hi, i am new to my diagnosis & i have soo many questions, but my 2 big ones are, is the decompression surgery actually considered experimental? and if untreated, can you actually die from it?? I am waiting on my 2nd opinion appiontment, but am going crazy googling these things. any help is so much appreciated!
thank you both for your answers & for your support, i didnt even link my sleep apnea to this, every bit of info helps
Mandy said:
Hi jessica,
I am also new to diagnosis, and the information on the internet can be very scary...but most information agrees that somewhere between 70% and 80% of patients improve with surgery. It appears decompressions were first performed in the 1930's: http://www.ncbi.nlm.nih.gov/pubmed/21626007, so I don't believe they could be described as experimental at this point, although there are differences of opinion on what the most effective method is.
Here's a great presentation, you might have already seen it: http://www.conquerchiari.org/documents/presentations/OVERVIEW%20Pre...
It discusses the questions you have brought up, along with a lot more information you may or may not have already seen.
Take care,
Mandy
i have low blood pressure. i have seen 1 ns, but am trying to find another for a second opinion. i liked him, but the hospital he works out of apparently rarely deals with these surgeries, so i dont think im going to go with him. he has linked my migraines, my unexplained episodes of extreme nausea/sweaty/faint feelings, sudden intolerance for alcohol with this. i just noticed mention of scoliosis from this site. i found out i have that years back after routine tests after a car accident
Beeba said:
Just looked at your profile. I think you may find a great deal that yo may chalk up to chiari. Only because yo mentioned passing out please research dysautonomia. Do you have any issues high or low? And just because you should always look at all related conditions are you double jointed or hyper flexible? We can go from there to the obscure but these two seem to be strongly related. Have you seen ns? And was any measurement given about herniation or discussion of having a fluid flow MRI? We will get you directed but some specifics about symptoms and testing may help. The sleep apnea is very serious - do you have any other factors that could have contributed to this? Take a deep breath and get some sleep. You have probably had this for sometime or born with it - so in general it would be a unique case that would be highly emergent. We have those but they are certainly more rare.
beeba, thank you foryour help. its nice to know im not alone
also, the pain in my left arm is so bad, my doctor put me on lyrica & its making me very shaky. not sure i will stay on it. not even sure if its helping yet. i read online that it may be the begining of paralysis. do you know anything about that?
jessica said:
i have low blood pressure. i have seen 1 ns, but am trying to find another for a second opinion. i liked him, but the hospital he works out of apparently rarely deals with these surgeries, so i dont think im going to go with him. he has linked my migraines, my unexplained episodes of extreme nausea/sweaty/faint feelings, sudden intolerance for alcohol with this. i just noticed mention of scoliosis from this site. i found out i have that years back after routine tests after a car accident
Beeba said:Just looked at your profile. I think you may find a great deal that yo may chalk up to chiari. Only because yo mentioned passing out please research dysautonomia. Do you have any issues high or low? And just because you should always look at all related conditions are you double jointed or hyper flexible? We can go from there to the obscure but these two seem to be strongly related. Have you seen ns? And was any measurement given about herniation or discussion of having a fluid flow MRI? We will get you directed but some specifics about symptoms and testing may help. The sleep apnea is very serious - do you have any other factors that could have contributed to this? Take a deep breath and get some sleep. You have probably had this for sometime or born with it - so in general it would be a unique case that would be highly emergent. We have those but they are certainly more rare.