Medical update – Up and running for SCS surgery

For the first time in six months I travelled to the capital yesterday to attend an ‘education day’ in preparation for my spinal cord stimulator (SCS) surgery. The event took place in a city centre hotel and was facilitated by a leading member of the pain intervention team at the hospital I attend.

Seven prospective recipients of the SCS surgery and their companions attended. We were required to bring a companion so that he/she would know about the procedure and be there to offer support afterwards.

It wasn’t difficult to identify the chronic pain sufferers in the room. All one had to do was look at their faces.

I had already researched all about SCS surgery but I found the day to be both educational and entertaining. It was clear that our facilitator knows her stuff. She told us that more than 500 people in Ireland have had the surgery to date, with a success rate of more than 85 percent. Success is defined as experiencing a decline in pain levels of 50 percent or more. Some patients have done much better than that, even becoming entirely pain-free, while a few have experienced little or no relief from the procedure. They don’t know why it works for some and not for others.

Given the delicate and invasive nature of SCS surgery, there is always a trial period of about two weeks to test whether it will work for the patient or not. If it is making a positive difference, then the device will be implanted permanently.

The surgery requires that incisions are made in the upper and lower back so that leads can be placed along the spinal canal and then to the battery device itself, which is usually placed in one of the buttocks. You can turn the device on or off, or up and down, by using a remote control gadget similar to a TV remote. The device is programmed while the patient is in hospital, and can be modified remotely by the pain management team afterwards, if required.

The recovery period is lengthy. The patient is asked to be as still as possible for three to four months to give the leads a chance to take root solidly in the proper place along the spine. Sudden movement can cause the leads to move out of position, which would then require more surgery to return them to their proper spot. Nobody wants to have to go through that.

Then we were given the list of ‘Don’ts.’ Don’t bend, don’t lift, don’t pull, don’t twist, don’t stretch, don’t push; don’t make any sudden movement that might dislodge the leads. And all of this for three months. Don’t drive for four months. Don’t go back to heavy work for up to six months. Healing and recovery require that we do as little as possible for the remainder of the year, so that by the end of it, hopefully, we can live full lives again.

Almost as discommoding as these instructions was the news that we can’t take a shower for about two weeks after the procedure or until such time as the stitches are removed. Given the nature of the surgery, there is a high risk of infection if the wounds aren’t cared for properly. As the instructor put it, nobody ever died due to the lack of a shower for a couple of weeks, but lots of people have died as a result of serious infection.

Though the instructor didn’t downplay the risk of failure, she was keen to tell us about success stories, and there are plenty of them. She also promised that, if we wanted, she could put us in touch with a patient who had a similar pain history to our own and had successful SCS surgery, who could function as a friend and support along the way. An excellent idea.

All that remains now is to be given a date when to show up at the hospital for the two-week trial period. That could happen any time within the next few weeks.

I journeyed back to Limerick last night (after an hour-long diversion at Portlaoise had added to an already very long day) feeling optimistic that the SCS will ease my pain enough to allow me to function properly again. And that would be a delight.


 

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Pain has beaten me

Two months ago I thought I was gaining control of my chronic back pain. I had found a new physio, I had followed her recovery plan and had cut back on my medications. I had increased my exercise and stayed up longer each day. And it seemed to be working. The pain had begun to ease to such an extent that I decided I didn’t need more surgery after all and could live without getting a spinal cord stimulator. I began to look forward to having a reasonably active, good quality of life.

Now that hope is crushed. For the past six weeks the pain has been increasing again, so that now it is as intense as it ever has been. I was hoping it was a short-term flare up, and was determined to not panic. I continued doing what my physio has recommended. But to no avail. The pain is so bad I want the spinal cord stimulator to be inserted as soon as possible. It is the last shot I have at being set free from this prison. If it fails, there is nothing left, but that is okay. Then I can choose whether or for how long more I can continue to endure this torture.

Thinking about life and end of life, I realize that I have been lucky in so many ways. I don’t have a bucket list of things I want to do before I die. I have done most of what I wanted. I have no desire to see how trump fares in office or how brexit works out. Indeed, the direction the world has taken of late makes it a far less attractive place to be.

The only reason I want to keep on fighting is for the sake of my mother and family. But the pain is beating me. All I can do is try to take each day at a time for as long as I can.

Pain comes sweeping back

It’s just after five in the morning and I have been awake for more than an hour with pain that splits my body in two. I’m trying not to weep but I can’t stifle the tears.

