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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The Christmas I managed to upset an entire congregation

It was Christmas 2001 and I had been invited to celebrate midnight Mass in a small, non-parish church on Dublin’s north side, a place I had never celebrated Christmas before. The year that was coming to an end had been a tumultuous one, with people still reeling from the events of 9/11 and talk about yet more conflict in the Middle East.

I decided that I would talk about how at Christmas, some people experience the absence of God more than the presence of God, how they can find it difficult to feel the joy of the incarnation. I used a story to make my point. It was one told by holocaust survivor Elie Wiesel, who along with the other concentration camp inmates was forced by the Nazis one day to witness the hanging of a young boy in retaliation for an escape that had taken place. Being but skin and bone, it took the boy a long time to die. And as the child hung there, struggling between life and death, Wiesel heard another prisoner cry out: “Where is God now? Where is he?” And Wiesel found himself silently answering: “Where is God? Here he is. He is hanging here on the gallows.” 

The point I was making was that even in the darkest of times, God is with us.

As I preached, I could sense a shift in the packed congregation, an hostility almost. It was just as well that I was too obtuse at the time to pick up on this negativity, otherwise I wouldn’t have been able to finish the liturgy at all.

When Mass was over, during the recessional hymn, I processed to the back of the church to take up position by the door to greet people as they left. I hadn’t time to catch my breath before an irate younger woman descended on me. “Are you saying Mass tomorrow as well, Father?” she asked. I told her that I wasn’t. “Good,” she replied, “because you should never preach that again, especially to a church full of children at Christmas. It was totally inappropriate.” She stormed off, leaving me stunned. Not good at handling confrontation, I wanted to scamper to the sanctuary of the sacristy and hide there, but it was too late. By this time the congregation was filing out of the church through the door beside which I stood. There was no escape. 

They weren’t slow to make their feelings known. “Dreadful. Dreadful homily,” a man bellowed without stopping to talk or even look at me. Another older man said the same thing. His wife tried to soften the blow. “It was fine, Father. Don’t listen to him.” But her husband interjected. “No, he needs to hear the honest truth. It was the worst sermon I ever heard.”

By that stage I was so taken aback that I was physically shaking. Usually, I received praise for my preaching. I had never received criticism like that before. Christmas was ruined for me. I learned the painful way that people don’t want to be reminded of harsh reality at Christmas time. They want happy clappy, feel good, uplifting stuff. They want angels and mangers and shepherds and joy, and I gave them Auschwitz and public hangings. No wonder they were angry at me.

I learned my lesson. I preached many Christmas homilies in the years since 2001, and while I never danced around the challenges that confront Christians at Christmas, I have always focused on the positive. No more upsetting stories. No more graphic tales of execution. No more talk about the absence of God.

This Christmas I have been thinking a lot about the incarnation, the good news of God with us. I have tried to feel it, to sense it, but my physical pain keeps getting in the way. I feel God’s absence far more than God’s presence. All I can do is try to believe, like Elie Wiesel, that somehow God is present with me in my agony. I might not feel God’s presence; sometimes during the long, dark nights, I might doubt it or even deny it. But I’m sure God doesn’t mind. I will keep trying to struggle on, hoping for glimpses of God’s presence, hoping for any shaft of light to help me endure into another new year.

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.

Hospital blues

I am now in hospital more than 24 hours. In terms of facilities, it couldn’t be better – spacious room, big tv, wonderful menus (I might add to my miserable 62kg weight), caring staff. A few days in this place would be a lovely break were it not for the reason I’m here, which is to try to calm my pain.

A line was inserted into my stomach yesterday. It carries a strong painkiller, which should begin to ease pain after a few hours. Alas, so far it has done nothing. The pain has not diminished. It’s as if the line had not been inserted at all.

Of course, there have been the usual reassurances – give it time, don’t panic, let’s see what happens over the next couple of days. I know all that, and yet it’s hard not to feel disappointed.

I know, too, that things could be worse. I have a cousin who has been in the same hospital bed for more than a year, and who displays extraordinary resilience. I marvel at his fortitude and determination. I must try to hold onto hope, even if I have always been a glass half empty person.

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.

I want to end my pain

I never thought I’d end up like this. There’s longevity in my family. I have four aunts who are aged over 90 (two on each side) and I always hoped/assumed that, as long as I looked after myself, I’d make it into old age too. I don’t think that any more.

We never know what’s ahead of us, but I never would have imagined that, just into my 50s, I’d be crippled with pain, for which there seems to be no cure. I never thought I’d end up like this.

For more than two years I have been suffering, and despite all manner of interventions, I am worse than I have ever been, broken and in constant tears.

The doctor told me that I am on the strongest pain meds he can safely prescribe, yet those meds are almost totally ineffective. Two nights ago, after watching a football match (and thank God for the distraction of the Euros) I went to take my meds, only to be horrified to realise that I had taken them before the match. They had made no impact on my pain. 

I am supposed to be getting a spinal cord stimulator, but I cannot get any dates from the hospital for when this will happen, and there’s no guarantee it will make any difference. 

Our big annual novena begins here in Limerick tomorrow. My colleagues are all looking forward to it, but I am not. Up until last year, I used to be actively involved in planning the themes for our novenas, I used to write the booklet for each year, and was regularly one of the main preachers. Now I am on the periphery – pain-riddled, lost and broken.

I want my pain to end. I want to be free of it. There is no worse feeling than waking up early in the morning with your back on fire, and realising that there’s another miserable day ahead.

A couple of weeks ago, I had a few days of relative respite but what followed is worse than what I suffered before. It’s not worth living in agony for months at a time in hope of a few days’ respite in the future.

The only reason I have been determined to hang on all along is for the sake of my mother, but my strength is running low now and my will is ebbing. I don’t want to die, but I don’t want to go on living like this. Death is inviting. I keep thinking of the peace it would bring. Unless there is a miracle, I won’t see many more birthdays.