Quote:
Originally Posted by nanaz
I am beyond miserable.
Tuesday started my SCS Trial. Dr.'s orders to take it easy Tuesday & Wednesday. The first 48 hours were fantastic! My pain level was reduced to a 4! Very rare does my pain go below a five.
Thursday morning it went downhill and it hasn't stopped. The hip, bumm and calf muscles feel as though they are ripping off the bones. Sleep is trying to find comfort or relief, so the remote is getting a workout! I am on restrictions so i haven't done anything to have jacked it up like this.
It brought me to tears on Thursday. Decided to call my Rep. from Boston Scientific. Hopefully, he would have a suggestion or better yet be able to program a tweek. No such luck.
He said since my pain level was a 4 the first two days proves the stim is helping. Numerous times I told him, yes the first two days were great. Being on restrictions, taking my medications and hardly doing anything played a major roll in keeping the pain tolerable.
He asked what my current pain level was. I said 7/8. He asked i turn off the stim, while we talked. A few minutes later, he asked for my pain level. My answer was 7. He responds, "see it is working. You were just a 7/8, now your just a 7.”
Wow....I didn't know we split numbers so closely! The 7 vs 7/8 certainly had no difference on the intense pain I was feeling.
Then he said, "even with a stim, you will have good days and bad ones."
Have I totally misjudged this unit and what its to do? I can't think straight. I'm overwhelmed. I hurt.
Any advice to set me straight? Have I totally lost it?
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Nanaz,
I had mentioned previously I had a failed trial.
My rep, immediately following the trial procedure while still in the hospital, did some reprograming. I was so worn out from laying on the table for the trial with the rep. and my PM doctor asking is this better; then that; etc., I could hardly deal with the pain. Was glad when we were through and was off the operating table. After several attempts, it appeared he had reprogramed something that seemed would be okay. I went home from the hospital. The next day I was really having some issues;
Like you, i called my rep. It was the weekend so he said he would meet me at the Pain Management doctor's office on Monday. We met there the upcoming Monday. He tried many different programs; nothing worked. He left the room; then my doctor comes in and says we are going to stop the trial and remove everything. My trial was over. My REP NEVER even came back to say "good bye". He was not getting a sale.
Prior to doing the trial, we were best buddies having a lot in common. We were two happy campers; then the "boom" was lowered. NO SALE!! No Good Bye.
Several weeks later my doctor suggested another trial; I declined. Not sure how much of a medical background the rep has to make decisions like being in an operating room; especially when the permanent implant is being done and making the final decision in some cases when there is a lot of scar tissue from other surgeries; and maybe only one possible lead to be put in.
There have been times noted when the rep makes the final decision with the Neurosurgeon telling the rep of the ability to only implant one lead; and the rep. says to go ahead and do the implant anyway. This is already starting out with some strikes agains success of the implant.
I can only tell you of my experience and decision not to go ahead with another trial since I already knew I didn't want to deal with the recovery of the implant; leads to spinal cord area, as well as a pocket incision to put battery in, but also the way the rep left that day in the doctor's office when he was unable to reprogram worried me a rep might not be there when I needed him/her. I'm sure there are some very reliable reps; but I wasn't going to take any chances. For me another trial was not an option. I had only done the original trial because my Pain Management Doctor mentioned a number of times about doing a trial so I decided to finally get it done.
Yes, I am on pain medication, most likely for life. My PM had warned me there was a good chance even with an SCS I would still require meds; just not as much.
I sincerely wish you the best whatever decision you make.
Gerry