In 2017 I had a Laminectomy for Severe Spinal Stenosis in L3/4/5.
The operation was successful and for 3/4 months I was completely pain free for the first time in years!
In 2018 I had a bad fall and this resulted in having a Rotator Cuff Repair which was successful but by now my spinal pain was back to my level prior to my Laminectomy!
In 2019 I had 9 hours of Open Heart surgery - which was a Triple Bypass and Mitral Valve Repair. This was reasonably successful but the Mitral Valve still has a slight leak.
In 2021 I was hospitalised and diagnosed with Heart Failure.
The Spinal Consultant was reluctant to operate a second time due to the Heart problems. After 2 further MRI Scans and Facet Joint Injections my case was discussed in the Multi Disciplinary Team when I was told I’d be a good candidate for Neuromodulation (a Spinal Cord Stimulation Device) so I was referred to the Pain Management Clinic.
The first Consultant said Neuromodulation was not a good option. However after 6 months of worsening pain a second Consultant said it WAS a good option. Unfortunately he’d been drafted in from St Bart’s to help and by the time of my next visit I was back with the first Consultant who said it wouldn’t work. He offered me Facet Joint Injections again. I had 6 injections 6 weeks ago and they, unfortunately but predictably, have failed to work.
At the follow up appointment he said there was nothing else available and gave me details of classes on how to “manage” pain. (Just a further note to say normal painkillers are not advised due to my heart problems.)
If you’ve managed to read this far - thanks for doing that. Does anyone have any thoughts/advice on my options as it appears I’ve reached the “end of the road”
Kind regards
David
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Davewm
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Hello Dave, I can only pass on my sympathy for the situation you find yourself. Is it possible you could ask to be referred to the Bart hospital consultant? Just a thought considering things haven't worked out for you as you will probably have lost a lot of confidence in your current consultant. Living with pain is so depressing.
Thanks for taking the time to read my post and for your sympathy extended.
I sent an email to the consultant at St Bart’s some months ago but had no response but it’s certainly something to look into again. I think I may go through the PAL’S.
Prior to my last lot of injections I contacted them to see if they could make sense of the different diagnosis. The Pain Clinic lead rang me and said that if I wanted to change the consultant I would be put to the back of the waiting list. ( I’d already waited for 12 months)
He suggested I had the injections and waited to see if they would help.
Thanks for you advice I will contact PAL’S to see about being possibly referred to the other consultant.
Good move! You have to be proactive and explore every avenue possible. At least you sound as if you gave the ability to do so. We only have one life and just want to enjoy the freedom of being relatively pain free. Let me know what happens next.Good luck and try to enjoy some Christmas spirit.
Blimey Dave sounds like you’re going through some serious stuff. I can’t offer anything apart from sending you good vibes and I hope things get sorted for you soon, mate!
Hi Davewm, Sorry to hear you are having such a rough time at the moment, living in chronic pain is no way to live.
I would 100% recommend going through PALS and also don't forget that you have a say in your treatment and you are also entitled to a 2nd opinion especially as the one consultant you saw felt you where a good candidate for the specific treatment. Even if it means going down the waiting list may be worth it in the long run or could you not see another consultant at the same hospital.
I've had loads of issues Orthopaedic wise and I was switched between consultants easily with no issues.
Your other option is to organise through PALS to speak to the department manager who has the ability to organise an appointment with another consultant in the department.
I was in a very very similar position to yourself by a failed back operation 37yrs ago followed by 7 further operation which left me crippled in pain to the end result couldn’t even get out of bed.
I ended up like this from a surgeon cutting the spinal chord by mistake in an ordinary prolapse disc op. Followed by a metal fusion then due to degenerate disc syndrome which they put in plastic fibre discs. Then 3 months later went back to consultant as I was in more pain than ever. After another 2 months they did another MRI only to find one of the screws had come loose and had been rubbing on a major nerve for 6 months before they allowed this MRI.
Anyway I was in so much pain they suggested stimulater to be inserted to relieve the pain. It was a little bit better which got me out of around 50% if the pain. This was after 30 yrs of me being on Oralmorph and 18 pills a day.
I wouldn’t say I was pain free for a year after which I had a major fall to which they said they could do nothing further and referred me to a pain specialist and clinic.
So after telling you a very brief history when finally I ended up in such diabolical pain again, the specialist then decided that the last thing he could try was Medtronic pump which is inserted in the abdomen attached to a tube into a catheter which dripped Hydromorphine (a very strong morphine drug) which finally dripped direct into the spinal chord.
This finally was the answer to my prayers, so it’s called a MEDTRONIC MORPHINE PUMP which I pray would be the answer for your pain or at least might be worth looking into!
I wouldn’t by far say it’s left me completely pain free but has made a massive difference. Good luck David and wish you well xx
It's interesting to me that both doctors came to their conclusion without doing the trial first. In the US a trial is required before the actual placement is done. I've had the trial and found it did not work for me. Some suggestions for pain control... a TENS unit (check with your Dr first due to your heart condition,), Gabapentin or pregabalin. (both work well for nerve related pain), Excedrin. For some reason the combination in this pain reliever (Tylenol, aspirin and caffeine) seems to help me more than any of the other OTC pain meds. And for me the thing that works the best is distraction. So, for example instead of laying in bed with ice or heat on my back I may do just that but also do something that distracts my mind from the Pain. But usually I will play games on my phone, write letters to my penpals, call someone to talk about anything but the pain I'm in. I also suggest making a list of distractions for you to refer to when you're in pain. Because it's hard to come up with anything when you're in that state. There is also a distraction technique that my therapist taught me and it goes something like this. Think of 5 things you can see in your surroundings, 4 things you can feel, 3 things you can hear, 2 things you can smell and 1 thing you can taste. I actually got a basket and filled it with things that cover all of these. For example, a piece of silky material, a small container of perfume or lotion that has a pleasant smell, a list of positive affirmations, candy, Etc.
If you can afford it, go private and have what the the man from Barts advised or simply ask for a second opinion on the NHS. You are entitled to one. Good luck xx
Hi Dave. I'm in the U.S. but also have severe spinal stenosis. I was getting shots and had ablation done. In the past it worked well but lately the shots aren't working and the ablation didn't work this last time. I am petrified to have surgery and don't think I will do it. I had a thoracotomy for a Bochdalek hernia on my right side of chest and 3 years later the hernia is back and having complications. Went to one of the best places possible to speak with a Thoracic Surgeon at Mayo Clinic. He said he wouldn't do surgery on my chest to repair it as he wouldn't know what he was getting into and he believes my lung is sticking to my diaphragm. So living with that nerve pain. I'm going to be 75 so see where he is coming from. But that's why I am so nervous about surgery on my lower back. I can't take any pain meds as I get stomach ulcers so I've turned to smoking medical marijuana and it does make a difference in my pain level. I know it's not legal where you are but are doctors allowed to prescribe it? Also I have a brain tumor (inoperable) and add an aortic aneurysm that seems to have gotten bigger so that's a watch and wait game. I do feel for you. It's so hard to have chronic pain and unless people live with it they have no idea how difficult it is mentally and physically. My husband had a quadruple bypass about 5 years ago but is doing really well. I pray that you are able to find some relief for your pain.
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