hello christina,
make sure that you look into a myleogram...remmeber any foreign object into the subarachnoid space can cause arachnoiditis or cauda equina syndrome. but if you decide to just make sure that the dye isnt oil based or was it water based??? one or the other. research it and just make sure that you are informed.
as to epidural injections. i wouldnt do them again for anything. reember my very first post i tried them for many months and they never helped me at all. my mother on the other hand does get partial relief from them for about 2 to 3 weeks. however it is supposed to last 3 months. her doctor lets her do it every 2 months but from what i know that is the earliest the government will allow doc;s to do it. the main problem with this procedure is that it uses DEPO-MEDROL.. depo medrol is known to cause arachnoditis. the makers who hold the patent for this drug along with the FDA have notified hosp. and dr's not to use this medicine anywhere around the spinal cord, because of the risk of developing arach. i didn't know this until after i recieved them. anything that has special labeling and packaging for caution....? i also don't like the fact that dr's are allowed to use medicines for what is called off-label purposes. it is not right that they do not give , us, the patient the right to research and choose through informed consent. if i had been given this info ( that depo medrol could cause this horrible disease and that the fda and the makers do not approve it to be used ths way ) i would have never agreed to this procedure. as for rhizotomy? i had a procedure that was called nerve ablasion..which was a catrerization of the nerves of sort. basicly it takes the outside layers (sleeves) of the nerve off so that the actual nerves themselves become thinner and less likely to be pinched or impinged upon from the facet joints or vertabrae. i again had absolutely no improvemnt. i havent done alot of research about the SPECT but i will nad get back to you.
i think you really need to get into see new dr's and get some fresh ideas about what is the souce of your pain. as for me i have and will not give up my search until i have a diagnosis that myself and the dr feel confident about . as i said before everything that they have said that they see on mri they follow up saying.. but that shouldn't be causing you as much pain as what you have.
also ..nerve conduction and EMG. make sure that your test is complete. meaning that they test you legs and back and arms and neck. mine only tested 1 leg and every dr has said that it wasnt enough to make a decision about nerve damage. on the other hand the dr who did the test said it was enough. i will now need another test done. i have also researched this is conjuction with arachnoiditis, and it is not uncommon to have a normal nerve conduction and EMG and still have arach.
also do you have any autoimmune aspects. has your PCP or reg doc taken blood work to look at rheumotology..such as ANA or RNP or CRP or SED. if so ..the results? after these simple test is when all of my other test came. so maybe you need to start at step one. many arach sufferers have a double diagnosis of lupus, multiple sclerosis or mixed connective tissue disease. all of which i have been looked at or diagnosed with...lol then the diagnosis reversed
good luck and keep me posted
indiana mama
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hello christina,
June 21, 2010 - 12:51ammake sure that you look into a myleogram...remmeber any foreign object into the subarachnoid space can cause arachnoiditis or cauda equina syndrome. but if you decide to just make sure that the dye isnt oil based or was it water based??? one or the other. research it and just make sure that you are informed.
as to epidural injections. i wouldnt do them again for anything. reember my very first post i tried them for many months and they never helped me at all. my mother on the other hand does get partial relief from them for about 2 to 3 weeks. however it is supposed to last 3 months. her doctor lets her do it every 2 months but from what i know that is the earliest the government will allow doc;s to do it. the main problem with this procedure is that it uses DEPO-MEDROL.. depo medrol is known to cause arachnoditis. the makers who hold the patent for this drug along with the FDA have notified hosp. and dr's not to use this medicine anywhere around the spinal cord, because of the risk of developing arach. i didn't know this until after i recieved them. anything that has special labeling and packaging for caution....? i also don't like the fact that dr's are allowed to use medicines for what is called off-label purposes. it is not right that they do not give , us, the patient the right to research and choose through informed consent. if i had been given this info ( that depo medrol could cause this horrible disease and that the fda and the makers do not approve it to be used ths way ) i would have never agreed to this procedure. as for rhizotomy? i had a procedure that was called nerve ablasion..which was a catrerization of the nerves of sort. basicly it takes the outside layers (sleeves) of the nerve off so that the actual nerves themselves become thinner and less likely to be pinched or impinged upon from the facet joints or vertabrae. i again had absolutely no improvemnt. i havent done alot of research about the SPECT but i will nad get back to you.
i think you really need to get into see new dr's and get some fresh ideas about what is the souce of your pain. as for me i have and will not give up my search until i have a diagnosis that myself and the dr feel confident about . as i said before everything that they have said that they see on mri they follow up saying.. but that shouldn't be causing you as much pain as what you have.
also ..nerve conduction and EMG. make sure that your test is complete. meaning that they test you legs and back and arms and neck. mine only tested 1 leg and every dr has said that it wasnt enough to make a decision about nerve damage. on the other hand the dr who did the test said it was enough. i will now need another test done. i have also researched this is conjuction with arachnoiditis, and it is not uncommon to have a normal nerve conduction and EMG and still have arach.
also do you have any autoimmune aspects. has your PCP or reg doc taken blood work to look at rheumotology..such as ANA or RNP or CRP or SED. if so ..the results? after these simple test is when all of my other test came. so maybe you need to start at step one. many arach sufferers have a double diagnosis of lupus, multiple sclerosis or mixed connective tissue disease. all of which i have been looked at or diagnosed with...lol then the diagnosis reversed
good luck and keep me posted
indiana mama
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