8 mos past SCS paddle implantation

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AnnaB114
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Date Joined Mar 2017
Total Posts : 19
   Posted 11/7/2017 2:49 PM (GMT -7)   
Back in March I made the biggest leap of faith so far in my life and had the Boston Scientific Paddle lead implanted at T3-4. This was highly recommended because I have severe pain upper and lower back. My spinal cord rotates through the thoracic segment and it causes a lot of nerve pain but in addition to that I have quite a long list of bone problems in my back. They said this would be the first step and if it doesn't help. they could always do a spinal fusion.

So in March I got it done and have been in increased pain ever since. It took me a long time to be able to describe the pain when the unit is on but what I came up with should give a pretty good indication of what it feels like. It starts with a jellyfish type burning electric pain from right to left just below my shoulder blades and then proceeded to what feels like a cattle prod being shoved in between my spine and shoulder blades.
I jump visibly when it sends that one. I have found that within 2 hours of using the scs I will get that prod pain. The rest of the time it feels like the unit is on at a low buzz throughout my upper back. I started taking nortriptaline and its helped some with the "feedback" but not with anything else.

I am considerably worse off since having the surgery and really want it removed. I'm exhausted from being in this much for this long. I try so hard to keep a positive attitude and not wear my pain on my sleeves every day.

Before surgery it had been my upper back that was worst. about 2 months ago I fell and hit the window sill in my bedroom smack dab on my spine. I still can't touch that part of my back hardly. I can't sit in a chair or ride in a car for more than 30 mins without having to adjust. I'm not getting good rest at night because I wake up 5-8 times each night from the pain. I really don't know what to do.

There are some days I wish I could curl up and die. Its truly unbearable at times. I've tried most of the muscle relaxers and none of them help me for very long. I'm thinking about asking him about clonazepam or valium or something. My dad takes that at night to help him. Have any of you taken it and does it help?

This has been a nightmare and I am ready to wake up from it. I'm 34 and even though I'm stubborn as a mule, I can only take so much.
I've been going to the gym because I've heard that has helped some people. White it does help my mind, its not helping at all with the pain. Is there anything else I can try or a suggestion I can make to my Dr for something that has been helpful to any of you?

straydog
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Date Joined Feb 2003
Total Posts : 15181
   Posted 11/7/2017 5:08 PM (GMT -7)   
I went back to when you first posted here about getting the SCS unit. I am sorry to read that the unit is not helping. It sounds like you have had your limit, I understand. I suggest since you are not getting the relief you had hoped for, I would make an appt with the PM dr & tell him you want it taken out. Be honest with him, make a list of everything that is going on. You had a bad time starting when it was first put in. I know you took a chance & hoped it would help. The only other option I can see is talk to the dr about an implanted pain pump & get his thoughts. Are you still against having back surgery, you had touched on that subject before.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 11/7/2017 5:34:03 PM (GMT-7)


AnnaB114
New Member


Date Joined Mar 2017
Total Posts : 19
   Posted 11/8/2017 6:37 AM (GMT -7)   
I don’t really know what to do right now. I’m the kind of person who hates things hanging over my head waiting to be done. I’d rather just do whatever it is and be done with it.
I’m afraid I shouldn’t tackle this with the same mindset though. Especially with my back being so “unique” I feel like if I start having surgery, it will just continue.
I’ve been on 2 different muscle relaxers to try and reduce the spasms in my back and they have helped until recently. Ive has a constant spasm for over a week now and it’s so intense. I can usually ice or heat and rest to get rid of it, at least for a little while. Not this time though.
I’m going to call the office and ask about maybe trying a benzo since I’ve tried every other muscle relaxant and they either don’t work or don’t do enough. I’ve read that benzo’s can help a lot more than MR. Guess I’ll see what he says.
At a minimum I want this removed. The battery doesn’t bother me at all. And even when I had the scs on full time, I only had to charge about every 5-6 weeks. I don’t know if it would help to take it out or not but I’ll never know unless it happens either.
I’m trying very hard to be logical about it all and give things a chance to work but this is miserable.
What do you think about surgery? Have you seen anyone else in a similar condition have a single fusion and get relief?

straydog
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Date Joined Feb 2003
Total Posts : 15181
   Posted 11/8/2017 7:39 AM (GMT -7)   
about the muscle relaxer, have you ever tried Baclofen? I urge you to go the Drugs.com & look it up. It has a completely different makeup like the typical ones. It works on the central nervous system where the others do not. It should be taken every day at the same time to keep the serum levels at their full potential. It can have side effects like anything we take, but in a week or so they should dissipate. I have been on muscle relaxers for years & probably been on nearly every one of them. I was put on Baclofen several years ago & what a difference. You may not have any luck getting a benzo, there has been a huge crack down on the drs rxing them. I suggest trying the Baclofen. I was fortunate to have zero side effects. I have issues with a lot of medications causing the reverse of what it should do, this includes OTC stuff. My drs shake their heads because it is such a challenge for them.

