I came here looking to find anyone who might be going through the same side effects I am. Misery loves company! I am still not at the point I was before the surgery and I have to wonder how much longer I have to wait before I am happy that I had this procedure done. Usually, it helps the nerve pain running down my legs, although it does nothing for the strong pains in my back or the nerve pain running up my back into my neck and head. Other times, I turn it on and it hurts so badly, I turn it right back off. There are also other side effects that are a little personal and might be embarrassing or offensive to some people, but I believe this is a medical site, right? It is difficult to urinate - sometimes taking up to and over an hour even though I feel as if my bladder is going to burst. I gave up even thinking about standing to urinate a few days after my implant, although, I have had to sit for so long waiting, my legs go to sleep too. Also, um, being a man, the end part of sex, (if you know what I mean), doesn't happen very often either. It is frustrating for both me and my wife. She has started thinking it's her - like I don't find her attractive anymore or it's not good enough. I've tried telling her that it isn't just her - I have trouble with "getting there" by myself. Between the pain that I am still feeling, despite the SCS and all the narcotics they have me on, my depression has gotten much worse and I don't know how much more I can take. I'm hoping that if there is even one person out there who can relate to even some of these effects, it might make me feel a little better. I've read hundreds of posts on this site but can't seem to relate to most of them. Anyone?

Oh dear,I had someone the same complaints as you in the urinary and sexual area even though I am a woman. My husband and I were frustrated as well. We have found turning off the stimulator about an hour before helps. The con of that is planning it basically. I have found it is getting better as time goes by. Well, I have two, and I found incredible coverage in the beginning with the leg stimulator(the original site of RSD/crps), over time it has gotten worse. The arm stimulator is great, but it was caught at stage 1 instead of stage 3. Anyhow, I like you expected to be weaned off of all my meds by now and it just hasn't happened. In fact, I have actually tested + (through examination only) for MS. The best way to dx is MRI. I said I wouldn't remove and replant 2 scs's to put it in my chart fr a definitive dx. Just give me the med to feel better. Anyway, I hope things get better. My higher (C2) scs gives me neck relief. My thoracic doesn't go any higher than hip, and then it has to be cranked up where I can barely walk. I hope things get better. I hope someone has better answers for you. I do sympathize having some of the same complications even though I'm the opposite gender.

What does the doctor say and what is the battle plan. For what it is worth, my surgeon told me he is not surprised at 'glitches' at five weeks out but not five months. You deserve some answers and a plan. Prayers and best wishes.

Spiney

It just helps a little to know that I am not alone in my . . . . problems. The stimulator does not seem to make any difference whatsoever in either my urinary or sexual problems. This almost seems like a side effect of having the surgery itself. Spiney - my surgeon does have a plan. Basically, I start physical therapy/rehab in June. I was in a car accident back in '03 but made what I thought was a full recovery. The accident was bad enough to leave me in bed for several months followed by a year of rehab basically learning to walk again. My surgeon says that my gait is off and that I am walking - when I can walk - very incorrectly. Incorrectly? I get from point A to point B, I consider that walk a success! He wants me to get my muscle memory retrained properly so that I walk, stand, sit, and even lay down "correctly". Anyway, once the therapy is complete, it's back under the knife for me to have L-1 and L-2 fused, then more recovery followed by more therapy, then have I think it was C-1 and C-2 fused followed by more recovery. Not sure about therapy following that. Anyway, he says that he can have my back fixed and in about 5 years, I'm going to be better than where I am now. He did admit that he could not predict what was going to happen with the nerve damage and pain. That's the plan!

My first SCS was the bi leads and the sensations went down both legs and BETWEEN my legs .. but not in a good way (othewise I would be one happy lady) ...I didn't like the sensation .. to get relief I had to turn it up so much that I walked liked Forrest Gump.

As for sex .. it's almost as though I've lost all feeling "down there" ... even now I don't have a SCS .. but I think a lot of that is due to medication as much as anything else.

I had a paddle lead fitted which worked amazingly well. The sensation went down one leg (the onle it should, before you ask) and was just there in thebackground as an additive to my meds.

I've since lost that due to infection and will never have anything that has to do with having my back opened up again as the scar tissue is not good.

You can always satisfy your wife other ways ... and to be honest, a cuddle is siply the best to show I'm wanted.

I'm stuck on medication at the moment .. and because I am trying NOT to increase the dose, this means I spend quite a lot of time some days, in bed. Today I managed to get up and go on my mobility scooter to the post office. Others I try to get out of bed and think that the pain in my back means my back is going to break because it'snto strong enough to hold my top body up.

When I initially explored SCS my Surgeon was straight enough to say that this would do nothing for my back pain, only my sciatic pain and if I thought it would help my back pain then he would not even consider me having it. I hhope that bit helps a little.

You're not alone .. someone out there is going through some of the same things .. all I can say is ...

See that chair near the fire? That's mine that is!

Saffy x (Karen)

Hi there and welcome
Does not sound right to me that at 5 months you have these problems…I am only guessing here from things I have read…your leads may have moved a bit and are touching other nerves causing the pain; your problems with urinating and (please forgive me) a happy ending. I too had horrific pain at 5 months tho all my leads were fine…I just had to go back to work at 100% or lose my job.
I have had problems after surgery urinating as my bladder does not wake up from the anesthesia...there is a drug that can help. I have not experienced any sensation difficulty with sex…I am fearful to be “robust”…I am so fearful of that pain… I do not have a partner to experiment for options either.
My experience is my SCS feels like an alien in my body…I get a bit of relief from it…I really was not a candidate for it. I have not recovered well and I am at 13 months now….
I also have pain on my right side compensating for the injuries of my left side. My gait was changed and my hips and muscles adjusted to carry weight abnormally as I had surgery on my L knee …this pain is now showing up 3 years post auto accident. I find massage and yoga help keep my structural integrity in place.
One more thought….a SCS prevents MRI’s so I wonder why your doctor did it knowing you have so much more surgery to do,
Anyway…Mark and Rae will be along soon...and I am sure you will have much of the support and interest of this group.

Johanna

Hi,

Read something that confused me above.

to say that this would do nothing for my back pain, only my sciatic pain and if I thought it would help my back pain then he would not even consider me having it.

The Only reason I had my SCS was for lower back pain. The electrodes were placed peripheral (just under my skin), it is working good for my pain.

Am I mis understanding you?