[littletexan77]

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?

[tkayewade]

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.

[Spiney95]

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

[littletexan77]

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!

[Saffy]

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)

[Hannabananna]

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

[littletexan77]

Hanna and Saffy, thank you both so much for sharing your own experiences, trials, errs, and successes with me. It really is nice just to have people to talk to! Saffy, it's not about me not being able to "pleasure my wife", it's rather the other way around. If anything, I am the Energizer Bunny except that I only have so much energy and pain tolerance to give!! My dr did do a battery of MRIs, CTs, and Xrays prior to the implant knowing full well that I would not be able to get any more. Hanna, the way you describe your gait changing to adjust to the pain of carrying your body is probably what my dr is talking about. He is just convinced that if he does the surgery without fixing my gait and muscle memory, my pain really won't go do any, but that if I do the PT first, the disk fusion surgery might make a noticeable difference in may pain. I do have a new problem, well, maybe new. I've begun to notice the outward symptoms of peripheral neurophathy. After doing some research (here and other sites), I have learned that I actually have a list of symptoms that fit and things that I would never think to bring up to a dr - like my feet are cold but sweating profusely (Why ask a dr about that?), but it is a symptom and all of these other symptoms that I have just been writing off to general "nerve damage" also fit into the neuropathy list. I have called him and am waiting to hear back because I would like to bring this to his attention prior to starting PT in June. The times that these symptoms are present, the burning sensations in my legs and feet are so bad that if anyone touched them, I would likely beat them half to death with my cane! I'm going to shut up now, and again, thanks for listening and sharing. Saffy, I'll be pulling my chair right up next to yours in front of the fire because that really does sound nice! The best of luck and wishes to the both of you.

James

[Njbackpain]

Originally Posted by Saffy

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,

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?

[Sandy Kay]

Hi
Just a quick note. Always mention problems or things you think may not have anything to do with the Dr. you are seeing. After having a series of spinal blocks I started spotting. I never mentioned it to my pain mgmt.doctor and went to my gyn. Turns out about 10% of women have this reaction to steroids. My gyn was ready to do surgey. Just happened to mention to my pain mgmt doctor that my gyn wanted to schedule surgety. He said why didn't you tell me, it's a side effect to steroids. I said didn't think it was something you would be concerned with. Now I mention things no matter how silly I think it may be.

Sandy Kay

[fionab]

Sorry to hear you're having such a hard time of it. I originally had the lumbar SCS put in for lower back pain and leg pain, even though they couldn't guarantee that I'd get relief in the lower back. Fortunately I have. I've always known something was not quite right about my legs and feet as I, too, always have cold feet (altho' I don't sweat...the inability to sweat is one of my other health problems), used to have bad charlie horses and arches of feet would cramp very easily. I actually didn't know I had lower peripheral neuropathy until I got a lumbar EMG some time ago and the diagnosis on it was severe peripheral neuropathy. Maybe you could request an EMG to see if there's anything that's being overlooked. All those years I wasn't sure what was going on with my legs/feet and now I know. The lumbar SCS has helped me deal with those issues, as is it really meant to deal with nerve issues and not mechanical/muscle issues.

I also had a cervical SCS implanted to deal with cervical pain, but it only really helped at first. Now I go in for another fusion at C6-7, C7-T1 tomorrow. Will be curious to see if I need the cervical SCS after these issues are addressed.

As far as the sexual issue, like others have said it could be several things. Side effects from some meds., possibly the SCS is affecting some of your "manly nerves" that we women don't have. When they put these devices in us they don't know exactly what nerves will be affected and that's why it's more of an art than science when it comes to tweaking for good coverage. I know that when I have my lumbar SCS turned up too high it starts some muscles to really hurt that aren't affected when it's at a lower level.

The urinary problem, I suppose, could be due to part of your muscle issues that your dr. wants to address in PT. We women have exercises we are taught to do when we have the opposite problem (incontinence) and those exercises are to tighten certain muscles, so would make sense that maybe tight muscles could cause the problem of not being able to go. Also, when my SCS is turned up too high it affects unwanted muscles, so maybe you could try turning off your SCS before going to bathroom in case it's affecting certain muscles attached to being able to urinate. just a thought.

It took me a good year before I felt like I was finally coming out of recovery. Even though I had the two SCS implanted at the same time, I think it was just my body needing that time to get over the surgery, needing to get tweaked many times, and the toll a surgery can take on one's body. Your having been in a car accident has probably affected your body more than you think and you may have to allow your body more time to recover.

I'm curious to know if you had any of these issues when you went through the trial. For me I had better pain relief with the trial than I do with the implant. Not sure why that is. Maybe it's how the trial is done as opposed to the permanent. Maybe our bodies eventually adjust to the stimulation and it doesn't work as well as it used to...just thinking out loud.

I'm glad for you that you have a good dr. as that makes a huge difference!