Only you can make the decision about the SCS unit being removed or how much relief you are getting. You have had the unit for 8 months now, looking back over the past 8 months should give you an idea of whether it is helping you or not. I have seen more failures here at HW than success stories. I try to remain neutral when someone new comes along saying their dr has recommended the unit. Myself, I would never consider one, too many issues with them & that ultimate wonderful relief drs talk about, I don't buy. Their goal is to get their patient off of narcotics. Even more so now with the environment of pain medications. When I went down the pain pump journey, by that time I was looking at my quality of life at that point. I initially rejected the pump idea, I looked at my dr & said I am too young for that. He said that is fine, it is an option & I am betting in 3 months we will be discussing it again. He was right 3 months later I said I want to do a trial.

Surgery can come with its own set of potential risks. Any surgery involving the spine is not fun, but again it is what the person expects in the long run. Can you live with some possible restrictions, are you willing to follow the drs post op directions to the letter. How a person feels mentally about surgery has its own component. I have seen people say oh I am having surgery & I will never be the same again or I am not going to be able to do anything. Guess what, that mind set has a huge impact on how well they do. At the same time you cannot have the ones that do not listen to their dr & they are going to do things their way, that is disastrous on every level.

Again, it is all about your quality of life now & in the future. Not every surgery is a failure. If you mention surgery to people you will hear every horror story imaginable. All that does is terrify the person. If they were all failures drs would not be allowed to do them & insurance would not pay for them to be done. I suggest any conversation of surgery be kept between yourself & spouse, unless you are in to being terrfied.

You will find that most of here prefer a neurosurgeon for any spine surgery. Preferably a board certified neurosurgeon too. I am quite sure your insurance has them on the plan. They stay up on their education in order to stay board certified & there is a difference. You don't visit just one, you see get 2nd & 3 rd opinions. Do not see a couple in the same group either. A good surgeon will never insist a patient have surgery unless it is an emergency. Instead the dr will say here are your options. If you are not given options, you chalk that dr off.

Again, it is all about quality of life!!
Susie
Moderator in Chronic Pain & Psoriasis Forums

AnnaB114
New Member


Date Joined Mar 2017
Total Posts : 19
   Posted 11/8/2017 8:11 AM (GMT -7)   
I've been on Baclofen for the last several months along with Tizanadine. They had given me some relief but it was the Nortriptaline that seemed to help more. I feel like the unit may have moved at some point and its definitely affecting my nerves. But I guess when it does that, being in extreme pain the muscles tighten up as well. It feels like the muscles between my shoulder blades and spine are about to pop. Have you ever stepped on a golf ball or marble? You know that deep pain you feel? Well, that's what I feel in my back constantly for the past 8 months. It had subsided with the 3 meds I mentioned but its back at full force now. I've tried all the other ones my dr has confidence in and this was the best relief I ever got from any of them.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15181
   Posted 11/8/2017 8:47 AM (GMT -7)   
I know the feeling except for me it was the tennis ball feeling under my shoulder blades that knocked me for a loop. The lower back pain was the worst of the two. I am not sure what mg of Baclofen you were taking either. Leads can also migrate I am sure you know this.

Have you sat down & had a real conversation with your dr on how all of this is having an effect on your life?
Susie
Moderator in Chronic Pain & Psoriasis Forums

AnnaB114
New Member


Date Joined Mar 2017
Total Posts : 19
   Posted 11/8/2017 8:58 AM (GMT -7)   
It depends on the day, Sometimes its golf ball size, sometimes its a little more diffuse. Lately its been that golf ball type pain across both sides of my upper back.

My lower back has been waking me up and keeping me up many nights. Once I am able to lay down and rest, the upper spasm will eventually improve some but my low back has a constant burning pain through my hips and down into my legs. Not to mention the area I hit on the windowsill still hurts like the dickens.

I've talked with him each month I go in but up until now, he just said it should be getting better, just give it another month and I think you'll be feeling much better. That never happened though. This last time I was just tired of complaining. I felt better than I had since surgery but still worse than before.

