[fionab]

He didn't do anything with my cervical remote as he said I was causing the problem with my activities. He reminded me, AGAIN, that I was forewarned about the recovery time for this type of surgery and the amt. of time it takes for the scarring in process to occur. He said I had to give things a good 9 months, even maybe a year, before I can think I'm home free. He had just left an emergency session with a patient who'd pulled his/her leads loose, so he was pretty strong with me about not overdoing it as he didn't think I wanted to re-do the surgery...I heartily agreed.

He did reprogram the lumbar remote to take some of the stimulation off the abdomen area, hoping that's what's causing the nausea, but he said it's hard to get coverage on the lower back without it affecting the abdomen (he called it the "band" problem). The new program he gave me is helping with less stimulation in abdomen but now have lost some stimulation in legs/feet, which I don't like.

Again, he cautioned me that I'm to be patient and give all this time to heal and scar in. He reiterated that there will be changes going on during this whole process and that I will probably even find I have to change settings or programs when I move from, say sitting to walking, or walking to sleeping etc. I told him about my having to increase or decrease the stimulation, depending upon what I'm doing and he said it's to be expected and that I have to deal with it until the healing process is complete.

He came across a little strict, but in a caring way, as he'd just spent over an hour with someone who'd caused their leads to come loose, so this is one gal who is going to go easy and FORCE myself to become a very patient patient. So, it'll be ups and downs for a while, but knowing this is par for the course is reassuring. He did mention that inflammation can be a problem for quite some time, whether it's where the leads are scarring in, at the battery sites or even at the incision sites.

I did ask him about the ability to change the stimulation rate on the Boston Scientific remote. In the manual it shows a picture of what it looks like on the remote and in the picture it showed the setting being at 1200....I asked why mine is only set at 40 as 1200 was so far off from 40. The answer was that most of their patients only need it at 100 or less, and that it's RSD folks who need it turned up way higher, hence the ability to crank it up to 1200.

So, will continue trying to be a patient patient, esp. after seeing the carry on over the other patient who caused his/her leads to be moved...just ain't worth it to try to do something we shouldn't be doing!!

Sounds like you had an excellent session Fiona. All making total sense too. It's good to hear it from individual reps what their take on it is so to speak. Not surprised he was a bit strict having just had a patient who caused their own problem. Even though I got two new programmes I'm inclined to stick with the one I've used the most with the best coverage. It's interesting when he said about the abdomen being affected cos that's exactly what happens when I use my new progs it's soooo annoying and basically not giving me much relief.
Fiona you sound a bit like me , impatient . But it's for the best I'm sure. And hopefully this time next year we will reflect and say wow remember those bad days

Sounds like you too have a terrific rep which is so good. I do hope that you will be able to get some more relief though with the new programme

[edever34]

Hi! I cannot agree more about being patient in the heeling process-It was extremely hard for me too!!!! It has been over 2 years now since my Lamanectomy SCS and it really did take a full year to heal,so hang in there. Fondly-Carol

[Rrae]

We needed to hear that!

Your input is OH SO important!!!