5 months since SCS implant and depressed
 

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?:confused:

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

Thanks guys - and gals!
 

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)

welcome littletexan
 

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

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

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?

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

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!

damn Fionab

excellent explanation
visual and can almost
feel it as you explain it
awesome

someone who cares

Fianab, thanks for sharing. Some of these problems (like the sexual one) I have had since before even the trial, it's just that the surgery implant made it worse. As for the urinary, I got nothing! I have spoken with both the neurosurgeon and the pain management doctors about it and they are both willing to write it off as just a side effect of the nerve damage. Sometimes, I wish - even if only for just a day - I could make the drs feel what I am feeling and go through what I have to live with. After an hour of sitting on the toilet feeling like your bladder was ready to explode only to have 8 drops come out, they might decide that something needed to be done! As for the SCS affecting any of these things, I have to write that off. I have tried days where I leave it on all day, part of the day, and off all day. No noticeable changes were made. Your statement about it taking a year before you felt like you recovered from surgery is one that I have heard many times before. Even my surgeon told me 6 months to a year. I just don't know if I can wait that long. My pain is getting worse - sometimes, turning on the SCS makes it unbearable. Unfortunately, as the pain increases, so does my depression. Thank you everyone for your help, comments, support, and assistance, but I am starting to think that there's just no help for me anymore. I am about ready to give up.

I tried calling the surgeon again today to get in for an appointment, but hit a brick wall. Had to leave messages that went unreturned. These peripheral neuropathy symptoms (not saying I have it, just have the majority of the symptoms) are getting worse. I really want to talk to him about it because I know its going to be a long road, even from there. I doubt he will put me on meds, but rather will send me to my pain mgmnt dr, not that I would blame him, but then I will have to wait for another appt to come around before I can get any relief. Also, I think I want to get back on Cymbalta, if my dr lets me. I want it for both its on label use as an anti-depressant because I need one, and its off label use as a long term pain reducer, nerve duller. Don't know. I just hate having to sit around and wait.

Hello Littletexan!
 

It's great to have you here :hug:
I so appreciate your openess and honesty. It's good that these issues get talked about, as it's an unfortunate reality to many of us.
You've received so much good input, I hardly know what to add other than I completely understand alot of the things you are feeling. Even just the chronic pain alone can rob us of the joy in life...not to mention the fact that the meds we take to battle the pain deplete our hormones, especially testosterone. Then, enter depression. It becomes an unending cycle, one that I'm all too familiar with as well. If it weren't for this forum, I'm not sure what condition I'd be in. It can certainly be a silent battle and very isolating, when left to our own lives and situations.

Scar tissue can be a menacing culprit. As it grows and changes form, it presses on nerves and can cause a wide array of side effects and interference with what the SCS is supposed to be doing for us.
I'm anxious to know what your doctor will have to say.
We are constantly looking out for one another here and the support is never-ending.

Glad to have you with us!

Rae
:grouphug:

Rrae, I can't thank you enough for your response. Like you said, there really isn't much to add - BUT the simple act of having other people who can relate and show that they care can travel much further than one might originally think. I'm not even going to say where I would be if it were not for the group of wonderful people that happened to be online in a chat room a couple of nights ago when the depression and loneliness took over. If any of you who were there happen to read this (and you know who you are), please know that I could never find an appropriate way to properly thank you.

You are also right about all the things we are robbed of. It is mostly thanks to my inability to work that I have taken over the role of "stay at home mom" and "housewife" - I know, my Man Card was taken away a couple of years ago, but that's okay too. I should be thankful that I get to spend all day with my children 3,2, and 1 Not something I would recommend by the way! But when they come up and want to be picked up or sit on my lap, or even just have me get down on the floor and play with them and I have to tell them I can't, I cry when they start to cry. I know it's not fair to me, but I also recognize that it is really not fair to them. I'm trying to do something about it, and that is all I can do. They don't know that, of course, but I hope that by the time they are old enough to figure it out, it won't matter anymore because I will be at least more better. I realize that's bad grammar, but it was the best way to get my point across! It would be too much to wish for i'm afraid that I would simply be better, only somewhat better and something is something, after all. Once I get to some drs, I will update. Thanks again Rrae for your reply as well as your support!

