Hi Rae,
Well, it didn't go well but I'm still optimistic. I think my anadomy is warped or something (ha). The doc and rep put the trial in on Monday but afterward when the rep was trying to fine tune the stimulator to my feet he just couldn't get it there without turning it way up. The point of insertion was at T-11. These two guys have worked together and done gobs of these SCS's (I checked it out). They said that they have never had a case where the T-11 insertion didn't work out great for the feet. So, I went back in on Tuesday and they simply pulled the stem down to where it wasn't fully extended in the sleeve and still didn't get the feet. Is this wierd or what. The best they could get was lightly down to the ankle but mostly around the knee level. So they took it out and will reinsert it on down lower with a new insertion point in about three weeks. They are totally confident that it will work with the new insertion but are totally dumbfounded that it didn't work at T-11. I'm hoping that you guys can tell me what your insertion point was and how it compares to T-11. If yours were on down to start with then I could perhaps have a few questions about these two guys that I seem to have a good relationship with. I hope SMAE will see this and I would love to hear from her. So I guess I'm on hold for about three weeks and I'll be in touch. - Lonnie

Hi SMAE,
Had some problems with my trial. Please see my note to Rae with some details. Since your feet were like mine I would love to hear what your insertion point was. Mine was T-11 and it didn't go well. I'm wondering if they shouldn't have gone lower to start with.
By now you undoubtedly have your paddles turned on and have a pretty good idea how they are doing. I have every confidence they will be fine since your trial went so well. I'll wait to hear and thanks much. It was great to hear from you. - Lonnie

Hi Lonnie!
So glad you came here with an update, thank you!
Geeze, I'm sorry tho that it didn't quite go the way you wanted!

Hopefully after the 3 week wait, they can get it where it needs to be....
We are all built a bit different, so who knows.....
The main thing is how YOU feel about the Dr who is doing your implant.
It sounds like you have good relations with these guys and that he is pretty confident in what he's doing.
We'll hope for the best.

I hope you are doing ok, now that they pulled the leads. I hope your pain level doesn't spike too high....

Hi Lonnie

So sorry to hear that the trial wasnt as successful as you hoped it would be. All I can say is that I have the stim in and I get sensations from my lower back right down to my feet. I cant tell you exactly where I have it in, but I did have a fusion at L4/L5 L5/S1 and I do know that my Dr said that he would have to go above this in order to put in the leads. But the incision is at the same level as the fusions or slightly higher but only slightly. I understand what you mean about them having to turn it up. I cant get much relief in my lower back, which I need, unless I turn the stim up QUITE high which is more painful than the actual back pain I do hope that you will get the relief in your feet the next time you go in!!

Take care Jackie

Hi Jackiey,
When I go back they will putting the trial in at the L-? level. I'm just sure that we will be successful with it. I'm not too upset with my team as they were sweating bullets and very apologetic. We'll make it the nex time. Sorry about your back. My brother has a similar problem and he's just waiting to see my results before getting involved with this. Neither of us had ever heard of SCS before now. Thanks for checking on me. - Lonnie

Lonnie,

I have been away because I've been recovering from the surgery and have been busy.

Mine is at T8-T9 and covers my legs and feet--all the way down.

You said they are going to try L something? I don't quite understand that... is it different for different people? Anyone know? If T8-T9 is my legs and feet, would that be every person's legs and feet as well?

Sarah

I also forgot something else.

When I did my trial, my rep had the stim turned all the way up as far as it goes, and I couldn't feel a thing. I finally did. Then after I woke up, I could feel it in my legs (the stimulation) but not in my feet. It took an hour after surgery for me to feel it in my feet. I don't know if it is because of the numbness or if it is for another reason. So maybe you should ask if that could be the problem--that they didn't give you enough time for your body to register the feelings? I don't know for sure--but that is what happened with me.

I have meralgia paraesthetica leg pain with neurophtapy pain in feet feet feel cold ache real bad I have the leg has been bad wearing cloths gives me pain any suggestion for me I am 57 yrs old had epedural for facet joint pain 7 years ago what can be done for me in pain what would help with pain so I could function

Welcome to NT!
I am so sorry about this painful condition you are faced with!
I hope you are finding your way around the forums here at Neurotalk.
I see you found the RSD forum. There are so many wonderful people there who can certainly comprehend the frustrations you describe.

Also, if you haven't found the Peripheral Neuropathy Forum, I'd highly recommend you check it out as well.
Here is the link to get you there:
http://neurotalk.psychcentral.com/fo...aysprune=&f=20

Hopefully you can get some good information there as well.....especially at the top of the page at that forum, there is a wealth of information regarding neuropathies and great suggestions and tips on how to deal with this awful condition.

Has your doctor recommended the Spinal Cord Stimulator?
Please keep us updated! I sure hope you can find relief for this pain. I can certainly understand your frustration.

Wishing you the best,
and I hope you are feeling 'at home' here at NT

Truly Caring
Rae

Hi Sarah,
Thanks for your reply and input. I will definitely be asking about the hour waiting time that you had. It wasn't quite that long when the rep tuned mine. They are really confusing me with the insertion point being at T-11. Since yours was T-8 & T-9 and had stimulation all the way to your toes then certainly I should have had it too from T-11. I wouldn't think that our physical makeup would warrent any different insertion point.
You didn't mention how you are doing after they put the permanite implant in. I'm sure it's working at least as well as the trial and I'm also sure that you are, like, on cloud nine with relief. I would love to hear how it's going. Also, I was also wondering what city your located in. I'm not going to give up on this regardless of the outcome of this trial that's upcoming. I may be looking for a new doctor.(ha) Looking forward to hearing..... -- Lonnie