Another update from the Cleveland Clinic
I just had the Spinal Cord Stimulator implanted at Cleveland Clinic (CCF) on Monday, August 2nd by Dr. Kapural and his team. I am very sore, way more than I was for the trial version, but I have taken into consideration that this time around the incision in my back is a little bigger, and there is an added incision right above my left hip for the hardware with a tunnel in between the two, under the skin, to connect. It feels like the worst back muscle cramp ever, but as my aunt says, you can stand anything as long as it is temporary, words to live by, seriously.
Next step, I am in the works to see a doctor in Mississippi to see if I am a candidate for a gastric pacemaker. I do not have full-on gastroparesis, but I do have a severe case of delayed gastric emptying, so we will see what happens. According to my GI at CCF, the doc in Mississippi is THE guy for gastric pacemakers, and one of the few that actually has a test to see if it works for you.
My PICC failed, and I am secretly pleased for all the wrong reasons, I just hated living that way, made me feel like a freak, of course I don't feel that way about anyone else who has one, just me...why are we so hard on ourselves? I am looking at a 1-2 day trial of an NG feeding tube that runs to my small intestine to make sure I can tolerate the J-tube feedings before the surgeon will schedule the surgery to put in a Roux En Y Jejunostomy feeding tube, it will take the place of the PICC, and it is more liveable than a PICC, less risk of systemic infection, I can swim, etc... I really just wish I could live without all of this stuff, but after going to CCF I have come to the harsh reality that this is all permanent. They have told me that at this point, we just need to try and control the symptoms, the damage to my vagus nerve is permanent, it cannot be repaired.
I'm trying to keep my spirits up, I have re-enrolled in paramedic class, I will only know if I try.
As always, I am here for anyone who is struggling like me, although I wish there weren't anyone else. If it takes me a while to get back to your emails, I apologize, I am not on here as much as I used to because of all my trips back and forth to Cleveland. I think I will be home for a while this time, I have to have my stitches removed in 10 days, but they said my local pain management doc can take them out, which is good, I am not up for an 8 hour one way car ride at this point.
Good health to all!
Jules
Next step, I am in the works to see a doctor in Mississippi to see if I am a candidate for a gastric pacemaker. I do not have full-on gastroparesis, but I do have a severe case of delayed gastric emptying, so we will see what happens. According to my GI at CCF, the doc in Mississippi is THE guy for gastric pacemakers, and one of the few that actually has a test to see if it works for you.
My PICC failed, and I am secretly pleased for all the wrong reasons, I just hated living that way, made me feel like a freak, of course I don't feel that way about anyone else who has one, just me...why are we so hard on ourselves? I am looking at a 1-2 day trial of an NG feeding tube that runs to my small intestine to make sure I can tolerate the J-tube feedings before the surgeon will schedule the surgery to put in a Roux En Y Jejunostomy feeding tube, it will take the place of the PICC, and it is more liveable than a PICC, less risk of systemic infection, I can swim, etc... I really just wish I could live without all of this stuff, but after going to CCF I have come to the harsh reality that this is all permanent. They have told me that at this point, we just need to try and control the symptoms, the damage to my vagus nerve is permanent, it cannot be repaired.
I'm trying to keep my spirits up, I have re-enrolled in paramedic class, I will only know if I try.
As always, I am here for anyone who is struggling like me, although I wish there weren't anyone else. If it takes me a while to get back to your emails, I apologize, I am not on here as much as I used to because of all my trips back and forth to Cleveland. I think I will be home for a while this time, I have to have my stitches removed in 10 days, but they said my local pain management doc can take them out, which is good, I am not up for an 8 hour one way car ride at this point.
Good health to all!
Jules
Jules RNY 10/30/2007
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