IPG problem, I can't lay down on my back.
Posted , 3 users are following.
Info: Male 65 yrs old back issues/pain for many yrs. Did the PM deal for many years. Finally had a couple of surgeries that worked for a while. Now they say there isn't anything more they can do. Inoperable back, lumbar, thoracic. Hence the BS/SCS. Major excruciating pain in right side sciatica and full lumbar to the point of not being able to walk. I had a paddle inserted in the T-8-9 area for a one week trial on 6-6-18. It was awesome for the trial period. Zero pain in sciatica and lumbar areas.On 6-14-18 the IPG was implanted, at which time I was asked to join a study research group. I agreed and they, BS proceeded to reprogram my IPG. Since that time everything has gone to hell in a handbasket.
Back to 100% pain as prior to the implant.I will continue with these other issues as they are attended to.
My current concern at this time, however, is this.
Every time I try laying down, within an hour whether asleep or not. I end up in severe pain just below and to the left of the implant and it's getting worse.
The implant is in the upper left flank of my back, about an inch or so below the ribs. After laying down for a while on my back and then trying to roll my body or lift my left leg, I get excruciating pain just below and a little toward the hip. I wake up screaming.
My wife tries helping me to no avail. It happened again two nights ago. I tried sleeping in the bed and had a soft bed pillow tucked under my butt and lower back. just enough to keep me off the IPG.
It was so bad this time that it took a half hour or more for me to be able to get up. I had to finally roll off the bed onto my knees and keep my upper body on the bed. My wife had to get a kitchen chair for me to push up on and then also lean on the nightstand to get up. It still took ten minutes to get stable enough to move at all.I need to know if anyone else has experienced this problem. Also what your solution was.
I'm having many other issues I listed under my info. For now, this is my main concern.
Thank you in advance for any help or suggestions
0 likes, 2 replies
Seafarer123 rick10519
Posted
Sorry to hear about all of your issues, including with the SCS. My SCS is implanted in the fatty part of my upper buttocks, and causes no problems at all. Perhaps they can re-implant it in your buttocks, which is where I thought they typically opt to implant it - I'm surprised to hear they put it up just underneath your ribs, there's so little free space there.
As for the trial working and now the permanent IPG not, it's my understanding that there are dozens if not hundreds of programs that can be tried for you. When I first had my permanent IPG inserted (along with a paddle, like you), Program 1 on the remote gave me tremendous relief whereas Programs 2 and 3 on the remote did not. Not only did Programs 2 and 3 let all the pre-existing pains shine through it also amplified them. So my rep is only experimenting with variations of program 1 from now on.
If you were in such severe pain prior to the permanent implant that the loss of the success you saw in the trial period imposes severe pain in you, perhaps you were not a good candidate for the research study group. Clearly in the study group they are going to experiment with the settings, and if you can't tolerate the loss of the pain relief you should ask to be withdrawn from the study group and returned to the initial settings that worked during the trial. I doubt they would say no and if they do, be insistent.
rick10519 Seafarer123
Posted
Hi Seafarer, thanks for your response.
The implant isn't under the ribs. It is probably an inch to an inch and a half below the ribs.
It seems to be in a good fatty area above the belt line. This seems to be where they put most of them unless someone has a specific area and the Dr. agrees.
They are talking about having to relocate it, but they want to wait until I'm 12 weeks out from surgery.
The problem is there isn't any improvement and it is getting worse. I only try to lay down every few days.
I believe I'm going to have to insist on them getting me in and start trying to figure this out.
I don't see any reason to wait as it is getting worse instead of no improvement.
Here is something that I just remembered and may be of some significance.
About a week and a half after the implant, I tried laying in the bed on my left side. When I did I had a horrible taring/burning feeling at the IPG site. It felt like I had ripped all the stitches out. I had my wife look at it but it seemed fine. I did mention it to the PA at the surgeon's office on my two week follow up on 6-28. They checked the IPG and he felt that it was still solidly mounted and stable in the pocket.
As for the research/study group, I did insist on getting out of 3 weeks ago. It wasn't easy though. BS seems to want you to stay in it and kept suggesting that we just keep tweaking the programs. I flatly refused! I told them it's my life that they're messing with and I'm the guy who is suffering not them.
They did start changing my programming. They started off by giving me 3 that I chose with different areas and sensations along with intensity. They added one of there own to making it 4 programs.
After two weeks of still having full, pain I once again insisted on meeting and having the programming done. This was on August 6th. They once again gave me four new programmes, and still no good results.
As a side note, I have insisted that they go back to my initial settings from the trial. They insist that that won't work.
There reasoning is that due to all the surgical swelling the programs would now be ineffective and would have slowly changed after the trial.
They insist that if I was pain-free during the trial, that they should be able to get back to that point.
When though, and how long do I have to endure this debilitating pain.
I truly don't feel as though my needs are being taken care of.
It takes at least two day's for my rep from BS to get back me and then they say well they can't see me for a few more days.
Very frustrating to say the least.