Just got my trial SCS on May 23
 

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.

Hi Angelina
 

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, :grouphug:

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?

So Sorry about THAT Angelina
 

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, :hug:

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

Imho
 

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

They removed it today
 

Well, I went in to have them check the leads to see if they moved and they decided to take it out. I am dissappointed of course, and esspecially since it is always hard to hear another doctor say they can't do anything for you and send you on your way. But I also believe that everything happens for a reason, so I know that I will get through this! I just have to keep my head up. Thank you all for your support!

Sorry this didn't work out for you Angelina, I know you are disappointed. But at least you tried it out and there is no questioning the "what ifs" on this. Keep your chin up.

Nanc
:hug:

I am so sorry Angelina
 

For it seems Doc was predisposed to "throw in the towel" from the start. Is this an individual who cares for patients...... or merely chalks up known success stories because they are the simple easy ones from the get go. Perhaps a second opinion?

Prayin for ya, :hug:

Yes, that is true. And I feel like I really did give it a shot. I tried all the settings and kept trying it the whole time. I kinda wish they would have let me keep trying it until thursday like I was supposed to though.

Yeah, it was weird that he decided to take it out. I didn't expect that. He asked me if I had gone to the emergency room after I had called him, which I don't understand why. I am pretty sure he was mad at me that I didn't go. But I didn't think he really wanted me to go. He had just said it once. Like I shouldn't have called I should just go to the ER if I was worried. But he didn't seem worried so I didn't go. But he kept bringing it up like he was upset that I didn't go. So i am wondering if that is the real reason he took it out...because I didn't "listen" to him. He said that it wasn't hitting my ankle so we should just take it out. And it doesn't sound like it is working anyway. But it would have been nice to try it out for a couple more days. I told the rep that it seemed that I could walk better, but with my back I couldn't really try it out yet. So I don't understand his reasoning for taking it out early. I thought the rep was going to change the frequency (I think) so it wouldn't pulsate so much. I think that would have helped alot. But now my right leg is starting to hurt really bad. It has woken me up. :( Hopefully I just slept on it wrong. I am hoping that the fact that it was going into my right leg doesn't hurt it.

i am so so sorry
you endured so much
in such a short time
i find it hard to swallow
the behavior of the
surgeon should be marked
in a way patients can beware
i am so so sorry
i have my own story
opted not to get a pain pump
just another surgery
and my deal is i had
ENOUGH OF THE BULL TURD
these doctors take an oath
i believe that just maybe
the medical association should
have some kind of grading system
keep them on their toes
not on just their performance
but mostly on the pre and post
behavior i don't care how busy they are
or that the patient can send in some
kind of survey to the board
AND SOMEBODY DO SOMETHING
MY SURGEON STILL HAS NOT RELEASED
ME AS A PATIENT AS I HAD TO REMOVE
MY BREASTS
CANCER IN MY RIGHT ONE
OPTED TO TAKE THEM BOTH OFF
MY ANNIVERSARY IS 1-9-12
PLEASE HAVE YOUR EXAM
I FOUND MY OWN
HE NEVER CALLED ME TO FIND OUT
WHY I HAVEN'T RETURNED I
went for a third opinion traveled to
NYC Hospital for Special Surgeries
and prognosis is bleak for my future
however i too pray for a miracle
and too believe in JESUS CHRIST
AND ALL FOR A REASON
AMEN!
I AM SO SORRY YOU HURT
MAY HE KNOW WHAT IT FEELS
LIKE WHEN SOMEONE PULLS
THE RUG UNDER HIS FEET

SOMEONE WHO CARES

Hi Angelina
 

Geezum pete, I am so sorry your trial went the way it did. I'm also disgusted with that doctor! :eek: I have a few choice words to say about him, but thankfully this forum has a built-in edit system.
Some doctors have such high egos (aka MINE :rolleyes:) that they get on the defense whenever their handywork goes wrong.

I'd go for a 2nd opinion with a Dr who remembers his hippocratic oath.

Caring,
Rae
:grouphug:

hang in there Angelina55
 

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. :)

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.

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.

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

enjoy your birthday!

someone who cares

Have a Very Merry Real Birthday
 

From me, to YOU!

:Birthday: :hug:

Celebrate. Celebrate. Dance to the music!

Happy Birthday Angelina!:

Sandy Kay

I am sorry about your doctor. That's terrible. It really does seem like you might need a second opinion, but I can understand the not wanting to go through the pain again. I have two scs's and both were painful. They were worth it for me, but in your case I would say it wasn't. My reps were also great working with me. Even now, when I'm dealing with some battery issues and earlier last year when I had to have a revision due to a fall. Anyway, I hope you find some relief soon. So sorry things didnt work with the scs. Hopefully another option can help ease your pain.

:hug:

TK