Hi all, I miss talking to you kevin & helen so please let me know how you are doing. Thanks!
Also, very sorry, more than sorry to read bad news about kim.
And, to new people who have been diagnosed with arc or are looking for info there IS a plethora here BUT you know what? Your information, diagnosis, support or anything that you could offer, even to vent or rant MAY be the exact info or idea or the very hope that we search for! So, PLEASE SHARE!!! A new friend would be SO awesome!!
Now, my surprise. I have seen the same dr for 13 years for pain control. For 24 years i had arach on my MRI's & no one told me until a new neurosurgeon told me last fall but even then JUST that i had it, no info about it. So, i have searched for an arach dr in Texas for a year. Ive been in contact with Dr Burton, Dr Aldrete, Dr Tennant & lo & behold MY very own dr was "holding out on me"!!!!! My last visit he spilled the beans & he knows everything, yes, everything about arach! He said I found out last fall but he has known for 13 years, since i walked in the door with my recoreds & #1 he never had the courage to tell me such a cruel diagnosis when i was doing well & he was watching me so carefully so no need to throw me into a dreaded depression! #2 He has been studying arach ever since i became his patient & said he did an EMG himself & knew i had severe nerve damage 5 years before i ever complained about the 1st feet symptom! My arach extends from L3 tethered cord at L1 caudally or to tailbone. So, Go Figure.... i had hit a gold mine & never knew!
We discussed ketamine coma, peripheral nerve field placement scs, morphine pump & he says that it is too early for any of these because i am at least 50% pain relieved with oral & patch opioids. So, for now i sit & feel my spinal nerves,cauda equina die slowly. Take lyrica for the neuropathy, narcotics for pain & try as hard as i can to "suck it up" & "be normal for me" because i cant run away from the condition, i mean we are stuck in our body so i pray & pray that my future wont be as bleak as my imagination can make me see!
Thank you for reading this long post & please let me hear from you, i need support from those that "know"!!!!