[Angelina55]

I just started my trial on may 23, 2013 and I have had the worst back pain! I couldn't get out of bed for 2 days and I can barely get out of bed now. I am in so much pain, I am wondering if anyone else had a hard time recovering from getting their trial? The stimulation seems to make things worse. I think my leg is too sensitive for the buzzing sensation. I have CRPS in my left ankle/leg. I am trying to tough it out to see if I get used to it, but I just want it out! I want this to work so bad, but I don't think it is going to.

[Mark56]

Hello Angelina!

I am so sorry to read of the way in which your trial is progressing. You need to be putting all of the thoughts you expressed here into your pain diary the Doc most assuredly gave to you on which to keep notes during the trial.

If it is appearing your symptoms are worsened by the signal, you may not be one for whom the process provides relief..... and it is SO much better to learn it through the trial than to have gone through a radical implant procedure only to experience something unbearable. Best I can suggest is be in touch with your rep, because they surely should have given you their phone number so you could be in touch in case a TWEAK of the programs they gave you might provide that beneficial relief you had hoped for your trial. My rep gave me their numbers and I did talk to them during the trial. You might give that a go.

May all be well,

[Angelina55]

Originally Posted by Mark56

Hello Angelina!

I am so sorry to read of the way in which your trial is progressing. You need to be putting all of the thoughts you expressed here into your pain diary the Doc most assuredly gave to you on which to keep notes during the trial.

If it is appearing your symptoms are worsened by the signal, you may not be one for whom the process provides relief..... and it is SO much better to learn it through the trial than to have gone through a radical implant procedure only to experience something unbearable. Best I can suggest is be in touch with your rep, because they surely should have given you their phone number so you could be in touch in case a TWEAK of the programs they gave you might provide that beneficial relief you had hoped for your trial. My rep gave me their numbers and I did talk to them during the trial. You might give that a go.

May all be well,

I didn't get a pain diary. And my rep will call me tomorrow. It is hard because of the holiday weekend. I tried calling my doctor, but he was rude and of no use. Said there is nothing we can do for you. I will for sure tell my rep all of this tomorrow when he calls to see what he has to say. My biggest concern is how much my back hurts. I can't do anything to even try out the SCS with different things....going to store, walking, ya know? I have never been able to keep things in my body. I had to have the screws removed from both my ankles because my body rejected them. So I am wondering if maybe that is what is happening?

[Mark56]

I mean, after all, having Doc reply rudely after performing a trial implant JUST ON THE EVE OF A HOLIDAY WEEKEND is Really Awful! I pray your rep will be able to offer some glint of hope.

I don't know regarding the possibility your body reacts poorly to foreign objects within. Only a Doc who has a sympathetic understanding of your prior history and the current picture could give the medical opinion.

One thing I do know is the first day, at least, of the situation is painful due to the very insertion of the trial leads. Maybe, just maybe, you are experiencing a profound approach of this sort. The only thing which was in me for the trial was the embedding of two leads into the T8/T9 space in my spine as I am a lumbar and leg patient..... I do tell you in all compassionate responsiveness possible, the trial for me was not as painful from a hardware perspective as what you describe.

When you were in recovery after the trial procedure, was the rep with you at that time? Mine was there and working with me on the programming of the trial unit, a bulkier version of the actual stim generator which was worn about my waist in a Velcro secured belt. Now, when he was there, I was still very much feeling the effects of sedation so I pretty much felt no pain, but as the rep worked with me on the programming, we "dialed in" the programs so I could sense the effect of the stim, and I went home with it running.

The next day was a pretty sore day, but by day 2 and then day 3 I was crying.... and not from pain, but from the realization I was NOT feeling pain in my lumbar and legs. This is where our stories so dramatically vary. So, work that discussion with your rep today, just in case there is something maybe they can try. They may even be able to isolate whether the leads [which are so tenuously secured in you at this time just by a couple of stitches at your insertion point and GOBS of tape to try to hold it in place] could have moved at all, and may be needing thus to have their nimble fingers operating the computer.

Last of all, I will pray all will be well,

[Angelina55]

Originally Posted by Mark56

I mean, after all, having Doc reply rudely after performing a trial implant JUST ON THE EVE OF A HOLIDAY WEEKEND is Really Awful! I pray your rep will be able to offer some glint of hope.

I don't know regarding the possibility your body reacts poorly to foreign objects within. Only a Doc who has a sympathetic understanding of your prior history and the current picture could give the medical opinion.

