Neurostimulator trial unsuccessful - feeling very down

Hi everyone,

I hope you don't mind that I vent here, but I'm not doing so well. I finally had my neurostimulator implant trial last Friday, and I'm getting it out today. I had mine for pelvic pain, but not the type that goes directly to your bladder nerves. I have IC and this is commonly done, but since I have other pelvic pain, they went the other route that is supposed to cover more of your pelvic nerves. This has been kind of a nightmare for me! When they were doing the implant and seeing where I was feeling it, I did not feel it in my pelvic area at all. I felt it in my butt, back, legs, and slightly underneath in my vaginal area. But nowhere near the area where I have my pelvic pain! What got me was my doctor says during the procedure, I told you that might be the case, we discussed this. I know for sure, he NEVER told me this!!! Yes, he had said that it works for some people and not others, I was totally prepared for that. But he never said that it wouldn't affect the nerves in my pelvic area. In fact he had told me the opposite, very clearly several times! I could tell by the way he said it in the procedure room, like he was making a point of it, that he knew he hadn't told me that, was just covering his behind!

Anyway, so I'm not really in a flare at the moment so its hard to tell, but I don't see that it is effecting my pelvic area at all. And I really don't get the point of it if it doesn't even touch that area?! I could see how it would work for back pain or even bladder pain, since it directly touches those nerves (if that's where they place them.} But had I know this is how this particular one works, I don't think I would have done it! On top of it not helping I have had excruciating pain in my lower back and in the area where the leads are implanted. It is very, very low...lets just say in a very sensitive area and if I have to sit up for more than a couple of minutes, or ride in the car at all, the pain is terrible!

So after going through several days of this, I am feeling a bit down. I think the pain on top of not being able to do anything plus not even being able to shower, when its horribly hot outside, is just making me feel really blue. Plus I have a person at work that is basically harassing me, and the stress of that is really getting to me. Even though it was stressful at times, I always felt really good about my job and everyone I work with. Now this person has caused me complete hell at work! My bosses know about it, and they know this person isn't doing a good job, but don't want to deal with it because they don't want to go through the hiring and training process again. They literally told me that, so I just have to deal and I don't think that's right. I'm at the point where I'm ready to walk!

Anyway, sorry to just complain on here, just could really use some words to help pick me up right now!

Aw, so sorry to hear it wasn't helpful MsLouise. The doctors behavior stinks too! I wish I could think of something to say that might cheer you up, but, I've got nothing as the saying goes.

Have you tried those cooling towels? I finally got one and I LOVE IT! Of course, it's not the same as a shower but it does help keep me cool. Yesterday was soooo dreadful, I did what I had seen my mom do hundreds of times...stood at the kitchen sink and used a washcloth and cold water for 'a bird bath'. That's what she used to call it! It helps!

Sorry too to hear that you have a 'stinker' at work. Try not to lose sight of all of the other workers that made your work life pleasant.

Treat yourself, when ever possible.

Thank you so much for your responses. I know there are no words that can magically make it all better, but knowing I'm not alone and that you all are supportive does really help.

I just came from having the trial implant removed and physically I feel so much better just having that thing off me! I'm not mad at my doctor, especially since overall they have been wonderful, I can't hold this one thing against him.

I know I will get to a hopeful place again, I'm just not there at the moment. What can I say...it's been a rough week! Hopefully next week will be better!

Hi Louise,
So sorry you're having such a rough time of things with the neurostimulator trial. Unfortunately, that does happen. When I had my trial, we got it right up to the border of C1/C2 and I had great coverage. But then there was swelling from the trial & we weren't able to get the permanent leads as high. It took 11.5 months to get it reprogrammed to cover the areas I needed covered. I was beyond miserable for that year, but no one was willing to explant the leads. On top of that, I developed new pain where the stimulator was implanted (right flank). That never went away & even though they explanted the device after 8 years due to a massive infection, I still have some pain at that site. It improves day by day, but it's definitely in more pain than what I experienced down there pre-op.

On the positive side, we found that doing RF treatments seem to help & without the downside (only downside is that it takes a month or so to kick in). Is that something you've tried? I don't know what nerve(s) are involved in your pain, but I know they can do RF for the vagus nerve.

Hope your day improves ... and that your bosses change their mind about your lousy co-worker. ;)