My Story: I Had SCS Done

My Story: I Had SCS Done

Editor’s Note: Phil Meade is a 73 year old St. George, Utah man who has shared his thoughts as he decided whether to have a spinal cord stimulation device (SCS).  On Monday (July 13) he had the permanent device implanted. In the 5th installment of the series, he tells the National Pain Report what it was like.

I went ahead and had the procedure on Monday morning. Can’t tell you much about it, because I was out. I remember awakening afterward and two nurses were in a hurry to have me walk. I thought it was to get the blood flowing and begin the healing process.

Not exactly.

They wanted to see IF I can walk. If I couldn’t, they were prepared immediately to take me back into the Operation Room and remove both devices. I don’t remember anyone telling me about that possibility. The good news (actually the VERY good news) is it went fine.

So onto my rehab.

They sent me home and asked that I walk 100 yards three times a day and build it up to at least one half mile walk per day. That was good for me because you’ll remember one of my goals in having the SCS device implanted was so that I could get back to my active life style of exercise and, particularly, walking the golf course.

As I mentioned, the surgery was Monday and that day I still felt pretty good thanks to the effect of the anesthesia. On Tuesday, it was more painful, but actually not bad. They told me to expect some initial discomfort.

But they didn’t tell me about Wednesday.

It was a BITCH! It took me several minutes just to be able to sit up in bed. It was hell until the pain medication kicked in after breakfast. I took the maximum allowable of Lortrab because of the pain. (In case you’re wondering, one pill every six hours). It certainly helped reduce the pain, but it also caused insomnia and constipation (not a good combination).

By Friday, the pain began to recede, I reduce the pain meds by half and I began to sleep better. Also, and this might fall into the too much information category, I took laxatives which also helped.

I really have had a hard time getting real restorative sleep which everyone needs, and I have long depended on it. The hardest part about sleeping is that I can only be on one side. The Leads are in the middle back and the Pulse Generator (Stimulator) is on my upper left hip. Being a “tossy-turny” sleeper, major adjustments were needed. (By the way, I have no idea if I spelled tossy-turny correctly.)

I am moving around more, and though my natural Irish skepticism will rear its head at any moment, it is fair to say that it’s a “so far so good” experience.

I go in to see the doctor Tuesday afternoon to activate the Stimulator and teach me the nuances of managing my pain through it.

 

 

 

Authored by: Phil Meade

There are 5 comments for this article
  1. John S at 9:26 pm

    To; Angela Gregory; I’m now 56 and I was about 46 or 47 when I had my SCS installed with a permanent devise. My story didn’t end well once the wires were pulled away from their placement station on the spine. I did have about 4 to 6 weeks with a working SCS and my personal feeling are the devise worked just as well as the temporary I used.

    My pain meds were reduced just a bit – barely – as it does take time for the body to adjust to the new form of stimulus. Keep in mind the SCS has limitations or at least mine did. The Dr’s told me up front that the SCS would not cover all areas of pain and so I was to tell them where the pain was most severe and that’s where they would concentrate the stimulation. My pain was; low back, into both hips, down both legs and into both feet and my left side was by far the worst and that’s where the SCS was programed to concentrate on. Having 50% of my pain reduced was major progress for me and so was reducing the amount of pain meds I was taking at the time.

    As far as the permanent SCS having more or less stimulation > I felt there was no noticeable difference between the two. The permanent SCS was much easier to use, no wires and I only had to bother with the remote I carried with me at all times and it was no real bother to use. Sometimes it just takes getting use to and adjusting the flow of stimulation you want or need as your pain level changes throughout the day and night. To this day I have not heard of anyone that felt the permanent SCS was not as strong as the temporary. Remember the only real difference is the first trial period uses the same SCS, its the wires that have not been put into place to work with the remote adjuster. Once you get the final SCS the lead wires are attached to the internal battery – in my case the battery was near my stomach.

    I can think of only one reason why there might be a difference in intensity and that is due to the placement of the lead wires and the exact location might not be the same as where they were for the trial period. This can make a huge difference if you have a lot of scar tissue or other factors that could inhibit the free flow of current from the SCS. For that reason it could take a few weeks of adjusting the SCS until you find the settings that work best for you.

    In my case, I was getting out of my car when I felt a sharp pain in my low back and suddenly the stimulation was no longer going down the outside of my left leg it began to go down the inside of the leg. An x-ray revealed a migration of the lead wires of just a mm or 2 and that’s all it took to change the direction of the stimulation. My doctors tried 3 operations in 5 days but they were not able to duplicate the original results on the SCS. They told me there was scar tissue everywhere from my previous operations and it would be to dangerous to attempt more than the 3. The SCS was removed and I was told that my case was one in a MILLION and no other options were available.