One thing I do know is the first day, at least, of the situation is painful due to the very insertion of the trial leads. Maybe, just maybe, you are experiencing a profound approach of this sort. The only thing which was in me for the trial was the embedding of two leads into the T8/T9 space in my spine as I am a lumbar and leg patient..... I do tell you in all compassionate responsiveness possible, the trial for me was not as painful from a hardware perspective as what you describe.

When you were in recovery after the trial procedure, was the rep with you at that time? Mine was there and working with me on the programming of the trial unit, a bulkier version of the actual stim generator which was worn about my waist in a Velcro secured belt. Now, when he was there, I was still very much feeling the effects of sedation so I pretty much felt no pain, but as the rep worked with me on the programming, we "dialed in" the programs so I could sense the effect of the stim, and I went home with it running.

The next day was a pretty sore day, but by day 2 and then day 3 I was crying.... and not from pain, but from the realization I was NOT feeling pain in my lumbar and legs. This is where our stories so dramatically vary. So, work that discussion with your rep today, just in case there is something maybe they can try. They may even be able to isolate whether the leads [which are so tenuously secured in you at this time just by a couple of stitches at your insertion point and GOBS of tape to try to hold it in place] could have moved at all, and may be needing thus to have their nimble fingers operating the computer.

Last of all, I will pray all will be well,

My rep was with me in recovery and I was in pain. I told the nurse that I was hurting and she said you will just have to tough it out for a couple days. I didn't get anything to secure it to my waist, I have to hold the battery or wear something that has a pocket to put it in. I am pretty sure the leads did move because two of my groups don't work like they used to, but the other two I still feel in my leg. They never reached my ankle which has the most pain. It is hard to decide because I have noticed that I can walk a little better sometimes. But I can't walk or stand for very long because of the pain in my back. I just wish I had someone to talk to about it. It is hard doing this over a holiday weekend. I want to thank you for talking to me about this, I feel so lost and you are helping me feel better. Thank you so much!!! I was feeling like I was going crazy...lol

[Hannabananna]

oh Angelina....I am so sorry for your increased pain.
Thankfully Mark was able to ease your mind quickly.

I do not know your situation...I would sugest you reconsider the surgeon...and the surgery center!!
Oh and let your rep know although I would guess he already knows if he has dealt with him before.
Also I am a year and a half post op and I still feel like my body wants to reject the stim.
Beast of luck to you and you are in my thoughts.
johanna

[german shepherd man]

I was in the same position in 2008, its very frustrating. I agree with Mark seek another doc.
My stim has worked great, it does take some getting used to. I have a Medtronic unit with 6 programs I can change, each give sensations in different areas. I found one that suited my needs and have never changed it in 5+ years.
I also experienced extreme pain from the trial site leads, awful things hanging outside the body. As active as I am amazed I didn't rip them out. It may just be your body adjusting to it. As far as rejection, that may be possible but they do use inert materials which the body cannot see or sense. Talk to your rep and doc about that.
I hope things calm down for you, my stim gave me back a somewhat normal life, even under the extreme conditions that were upon me.
Hoping to see a positive update soon.

German Shepherd Man.

[german shepherd man]

for some reason I didn't see the post that removed your device, I am truly sorry it didn't work for you.
Hoping and praying that some relief comes your way soon.

German Shepherd Man.

[Angelina55]

Originally Posted by german shepherd man

I was in the same position in 2008, its very frustrating. I agree with Mark seek another doc.
My stim has worked great, it does take some getting used to. I have a Medtronic unit with 6 programs I can change, each give sensations in different areas. I found one that suited my needs and have never changed it in 5+ years.
I also experienced extreme pain from the trial site leads, awful things hanging outside the body. As active as I am amazed I didn't rip them out. It may just be your body adjusting to it. As far as rejection, that may be possible but they do use inert materials which the body cannot see or sense. Talk to your rep and doc about that.
I hope things calm down for you, my stim gave me back a somewhat normal life, even under the extreme conditions that were upon me.
Hoping to see a positive update soon.

German Shepherd Man.

I have thought of going to get a second opinion, but I honestly don't know if I can go through that kind of pain again. And the thought of how many things that can go wrong.... It just seems like anything that can go wrong in my life usually does.. Although, after getting it out my pain has been pretty bad again in my leg and I don't know why but my back is still sore. My right leg has also been hurting, which concerns me because the buzzing was going into my right leg when it wasn't suppose to. I haven't told anyone this because I was hoping if I didn't say it it would go away..lol but today after trying to get my house clean for my birthday party tomorrow it has been almost unbareable. I hope my pain doesn't keep me from enjoying my party.

[eva5667faliure]

happy birthday to you
happy birthday to you
happy birthday dear Angelina
happy birthday to you

enjoy your birthday!

someone who cares