oh my goodness indiana mama, i am so sorry to hear that things took a turn for the worse after the surgery. i dont know much about that surgery, but i do know that i think that if what we have is caused by the epidural attempts, i dont think there is any surgery that will help it. i am considering trying epidural steroid injections soon but as they didnt help you i am not getting my hopes up. have you tried neurontin in a cream form? it has helped me a little bit. but since your pain has spread so much it might not be of any use to you.
you are very brave for going through with the surgery. just remember, you are doing the best you can in each moment you have, so every day is a new scale of what you can and cant do. im sure that probably doesn't help much since you are in so much pain and have tried so many more things than i have. your pain also sounds worse than mine. from what i have heard and researched on arachnoiditis, i dont think it is very commonly caught on MRI unless it was a huge huge level of damage to the nerves, where as the epidural pokes are so minute that it is most likely not going to be caught on MRI or anything. i wonder if there is any hospital in the US doing studies on it or something. i have kind of given up looking at this point. i usually look for a while, get overwhelmed and frustrated and take a break from it for a while. i have to find a new pain doc, too, because i wasnt paying enuf on my bill or something. the nurse/office manager was harassing me and i finally told her it was not ok for her to treat me that way. but now i have to go through the process of the new doc search etc and although im not looking forward to it, everything happens for a reason so maybe the next one will actually help me. i wish there were more woman docs, i feel like they would be more understanding and empathetic.
are you pursuing a lawsuit? i am, although i also had to fire my lawyer a few months ago because he wasnt doing anything on my case and i only have 8 or so months left to be able to sue the doctor. its super hard to find a lawyer, too, and its so emotionally draining and hard to tell the story over and over. some times i just want to give up on that part but since i cant work anymore i have to at least try.
my back pain is spreading as well, up higher and into my rib cage and now i am getting pain and numbness in my right hand, i cant even open jars or hold my arm up for more than a few seconds and it feels like its going to fall off. i dont know if its related but i would jnot doubt it. i am also thinking a lot about having another child, or wanting to, but i am so afraid of being bedridden and in pain while pregnant, not to mention there is no way id ever get an epidural again. i dont know if i will be able to have another child, but i will adopt if i decide i cant carry another. it is sad but it will be ok.
there is a website called "healingwell.com" and there is a section for people with chronic pain. its a place to connect with other people who are in pain like us and i dont go ther too often but when i do it helps me get out of the depressed mode and realize that this is real and it is important and there is support out there. you should check it out!!
look forward to hearing from hyou again. i am purplehaze_ck on healingwell if you want to chat there sometime.
blessings to you!!! you are an amazing woman going through a very hard thing, but you will make it through and answers will come!!! take care and let us know how you are in a week or two.
christina
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oh my goodness indiana mama, i am so sorry to hear that things took a turn for the worse after the surgery. i dont know much about that surgery, but i do know that i think that if what we have is caused by the epidural attempts, i dont think there is any surgery that will help it. i am considering trying epidural steroid injections soon but as they didnt help you i am not getting my hopes up. have you tried neurontin in a cream form? it has helped me a little bit. but since your pain has spread so much it might not be of any use to you.
you are very brave for going through with the surgery. just remember, you are doing the best you can in each moment you have, so every day is a new scale of what you can and cant do. im sure that probably doesn't help much since you are in so much pain and have tried so many more things than i have. your pain also sounds worse than mine. from what i have heard and researched on arachnoiditis, i dont think it is very commonly caught on MRI unless it was a huge huge level of damage to the nerves, where as the epidural pokes are so minute that it is most likely not going to be caught on MRI or anything. i wonder if there is any hospital in the US doing studies on it or something. i have kind of given up looking at this point. i usually look for a while, get overwhelmed and frustrated and take a break from it for a while. i have to find a new pain doc, too, because i wasnt paying enuf on my bill or something. the nurse/office manager was harassing me and i finally told her it was not ok for her to treat me that way. but now i have to go through the process of the new doc search etc and although im not looking forward to it, everything happens for a reason so maybe the next one will actually help me. i wish there were more woman docs, i feel like they would be more understanding and empathetic.
are you pursuing a lawsuit? i am, although i also had to fire my lawyer a few months ago because he wasnt doing anything on my case and i only have 8 or so months left to be able to sue the doctor. its super hard to find a lawyer, too, and its so emotionally draining and hard to tell the story over and over. some times i just want to give up on that part but since i cant work anymore i have to at least try.
my back pain is spreading as well, up higher and into my rib cage and now i am getting pain and numbness in my right hand, i cant even open jars or hold my arm up for more than a few seconds and it feels like its going to fall off. i dont know if its related but i would jnot doubt it. i am also thinking a lot about having another child, or wanting to, but i am so afraid of being bedridden and in pain while pregnant, not to mention there is no way id ever get an epidural again. i dont know if i will be able to have another child, but i will adopt if i decide i cant carry another. it is sad but it will be ok.
there is a website called "healingwell.com" and there is a section for people with chronic pain. its a place to connect with other people who are in pain like us and i dont go ther too often but when i do it helps me get out of the depressed mode and realize that this is real and it is important and there is support out there. you should check it out!!
look forward to hearing from hyou again. i am purplehaze_ck on healingwell if you want to chat there sometime.
May 15, 2010 - 10:20pmblessings to you!!! you are an amazing woman going through a very hard thing, but you will make it through and answers will come!!! take care and let us know how you are in a week or two.
christina
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