Tag: back pain

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.



 

			

			
				


	





	

		
		
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.

	


	





	

		
		
Seeking reasons to stay alive
	


	
	
	

		
I am going through some dark days. Anyone who has happened across this blog will know about my battle with chronic pain. It’s a battle I have been fighting for more than two years now, and it’s a battle I’m finding it harder and harder to fight. It frightens me to think of the number of hospital visits I have made, the number of medics I have seen, and the number of procedures I have gone through, not to mention the amount of money I have spent.


And yet, and yet, the pain is more deep-rooted and widespread now than at any time in the past. It’s wrapped around my lower back and my left thigh. It digs in and through me – and no pill, no opiad, no medication of any kind can make a dent in it.


I try being more positive, I’m trying journaling, I walk a lot, but nothing seems to make the slightest impact.


I’m awaiting news on a spinal cord stimulator, but though I want to have that procedure, I’m also scared of having it. It will mean more surgery on my already fragile body, and of course there is no guarantee that it will ease my pain. If I were to have it, and it did not work, I doubt that I could cope with the disappointment.


I know that in many ways I am lucky. I have a community that supports me and that allows me to do as little or as much work as I can manage. I don’t have to worry about my next meal or how I will pay for a consultant’s visit.


But it makes me feel guilty, too. Because I earn nothing, and my tear-filled, sorrowful presence only upsets people. I am making no contribution.


And as each day turns out as miserable as the one that went before, I wonder about my future, for I know that I cannot go on living like this. I do not have the strength. My spirit is sapping. My motivation is slipping. My faith is weak. I can’t take much more.


And so I seek reasons to keep on going. What is life if there is no happiness? Why go on if there is only spirit-crushing, unrelenting pain, day after day, week after week? I do try to hold on for the sake of my mother and my family, and because I have enjoyed being alive for the 52 pain-free years that I had, and because I want to build up the life of the community and the church.


But it’s difficult.

	


	





	

		
		
I have become but skin and bone
	


	
	
	

		
I am fading away. For some time now, I have noticed that I’m losing weight, but, despite my best efforts, I can’t stop the pounds from falling off. I have never been overweight. At my heaviest, I’ve been about 12 stones, but today I weigh just a few pounds over nine stones or 131lbs. It’s not a healthy weight.


Some people with chronic pain put on weight due to lack of exercise. I am the opposite. My chronic pain is knocking the weight off of me.


I went to the swimming pool for the first time in months last week and was shocked to discover just how frail and skinny I have become. The water from the jet pool was too strong for me, it nearly blew me away. I could barely lift my legs to get out of the water. Though there were several older people in the pool, I felt the oldest and weakest of the lot. And the most frightened too.


It’s not that I don’t eat – I do. And I love sweet things. It’s just that I can retain nothing. Day by day, pills and pain are sucking the weight and the life out of me. 


If anyone knows a good way to increase weight, that doesn’t increase constipation, I’d be delighted to hear about it. Because not only are my clothes becoming too large for me, if I don’t build up some strength soon, it will be much harder to fight my way back to recovery.

	


	





	

		
		
Another crushing hospital stay
	


	
	
	

		
After 12 days in hospital, I returned home on Saturday. Twelve days of disappointment, hope and, ultimately, despair. I am back in Limerick more broken than before I left it.


I had a reaction to the first drug they tried on me. It was being funnelled in through a little tube in the stomach area, but that area became inflamed and sore. They switched to an oral form of the drug. The pain eased slightly. I thought there was light at the end of the tunnel but after a couple of more days it became clear that this new drug was failing too. So, ever the optimist, the doc change me to another medicine, again to be taken orally. As they increased the strength of the drug every day, they reduced and finally eliminated the pills I was on. This new drug seemed only to be making me groggy, but I was hopeful that once I returned home, to my own environment, I would notice its positive effects.


Then I started being physically sick, throwing up the meds I had just taken. I was sleepy and nauseous, and all the time the back pain continued to burn me up as before. So, following a discussion with the doc yesterday, it was decided to abandon the new drug and return to my old one – the same ineffective one I was using before my fruitless hospital stay.


To say that I am disappointed is an understatement. I am crushed. The final option open to me is the spinal cord stimulator, but it could take a month before this happens. I want to have it because I will try anything to reduce my pain. And yet I am scared, because if it fails, there is nothing left. It will be the end of the road.


The doctor, like all the others I have dealt with in the past, started off full of easy optimism. “Eighty or 90 percent of people respond very well to such and such medication. We’ll get you sorted.” Then, when that med fails, he shrugs his shoulders and says, “Well, we’ll try this other one so. Up to 90% of people get great results from it, etc, etc.” And when that in turn fails, and I ask why it hasn’t worked for me, he says that I fit into that difficult tiny percentile of people who are unresponsive to various interventions. Which is so devastating to hear. The disappointment as much as the pain is killing me, literally. I’d rather docs didn’t offer false assurances but I suppose they have to be positive for the sake of their patients.


Two years ago I would not have believed that there were people in the so-called First World who had to live with chronic pain. I thought medicine had advanced enough to ensure that people did not have to suffer 24/7. But now I know that there is a vast community out there living with chronic pain, whose best hope is a few hours of relief every few months, if even that. I have increased empathy for people I see who are bent over or in clear physical distress. It is a lonely place to be.


I am 54, and I can’t imagine going on into pension or old age like this. I can’t remember what it is like to have no physical pain, to go to bed looking forward to the next day and not dreading it. The disappointment and the despair are killing me, even if the physical pain on its own won’t finish me off.

	


	





	

		
		
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.

	


	





	

		
		
One devastating week
	


	
	
	

		
The last week has been hell. I don’t know what I did or why it happened, but there has been an incredible increase in pain (from a five out of ten to seven or eight out of ten) and I cannot cope. It’s as if the fusion has come loose or the graft has pulled away, except I’m sure it hasn’t. But something has happened that feels like a knife has been plunged into the base of my back and is shooting daggers down my legs. Strong medication doesn’t even temper it. 


I love life and I don’t want it to end, but the life I am living right now has no quality, no happiness or joy. There is only sadness and tears. I don’t want to live if this is what my life will be.


All I look forward to is being knocked out. My happiest moment of the day is when I take my sleeping pill. I know I will enjoy a few pain-free hours before the pain nags me awake again, and I have to endure another twenty four hours of misery. 


Though family, community and friends offer support and solidarity, I have nowhere to turn. The medics either don’t know what to do with me or probably consider me a crank. I feel lost and beaten. 


The last two years have seemed like twenty. In so many ways, my life ended two years ago, only I didn’t stop breathing and my heart kept beating. The only thing I am grateful for is that I was there for my dad at his end, and there for my mother in her grief.


I am tired of pain and constipation and doctors and pills and hospitals. I am tired of disappointment heaped on disappointment.


I am tired of moaning and whining and self-pity. 


I am tired.