    That was 2007 / 2008 and they have made major improvements to the SCS and I hear a lot of great things about it. Please remember one thing – the SCS wasn’t made to eliminate 100% of the pain but it can get you back on your feet and walk for as long as you might want. In time meds can be reduced and PT done more often as you begin to gain strength and confidence. It didn’t end well for me but I would do it all over again if I could, the lead attachment used today is much more precise WITH much less chance of migration. Its a better SCS and it can change your life for the better.

    Thank you,

    John S

  2. Angela Gregory at 2:20 pm

    Hi Phil. Ive been following your story and we have exactly the same problems. The only difference is I am 51 years old, I’ve tried all the conventional treatments along with pain medication and nothing helps that sciatic pain. I recently had a very successful 3 week trial with the nevro senza which covered both my left leg and lower back. It was like a fantastic holiday, 3 weeks of barely any pain. I have been following other peoples experiences on a scs forum and quite often I read the permanent implant doesn’t give as much relief as the trial did. I wondered what your experience is and would you say the permanent gives you as much relief as the trial? Thanks for sharing your experience with us it’s important that we see that whether it’s good or bad as it helps to know EVERYTHING before making that decision. My goal was to walk my dog, pain free for half an hour each day, I achieved it with the trial which was amazing. 🙂

  3. Phil Meade at 5:09 pm

    John S

    I did both the trial and implant. The trial has the leads attached to the spine, exiting the body at mid-back and attaching to an external stimulator on a belt around the waist. The good news is you can adjust it anytime since it is always with you. The bad news is your cannot have it more than four days because they fear an infection may form even thought you are on antibiotics. To me I needed a few more days to make a thorough evaluation so my decision was with about 80% of what I wanted.

    Contrary to the temporary, the permanent SCS needs external devises to “talk” to the IPG (Internal Pulse Generator). This requires a device to activate and adjust the stimulation level or pain location, another to charge the IPG, and another to charge the charger. All of the these, including carrying bags, weigh about 6-7 pounds.

    I am on day 13 with another four weeks before I can become active again.

    I will update my progress periodically.

    Phil Meade

  4. John S at 7:15 pm

    Hi Phil,

    I read your most recent segment about the SCS you had done and I have a few questions if you don’t mind.

    Is the system you have in now for a trial basis or is it permanent ? I’m a bit confused, when I had mine done back in 2007-08 my SCS was done in 2 stages. First was a trial period and the devise was worn on my belt or hand carried. After it was determined by me that I was getting pain relief the second stage was having everything surgically implanted; no exposed wires, just a small control unit that could alter the impulse and amount of energy sent down my leg. The battery was implanted near my stomach.

    In your July 19th posting it says you have wires coming out of your back with a unit on your hip that made sleep difficult.

    My experience with the SCS is nearly 10 years old and I’ve heard they have made some major improvements during that time. Is what you have now the final version or is there more work to be done ?

    By the way, I’m a golfer to and I always told the doctor ” I just want to be able to swing a golf club “. I know how important it is to you, its a great game and walking it makes it even better.

    I hope the stimulator works for you, keep doing the PT and be patient – don’t rush the process as it does take time.

    Thanks Phil,

    John S

  5. Dennis Kinch at 4:49 pm

    It’s a lot to go through, I know. I had one put in on Friday and taken out on Monday! Turns out I had fractures and the signal was going right to them and lighting them up. But I have learned something that has helped me through that and other things, like sleeping and bbowel moving. Quite simply, let it play out. I suffered through the sleep thing for 2 years until I learned to just accept whatever it threw my way. It took a coupl’a months but soon, the problem was gone and I learned to train my mind to stop thinking about things, not an easy thing. But now I can sleep in my recliner, (laying back, feet up, the only way I can lay down, ever!) and, I sleep whenever my body wants and just accept it. Sometimes 12 hours, 8, 4, or even 1. I even have days where I just go through to the next day.

    It’s part of something called “Spontaneous Remission” and it turns out it’s the same answer to the constipation thing. I just go when I need to go. I do a meditative technique, let it do whatever it does, 3 or 4 days later, I go again. I know that sounds strange and goes against everything everyone, including me, believes, but it’s been this way for 15 years now. I haven’t been sick since 2004, except my spine stuff and It feels so good not to worry about it. If they told me I was gonna die next week because this method was wrong, I would gladly accept that too. I’ll take 15 years without worry and anxiety over those 2 when I suffered, any day.

    This is just my way, but I’ve applied it to many things and have had 10 years of doing much better in many ways. Just food for thought.