Hey you. As promised, I read about your situation. :)
Here is how I can relate:
My neuropathy began by affecting my bladder. I always felt like I had to go, and sometimes went 30 times a day. I had several invasive cycstoscopies only to have nothing resolved. They thought I had interstitial cystitis. A side note, when I tried Cymbalta a few months ago, I had horrible retention and spasms after 5 days. Otherwise, it was helping my mood.
I had/have pelvic pain/Pcos/endometriosis that pretty much made intimate times with my bf at the time impossible. I really do understand that .
To make matters worse, once on oxycodone, I lost all desire and also the inability to..well..finish the job.
I have found that after being switched to morphene and the fentanyl patch, that problem went away.
I have had debilitating depressive episodes for about 15+ years, even before I developed neuropathy. They are incredibly draining, and I too have found that reaching out to others who understand is so valuable. Whether online, or a real life support group for mood disorders, as well as therapy with a pain psychologist and an intensive case manager.

I still dip into deep depression and hopelessness often. You know that, because you saw my thread :-)
I just figure that if I have made it this far after almost three years, I can live another day and do the best I can. I have the added burden of being denied disability and being single and very little income.

Anyway that's enough put of me. :rolleyes:
Don't be afraid to write me.
I also like to read books and memoirs of people with mental illness. Another source of inspiration.
Keep your chin up.

Beautifully said, Featherbullet....
 

Depression is a terrible entity. I'm sorry you too battle it.
As we lift one another up, it's just good to know that we aren't alone.
Thank you for sharing.....

Rae
:hug:

Depression
 

I am at home with the new stim. It works, but dealing with surgical pain isn't a that fun. Can't handle narcotic medicines. Before i got crps i was never depressed always active always social. I set my own table. With nasty chronic pain, you lose control. Something that 99% of young - middle aged adults cannot understand. Pills and scs units are only part of the picture. I've seen psych folks but it doesn't help. I can't wait to get back to work. At least you are part of something even if you have to fake it. But it is good to have people out there who understand what this is like. It doesn't mean that life doesn't offer good things - it's just that you really have to fight way too hard for them. Being immediately post surg and telling my 5 & 7 yr old sons to not run into me / I can't bend - that's hard. Hopefully worth it in a couple months.

just in your sharing
experience strength hope
we have your back
this emotional crush of
spirit and capturing it back
mat it do so 10 fold
pain rob me of so much
changed my life in one night
but the depression that came
into my life is none other
me myself and i
as told when given lemons
time to make lemonade
that advice from a very
important person i have
come to know hope all
is well haven't heard
it is a community where persons
have each others back

someone who cares

Well Golly Little Texan....
 

The plate full of issues you live is hard to handle.... for you, for your spouse, for your children, and there are those of us, who having suffered some of the same, can relate.

That scs stim can be both blessing and curse as you work to become accustomed to its rhythm in your system. The "honeymoon" effect of "gee, I got a stim" just does not last forever, and beginning to realize how it functions best FOR YOU is key to living into the months and years which follow.

Elimination, both bowel and bladder, can be affected detrimentally by high signal use if you are given to pretty much leaving the unit static on a level all of the time. I had to learn this one up close and personal. Kind of awful it is when going to the restroom only not to be able to eliminate or void. THEN, this little light bulb "flashed" in my head as others have written...... turn it down silly.... and by gum, it worked. Without the strong signal rhythms, my body was better able to handle the challenges of something we each have done from the day we were born.

Depression.... oh how I know this one. I do not know whether it was a confluence of issues or any one issue, but after scs implant, within just a couple of months of realizing scs was working, Doc and I began to insert me into a regimen of withdrawal from the years and years of pain med use. This was no event for the weak of constitution. Compound this with the VERY hard work I was doing simultaineously at the time to regain my professional practice, as we were nearing financial collapse as a family. I used to earn several times what well off people earn in a year, and had been reduced to ZERO...... nothing. It was a catastrophe waiting to occur to realize I could not support my family in any standard of life.... at all. So, I had taken meds away, career had been taken away by the driver who had subjected my body to this in the wreck years ago, AND we were at the time realizing we either had to sell our home VERY fast or we would lose it.

