The question of the day that I would like to have answered or input on is, "When or how did you decide to have surgery and are do you feel as if your surgery gave you improved quality of life?
Here's a little history as to where I'm at today.
Diagnosed in 2006 with Chiari 1 and Fibromyalgia. 13-14 mm. Surgery was scheduled in 2007 and I cancelled it due to losing my father who was my support person. I have extreme symptoms from chiari headaches, very loud ringing in my right ear that is progressing and getting louder. Pain in neck, shoulders, arms. Feel as if I have an ice pick stabbing me in the throat which comes and goes almost daily. Trouble swallowing. Short term memory loss. Insomnia, fatigue, loss of sensation in my hands. Legs feel extremely weak even though I have larger calf and thigh muscles from a life of dancing and gymnastics. I am medicated and functioning as a small business owner, (best way to be if you have Chiari, you can make your own schedule and adjust your calendar if your having a bad day). I saw the Neurosurgeon in February and I asked him how many decompression surgeries he has preformed and his response was, "That's like asking a mechanic how many alignments he's done", not the answer I needed to hear and he didn't put any of my fears at rest.I forgot all of the questions I should have asked him and came home to my husband without good answers or feeling like I could make a decision as to what will be best for me and my future. I am currently looking for a Chiari specialist in the San Diego area. I'm hoping that I will find the right Neurosurgeon who I can connect with and will answer my questions so that I can make an educated decision as to the million dollar question "When is the right time to have surgery? Will my symptoms improve? will I be able to do the things that I do today, post surgery?
Any suggestions??? Seriously frustrated!! Please help me get in control of this nightmare if you can.
Trying to stay tough in San Diego and hopefully my Chiari family can guide me!!
P.S.
Plan A is "Failure is not an option"! Plan B is revert immediately back to plan A.
Once I realized that I couldn’t work and lead a normal life with my symptoms I sought a chairi specialist. From there I was told I wouldn’t improve and would probably worsen without surgery. I had the option of waiting or just getting it over with so I opted for surgery. I’m one year and five months post op and could not be happier. I may still have a few issues here and there but I’m so much better than before! I know not everyone recovery is as successful and I acknowledge I’m lucky.
I had surgery 6/23/2011, I had 18 mm tonsils hanging down there, exertion head pain to the max. coughing sneezing burping and sex all sent that pain from the back to the front of my head with my pulse. Putting my head down or looking up it got worse. I am so much better now. I am a quilter and I've made many since then. At least a dozen, I still have problems with the positions i hold my head using the computer, I get fatigue of the muscles and nerves that were cut, but no where near as bad as before. I've had some light memory loss and some processing challenges a few neurological issues but they have mostly passed. I'm good. I had surgery at Mayo (St. Mary's Hospital) in Rochester, Minnesota.
Aflac, what’s wrong with asking your mechanic how many alignments he’s done? That NS can’t answer the question directly and try’s to make you feel uncomfortable for asking…NO BUENO, guy! You are doing the right thing by asking the questions and searching out the right one. Keep looking at statistics about decompression outcomes. From what I’ve read most people get relief and or significant improvement of symptoms, some stay the same, and a few get worse. Each surgeon will have different outcomes, and other unaddressed, underlying conditions- like Ehlers Danlos Syndrome- can cause decompression failures. Each person has a different experience with surgery, but you need to know it can be a long recovery. You could be out of work between 6 weeks to a year. I went back to wrk at 2.5 months, but didn’t feel like a “whole person” again until 7 or 8 months out. I am waiting to have a cranio cervical fusion for cranio cervical instability(due to EDS), so I still have symptoms. But keep in mind that the people who are feeling great post op are probably out enjoying life and not spending time in a support community. If you had a support person would you be feeling different about surgery right now? Is there someone else whom you trust to help you? Do you feel that you still need to do more research?