. My son deserves so much more though. I can only pray this surgery will allow me to be stronger and more able to interact and play with my son.
I totally understand your fears and frustration.
I'm going to describe things I think were related to my Chiari. I may have had more things that were related to it that I am unaware of:
~occipital headaches: like a heaviness in the back of my skull that radiates forward (sometimes my entire head) especially with coughing, sneezing, bearing down, lifting heavy things
~nystagmus- this was something I didn't know I had, it was found during my neuro exam
~left arm/shoulder and neck pain and numbness in my fingers on that side- I thought it was due to the way I sit at my computer or I slept on it wrong or pulled something
~Hearing loss- moderate to severe (both ears)
~fatigue. Serious fatigue. I totally attributed this to stress/lifestyle.
~herniated cervical discs (found on my initial MRI)
Interestingly ten years earlier, I was diagnosed with PSVTs (arrhythmia) and eventually had a radio frequency catheter ablation done to fix it because I couldn't tolerate the medications to control it. The procedure was successful. I now wonder if my arrhythmia was somehow related to the Chiari. I'll never know, but I found it interesting that it was on the list of symptoms.
I had the surgery Aug 09 and the only things that weren't relieved were the hearing and slight numbness in my forefinger and thumb. For three years I was symptom free, it was wonderful. I am now experiencing the headaches, some numbness and difficulty swallowing (I didn't have that before). I will be having another cervical spine/brain MRI and swallow study on the 20th to see if this is a Chiari thing or a disc issue or what. I am hoping it can be resolved easily and I can go on with my life. I know it may not be.
I don't regret the surgery for a second. It was worth it, to me.
I'm not sure what you mean by nerve mapping?