Depression became my unwanted...... and absolutely HATED companion. I nearly lost, well, everything, including the blood coursing through my system because I felt inserted deeply into a very dark, damp, solo place called a well. Everyone around me became utterly worried. I was not, because I desired an end to it all...... and care was what ultimately helped me emerge after a conversation with God one afternoon on a lonely mountain road. Docs helped me, family and friends helped me, meds for depression and anxiety helped me, and God, yes God, helped me.

Today, I am back in practice again. Three days this past week [shhhhh, don't tell anyone, because they will climb on my back and beat me about doing too much ] I worked 13 hours each day. That house which had been so important to me???? Well, we sold it in three days from the listing, for more than asked, and due to multiple parties having interest..... God again gets credit [because this market was not one given to any home selling]. We have now bought another. We are not wealthy in money any longer, but we are overwhelmingly rich in the spirit and blessings!

For you, I pray all will be well, that the issues affecting your body functions will be regulated somehow, and that depression will be lifted from your spirit. You are a precious blessing to your family, and your wife and children can attest. Just look deeply into their eyes and you will know precisely whereof I speak. We will be here to help the best we can. You must make the very difficult steps of gaining control over the deceiver who would hold you fast in the clutches of depression down that dank and dreary well of isolation. BE among people, reach out and help others.... may sound pat and cliche' but I KNOW doing so helped me re-emerge from the slippery path to oblivion.

One who cares deeply, :hug: :grouphug:

Mark, there are so many things in your post that I truly can relate to. To give you an idea, we paid cash for our house, our cars, and all of our other "toys". My wife now has to work 2 jobs just to cover the utilities and food bills - and diapers aren't cheap either! I feel like it's my fault. I never cared about who made more money (my wife or I), as long as it was pouring in! But now, she is doing her part by working 60 to 70 hours a week, but I feel like a failure because I can't do my job at home. If "Stay at home Dad" was truly a job, I would have been fired a year ago! Plus, my wife has to work to be able to pay the live in help that I so desperately need. Like you, she didn't have to work a second job until we started watching our savings account dwindle down to an uncomfortable number. Also, like you, getting back to work is my biggest drive. My friends and family know that I go through SERIOUS bouts of depression and loneliness and I think some of them are waiting for me to "eat a bullet"! But the idea of putting that uniform back on and getting back to patrolling the streets of my hometown is a huge motivator for me.

As for the physical side, this SCS is not helping much at all. I have a meeting with my surgeon on Tuesday and I am going to explain to him all of the reasons why I believe this surgery has caused my peripheral neuropathy to get exponentially worse. Turning on the SCS half the time, causes my neuropathy symptoms to act up, so 50% of the time, this darn thing isn't even on. It plays no role whatsoever with my bladder or sexual conditions. I have tried every possible scenario from full on to barely on, to intermittently on, to off all day, to turning it on and/or off an hour before I try to urinate. I was talking to one of my friends on the phone earlier today who knows all of my problems and could tell that I was in the bathroom from the echo. 20 minutes later he asks if I'm still waiting to go, and I said yes. We both laughed a little, but a few minutes later, I finally went and started laughing at the noises of relief that I was making!

I have figured out the depression and I think I know how to cure it and will find out in a few weeks. The same with my sleep apnea that I have never mentioned on this site before because it never came up. Depression is a side effect of sleep apnea along with the constant pain, making my children cry because I can't pick them up or play with them, my non-contribution to the household, and the fact that almost every drug I am taking is a depressant! My sleep apnea has gone untreated despite the nightly use of my CPAP and I think I just figured out why a couple of days ago. All of these same drugs that help me move and are depressants, also cause something called "respiratory depression" - it slows or stops your breathing in your sleep but is generally not a problem unless you happen to have sleep apnea! I have a lot to discuss with ALL of my doctors, but I am encouraged that there may be an end to at least some of this.

In the end, I will digress, and thank you all - every one of you - for your help, advice, suggestions, understanding, sympathy, empathy, and most of all, just for being here to let me know that I am not alone! THANK YOU !