I'm going to talk with him about getting it removed and see what he says and if he has any other ideas. If I can get it removed, I'd like to do it this year since I've already met my deductible and max out of pocket. This stupid thing is over 125k. It sucks that it has caused me even more pain.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15181
   Posted 11/8/2017 2:27 PM (GMT -7)   
I suggest that you copy what you posted here & discuss it ALL with the dr. Eight months out you should be feeling better & this is not what I am hearing out of you. You have a very expensive tool implanted that is not doing the job for you. This give it another month would have ran its course with me. Are you on any type of pain medication? I am sorry to read another person not having satisfactory results with their SCS. I have two friends that went this route & regretted it.
Susie
Moderator in Chronic Pain & Psoriasis Forums

AnnaB114
New Member


Date Joined Mar 2017
Total Posts : 19
   Posted 11/8/2017 2:45 PM (GMT -7)   
I do have pain meds. I used to take 180mg of methadone for pain management. Since I've seen this dr, Ive come down to 50mg a day and I take Oxycodone for breakthrough. During the trial because of the methadone, I was wide awake and got no relief from the twilight type anesthesia because the methadone blocked any benefits that iv meds could have. Since I know that I'm looking at other surgeries, I want to get off of it altogether and hopefully that will result in better pain management post op.

It was a long road getting to where I was and even longer getting here today. I'm in pretty extreme pain but I know that I can slowly taper myself off of it which is how I've done it so far. I don't notice much of a difference in the pain between 100 and 50. I've done that voluntarily just because there was the possibility that the meds were causing more pain.

I want to eliminate anything on my part that might be causing more pain. I've been able to stay working but its really hard, Especially this past week. Taking that extra 10 mg doesn't help the pain at all. So I'm looking at different meds that might help better.
I go to the gym 3 times a week. It hasn't helped my pain at all but it makes my mind feel better.

The office called back and is changing me from Nortriptaline to Elavil. So maybe that will offer a little relief.

I think I have ruled out meds causing the hyper-algesia now. I have a sleep number bed and have tried just about every setting on there. I'm eating whole foods so no preservatives and I do my best to stay as active as I can. After work its so hard to do anything at all because its so tight.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15181
   Posted 11/8/2017 4:21 PM (GMT -7)   
Wow, I am shocked that you are on Methadone. The CDC has pushed drs to take patients off of it. It's a cheap drug & can help with pain, but has some bad side effects. At 50mg if it comes down to you being taken off of it, it will be a long taper. I don't know how long you have been on it, but I sure hope you are seen by a cardiologist to have your heart checked out periodically. There are other pain meds out there that your PM dr can try you on.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

AnnaB114
New Member


Date Joined Mar 2017
Total Posts : 19
   Posted 11/9/2017 5:50 AM (GMT -7)   
As I’m sure you can see, I had extremely poor pain management prior to this dr I currently see. He just upped the dose every time the pain wasn’t well managed. They knew of several problems with my back but had no idea that part of the problem is my spinal cord being twisted. That’s why none of the injections ever helped. My nerves go weird places.
I am working to get off of methadon entirely. More than anything else I feel as though everyone judges extremely harshly anyone taking methadone. It’s the critical way drs look and the way people won’t make eye contact and you can see they treat you like a junkie. Not very fair especially to someone whose never done street drugs in my life.
I have been extremely quiet about it because I don’t want people’s judgement or condemnation. I just want to be able to live and continue to work as long as possible before it all deteriorated so much that I am stuck indoors.
I have been on it for nearly 8 years now. The first 80mg drop happened in one week when I changed drs. That was very difficult. Since that time and him thinking it may be exacerbated by meds, I brought myself down against his advice to rule it out. I’ve found with proper management and hitting the pin from the appropriate angles that I don’t need that much to function. This past week has been different but even taking the 70 mg I’m prescribed doesn’t help any more. So I’m hoping that changing from nortriptaline to amatriptaline will help. Other than that I’m just barely making it.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15181
   Posted 11/9/2017 9:32 AM (GMT -7)   
First off, let me make it very clear, no one in this forum will ever judge you or anyone else about their pain medications. My initial comment about being on Methadone is because of the CDC & NIH targeted Methadone being rx'd for pain & they want drs to stop rxing it. Chronic pain patients have that certain stigma attached to them because we do require medication to function. One of the biggest problems with Methadone is this, drs were prescribing a drug for pain that they knew nothing about!! Many PM drs were putting patients on it because they were abusing their medications, they felt Methadone would be a great deterrent for those patients. I am not pointing a finger at you & saying this was your situation. You had a PM dr that was just what you said, not a good dr. The next angle is its cheap & works on pain.