I had been making progress, so I thought. I had started attending a new physio who emphasized that recovery was as much psychological as physical. She gave me some uncomplicated exercises to do and encouraged me to take less medication, stay up longer and engage more with people and with life. And I did. And I tried. And I thought I was making great strides – my colour was better, my weight up, my activity increased, my pill consumption down.

And then, literally overnight, the pain came surging back. I woke at 3am Saturday with pain in my hips and buttocks that I didn’t have before, and with my lower back feeling like a poker was buried in it. In a matter of hours the pain levels had gone from a livable with three/four to an uncopable with seven/eight. And the frustrating thing was I couldn’t understand why.  I tried to remember if I had done anything differently, if I had over or under exercised but I hadn’t. This enemy had simply attacked me again without forewarning or reason, and I was so disappointed. The pain in the hips has eased now, but my back is worse than ever.

I was going to forgo the surgery for the spinal cord stimulator, both because my new physio counseled against any more procedures and doubted it would help me a whole lot anyway, and because I really don’t want to subject my battered body to more trauma, but I am changing my mind. Pain has made my life miserable. It has left me unsure of what any day is going to bring. It has left me deeply unhappy. 

If the spinal cord stimulator doesn’t work, and this new physio regime turns out like the rest, then, as I’ve said so often before, please just let me go.

Back to hospital I go

It’s been a while since I blogged, mainly because there was nothing new to report.

Now, however, I am preparing to return to hospital. I will be going in on Monday and will remain for up to five days while they try a different drug out on me. If that doesn’t produce the desired results, then I will be getting a high velocity spinal cord stimulator, which, the consultant assured me, can reduce pain by up to sixty percent. This is an electrical device that disrupts pain signals.

It’s a slow process, though, and may take a couple of months before it is put in place. If I do end up with the stimulator, not only will I be screwed (I have seven screws in my back), I will also be wired as well. When I die, I might as well be sold for scrap.

So, I’m hoping that the journey I am about to take will be the one that brings me some comfort and hope.

Struggling to live, battling to stay alive

A year ago today, I left hospital in Dublin after my first spinal surgery. Though I was in pain, I was chirpy and full of hope. The surgery had gone well, I had been told. The bolt had been inserted and held in place with four shiny screws. Over the coming weeks, as the graft took hold and the wound healed, my strength should return and the pain should ease and eventually subside. That was the plan and the promise.
I came here to Limerick to begin my recuperation and, though the wound healed nicely over the following couple of weeks, the pain never disappeared. I waited and I fretted and I hoped, but it never went away. It was clear that the procedure hadn’t worked and I was despondent.

A subsequent scan showed that the screws had come loose and no healing had occurred. A new procedure was recommended. I jumped at it. Surely, once those blasted screws stayed in place, then the pain would disappear. I had the second surgery and a third two weeks later to add further support, but the pain never disappeared.

One year after my first surgery and six months after the follow-up surgeries, my pain is worse than ever. All I have for all my troubles is a titanium bolt and seven screws. I feel screwed both literally and metaphorically.

With injections having achieved nothing except to fill my back with alien fluids, and with the failure of various alternative treatments to make any difference, I am left with strong medication to help me through each day.

Now there is talk of inserting a spinal cord stimulator to deflect the pain. I don’t know precisely how it works, except from reading the literature there is no guarantee that it will succeed either. Some kind of morphine pump seems a last resort.

It is no exaggeration to say that the joy has gone out of my life and I have no pleasure in being alive in my current state. I have been doing a little extra work of late, but all I look forward to and the only thing that offers any solace is sleep. Thank God, with the help of a pill, I can get a relatively good night’s sleep. 

I dislike the advent of each new day, because it means another day of pain. Some days are better than others, but no day is good. I cannot remember what it is like to be without pain.

I am full of self-pity, though I am no less deserving of chronic pain than anyone else. I try to focus on the positives – and there are many of those: a supportive community that gives me the luxury of allowing me to work at my own pace and that provides the financial resources I need; a loving family and a mother restored to good health after we thought we had lost her; 52 years of life during which I had no pain and got to see so much of the world; the knowledge that so many people are praying for me and sending me good thoughts.

Still, my natural tendency is to see the half-empty glass. Much of the time, all I can think of is escaping from the pain. I can’t see myself living into old age if my situation remains as it is. I can’t see myself enduring even another two years of this daily purgatory. My thoughts turn very dark and I am tempted to despair and self-destruction.

I pray every day for the strength to keep going and for a breakthrough to take place, for I find this agony so difficult to endure.