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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Remembering one of my worst days

I remember vividly almost every waking moment of this day last year. It was the day of my father’s wake.

Unlike the more common practice today, we decided to wake my dad at home. We wouldn’t take his body to a funeral parlor. We wouldn’t bring it to the church for an overnight stay. Instead, we would keep him at home with us in his own house for one last night.

So the house was open to all-comers. My dad’s body was laid out in a coffin in the middle of the sitting room. All the chairs were pressed back against the walls surrounding it, allowing for a free flow of mourners around the room as they offered sympathies.

In the kitchen off the hallway was all kinds of food, mostly donated by relatives and friends. The kettle was always on the boil. Neighbours, relatives and friends acted as hosts and hostesses. We did not have to worry about any of the catering or hospitality duties.

Our only task was to gather round my father’s coffin during the official wake period from 3pm to about 7.30 and receive those who came to mourn my father and to express sympathy. The circle of chairs was occupied mostly by the female members of the family, while the men – my dad’s sons, grandsons, and sons-in-law – stood by the wall in their black suits and ties. 

I did not stand with them because I was not able. I had come out of hospital just a few days before, after my third spinal surgery in six months, and was wearing a brace to support my back. Earlier that day, just before the wake started, I had sought and received a pain-killing injection from our local GP. I was also wearing two pain patches and had taken every medicine I was allowed in order to help me get through the evening.

But nothing made any difference. The pain was excruciating and unrelenting. People in their kindness shook my hand, but even the gentlest handshake felt as if my arm was being ripped from my shoulder. The combination of physical and emotional pain was almost too much to bear. Several times, I just had to go and lie down for a while.

The wake lasted for what seemed like an eternity. Though it was a dark, winter’s night, and our farmhouse is in the County Limerick countryside, people came in numbers touching a thousand from all over the country and beyond. It was testimony to my father’s popularity but also a demonstration of Irish culture and tradition at their best. People wanted the opportunity to express their condolences in person and to offer support and solidarity to our family in its grief. 

I knew only about 10 percent of them. Younger people came, flush with youth and life, friends and colleagues of my father’s grandchildren. The old came, now bent and creased by the passage of the years, friends and contemporaries of my father. And people of my generation came too, lots of them, now in mid life, friends and workmates of my brothers and sisters. From the well-dressed, well-spoken professional to the shaven-headed, tattoo-sporting construction worker, from my elderly priest colleagues in the Redemptorists to school mates of the younger grandchildren, they came – a true cross-section of that part of rural Ireland on that dark December night, 2015. 

It was wonderful that they came in such numbers, and my father would have been delighted, but in my grief and physical distress, I thought it would never end. I wanted people to come out in their droves to acknowledge my father and his goodness, but at the same time all I wanted was peace and quiet and the solace of my bed. My back was on fire, my arm hurt, and my emotions were in turmoil. I had been in hospital in Dublin when my father was taken to hospital in Limerick for what turned out to be the last time. I had never even got to visit him (we had no idea he was going to die) and how here he was being waked and I couldn’t even stand beside my brothers as a chief mourner to greet and thank those who had gone out of their way to stand with us in our loss. The only good thing I was conscious of was that if my father had died a week or ten days earlier, I wouldn’t have been able to attend his funeral at all.

Eventually, of course, the numbers tapered off as the clock approached 10pm, and the local priest led us in some prayers for his soul. We left my dad in the sitting room with a teddy bear his great granddaughter had put in his coffin to keep him company, and we struggled our way to bed, knowing that the next day, the day of the funeral, would be another test of endurance. I wouldn’t be celebrating the funeral liturgy but I was going to preach. I wanted to do that last thing for my father, no matter how difficult it would be, and I did. I’m glad about that.

Now a year has passed, and the shock and grief have passed too. We will gather for his anniversary celebration tomorrow with sadness but also in gratitude for the person he was and the impact he made on so many. While my emotional turmoil has eased, my health problems continue. Unfortunately, my back pain is one thing that has not changed since exactly a year ago.