Our regular drs such as surgeons, PCP's & PM drs know nothing about Methadone, I mean nothing. I know of situations where surgeons have refused to do surgery on patients as long as they are on Methadone. Why, because they do not know how to manage the post op pain & anesthesiologists do not know a thing about it either. For them the risks are too great. Methadone has a completely different way of working than a regular opioid for pain & these drs are clueless about this. This is why so many patients end up having tremendous issues trying to get off of it. The issue with it affecting the heart is a very real, hearing loss issues, destroying teeth & many other things. I do urge you to have your heart checked out by a cardiologist. In the archives here at HW there are lots of posts about what happened to members that were on Methadone for pain.

You have a lot going on & I do hope that your drs can come up with a plan to help you. Your quality of life is not good & you are are too young to have to stay on this path.

Keep us posted on how you are doing. By the way since you posted this week we have members named Navy & Bott that are new to HW. Both have SCS units and are getting theirs removed.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 11/9/2017 9:42:51 AM (GMT-7)


AnnaB114
New Member


Date Joined Mar 2017
Total Posts : 19
   Posted 11/9/2017 10:52 AM (GMT -7)   
wow. I wonder why the Drs say they've "never heard of one causing pain" when there are so many of us in here that report it. Isn't that false and misleading information?
I know you weren't insinuating that it was my situation but that's the reaction I get most often. My current Dr didn't flinch when I told him and he was ok with it initially just because I explained it all to him and was up front about it.
I have already decided that I'm weaning off altogether. I had an EKG before my surgery this past March. So all is ok for now. He is extremely proud at how well I've done and the mindset I have being able to reduce my dose while being in extreme pain. So I know that I have a good support system in place. I'm hoping that once the Methadone is out of my system that I will have more effective pain management. I know it clogs the receptors in my brain and its hard for anything else to work. I have found that I get more relief from the oxycodone than the methadone anyway. That's part of how I'm doing it. I had been dropping 10mg a month and did fine until I dropped 20 in 2 weeks. So I just let it ride for a while and just reduced to 50.
I am lucky to have had physicians who were willing to try and help even though I took it. I was very candid about it and I think they respected me for it. I've told them all that I just want to continue to work as long as possible and try to do some of the things I enjoy like camping and yard work. I'm not doing those past times yet but I do hope to be able to without being in worse pain afterward. I might be totally ignorant and just have expectations for myself that are unreasonable but it gives me hope and keeps me fighting. I don't want to waste away like so many people end up doing. I have more opportunities now than ever before in my life. Married and want to adopt. So I fight every day to go to work and come home, cook and clean and have some semblance of a life. Until my stubbornness subsides, I'll just keep going with that.
It's been hard to learn to stop pushing past the pain when I do stuff. That's how I got here. I broke my back at some point in the past and didn't even know it. I found that out during the myelogram last dec. So I've slowed some and when I start hurting bad, I take a break. So I'm trying to be smarter.
The hardest part is seeing the disappointment in my wife's eyes because we want to do stuff but she can see the pain in my eyes and won't ask. That breaks my heart. She tries to be understanding though.
The NS mentioned a pain pump to Kate when she was in his office for a followup. She had a fusion at L5-S1 this june. Its been such a rollercoaster of a year. Thank you!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15181
   Posted 11/10/2017 10:28 AM (GMT -7)   
The reason these drs push the units is the lack of knowledge. That scares the living hell out of me. If they really knew about them they would not be so quick to think this is an answer to their prayers in getting patients off of narcotics. Get that monkey off of his back. Think about it, if anything goes wrong with one the dr cannot do a flipping thing, the rep has to be brought in. The rep goes through his little list of things to check. When something different shows up on his check list, he doesn't know what the hell to do either. That is not fair to the patients because people are having real problems with these units & no one knows what the hell to do or why it is happening. This has been going on from day one with them. I have heard many people say they are no different than a tens unit except implanted. I am extremely sorry that you have become another statistic with one.

The rep shows up at the drs office gives a 20 minute speech on how great these units are for controlling pain & how the patient will no longer need pain medication, NONE!! Believe me, most patients find their selves without any pain medication once it is implanted. If a problem arises I want a dr on hand that knows what the issue is & know how to correct it.

Is your unit compatible to have an MRI? I am asking because if so, if its been awhile since you had an MRI maybe this is something to think about. I have a pain pump implanted & some other metal stuff that is not MRI compatible unfortunately. If you ever entertain the thought of a pain pump, ask anything you would like.

Try not to let guilt slip in, you tried something with every hope of it improving your health issues. It is not about what you can't do anymore. Turn it around to think about what you can still do. It takes a while to learn that. My issues hit when I was much younger & chronic pain has been my friend over half of my life. I am 64 yrs old now, more experience under my belt than I would like to have. I have other health issues that literally rocked my world. I have truly lived two completely different lives. But I just tell myself, hey look around there is always someone much worse off.

Since your wife just had surgery in June, you are right, you two have & are still on a roller coaster. How is your wife doing now? You know, it takes a long time to completely recover from a fusion. about 18 months out from the surgery, however she is doing then, will tell her how successful her surgery has turned out. Hopefully she is turning the corner. The 6 month mark is usually the beginning of things.

Best advice I can give you, given your circumstances learn how to pace yourself with everything you do. Instead of trying to get everything done in 1-2 days, spread it out over the week. Work of course, maybe clean the bathroom one evening, do a room at a time. Practice this & it will become your new normal.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 675
   Posted 11/10/2017 4:52 PM (GMT -7)   
AnnaB:
Your posts are a thoughtful reflection of the true day to day reality of what it takes to find a semblance of a “normal” life when confronted with chronic illness and/or ongoing pain.

I applaud you for your commitment to living the best life that you can, under the circumstances that confront you. You are taking ownership of your life and giving it meaning and direction and that is not an easy accomplishment when accompanied by deteriorated health. Your desire to continue to work, to garden, to go camping in the forest and be at one with nature, to adopt a child, being considerate of your partner/wife and her needs says a lot about you as a person. High-five and cowabunga.

I never envisioned fragile health on my life’s trajectory. But it is my reality. I focus on what I can do and what my body is doing well to keep my emotions on an even keel. Long distance running defined me in earlier times. My passion for running serves me well as it keeps me focused on continuing to walk despite advanced avascular necrosis in my hips. I will walk . . . Until I cannot.

As a physical therapist I saw several patients in the course of my career with implanted SCS units. I rarely saw a patient benefit. Those who suffered with more pain after implantation of the unit outnumbered those who experienced a reduction in pain. I came to see the SCS as a glorified TNS unit.

All to say . . . That you feel harmed by a SCS unit is a consensus shared by others who also agreed to placement of a unit.

I hope the company of this forum is bringing you a source of commaraderie and comfort. I know this forum has been a life line for me. Susie is an amazing moderator who gives of herself generously. You can trust Susie’s comments and opinions 1000%. I appreciate her immensely.

Sending you faith and hope as you weigh your options with your SCS unit. You know your body better than anyone else. Trust your decision as the right choice for you.
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

AnnaB114
New Member


Date Joined Mar 2017
Total Posts : 19
   Posted 11/12/2017 2:34 PM (GMT -7)   
My entire life from infancy on was filled with difficulty and I’ve never been one to say poor me. I was the recipient of every kind of abuse from the age of 20mos to 16yrs of age. I have always known that so many others have things much much worse than I. My childhood was scarred by a babysitter who was extremely cruel but I always knew that my parents loved me and so I never dwelt on any of it.
It does a great disservice for anyone to label themselves as a victim of anything. We have all experienced bad things but if you become a victim, you give your power away. I chose to forgive and I will continue to do that. No matter what happens in life, I have to live with myself and I can’t do that if I pity myself or treat others wrong.
This present challenge has proved to be the most difficult of my life because there’s nothing I can do except accept that seasons change and the strength of youth doesn’t last forever but I refuse to be bitter about it.
It’s been an excruciating 2 weeks now with more pain than I’ve felt for a while. I see my dr on Thursday and I have to find something that can be done to reduce this. I can’t sit in a chair or lay in bed because my low back is hurting so badly and when I stand I feel that golf ball in my upper back. Hopefully it will improve soon.
I am grateful for those of you who share and listen and offer insight and a compassionate message or encouragement. It does help to know that I am not alone even though I wish I were because I hate that there are so many other people suffering so much.
My scs is not comparable with mri. I could cry today because I’m in such relentless pain. There is no escape. I hope that your all having a good weekend. I really hate to complain about hurting but I feel better when I can. So thank you for listening and understanding. Your awesome ladies!
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