Spinal stenosis in the neck and pain

[MalcolmCClark]

Hi everyone.

I have stenosis in the neck. I get sharp pains through the base of the neck with numbness, pins and needles and finger tip pain. I have restricted movement in my neck and cannot lie flat. I could not even be put in the head brace for my mri scan. I have been under an orthopedic consultant for sometime who was looking at decompression surgery to help my symptoms but since another consultant has taken over and Kings College refusing to operate I'm left in pain and discomfort. Has anyone else had similar problems and what treatment has been given. Oh and I have swallowing difficulties and a hoarse voice which the mdt team claim are caused by something else.

I have been referred to pain management, physio and ENT. I have already tried these avenues in the past with no improvement. I am on sevredol fast acting morphine for the pain which is having minimal affect.

I am not expecting any improvement by revisiting physio, pain management or ENT.

Can anyone think of other ways to help my condition?

I should also say that with liver, heart and kidney problems most drugs are off the table and/or I suffer with severe side affects.

Yes not an easy problem to resolve.

So I'm asking for any advice that might be out there. I live in Medway, Kent, UK

[Defenders]

Hi Malcolm in Kent, I’m Isobel in North Wales! A very long time ago, I was prescribed a drug called Dosulepin by a pain consultant at a NW hospital. I still take it and it, Dosulepin, was called an ‘old school’ drug by a local GP. I don’t care, if it ain’t broke, don’t fix it! It is labelled an antidepressant but it has other qualities, it numbs the osteoarthritis in my neck. I now take Gabapentin as my lumbar spine has degenerated severely but, hey ho, I’m still here! All the best, Isobel.

[Amkoffee]

The swallowing difficulties and hoarseness is probably caused by Gerdes. Taking a proton pump inhibitor may help relieve some of those symptoms. As for pain management the best way to control pain with pain meds is to have a long-lasting pain medicine taken at regular intervals and use a short-acting pain med for breakthrough pain. I think you're only getting half of that with what you're describing. Finally having lived with pain for 17 years I can tell you that your time and persistence at this point is best served in ways to live with the pain instead of spinning your wheels on trying to find a solution. Unfortunately there just isn't a lot of solutions out there that have a high percentage of good results (ie surgery). I find tens units do not work well on the neck however putting them across the upper back sometimes helps a little. Diversion is my number one way of combating some of my pain. And it takes a lot of work to get it to help. I use various diversion methods that works for me. I use music, I play games on my tablet, for example. And then there are just days when nothing works except tears. Good luck to you. If you ever want to talk I'm always available.

[MalcolmCClark in reply to Amkoffee]

Thanks for your advice. It is appreciated howeverI'm unable to take any PPI's as the side affects are too severe. I get severe IBS symptoms when I take any PPI's.

I shouldn't have reflux in the first place as Ive had a stomach bypass but I do. I also have borderline personality disorder which makes diversion hard to do. Even CBT is ruled out because my BPD kicks in and walls go up. I'm at my wits end because I'm getting to the point where i just want to give up. I've had enough.

[Amkoffee in reply to MalcolmCClark]

I can appreciate what your going thru. My pain has gotten so bad over the years that twice I've attempted suicide. And pain isn't my only illness. I hope you're seeing a counselor as this can be very important. I'm familiar with borderline personality disorder and can imagine that it probably creates anxiety over health issues as well. None of this makes it easy for you, does it? My thoughts are with you and I hope that things get better in the near future. Remember to celebrate the small victories.

[DianaWM in reply to MalcolmCClark]

I know this is an older post but have you considered DBT for you BPD rather than CBT it’s difficult as you know with BPD it can make other conditions more challenging to endure but not impossible with the right support I know several people with BPD really well and so I empathise and hope you are doing ok

[Tourk]

Hi Marholm I know this all to well. Mine was Diagnosed 10 years ago something that. I was admitted to hospital with sytoms of having a heart attack. Turns out it was spinal stenosis. I've been in pain from a spinal injury in 1984, and had RA for 15 -20 years so take a selection of pain killer's .

It's surprising what we can get used to over time.

They didn't want to operate on me as they said it was to dangerous. Maybe because of my other problems.

If you can walking is ment to be good, as in general Exercise. Listern to your body it'll let you know if you are doing the wrong thing, and of course if in dought talk to your doctor.

CBD oil can help as well, and if you can afford it see a Chiropractor.

Diet can help as well. Peal barly is a wonderful food for calming the nerves. The roman gladiators took it so is well known for its beneficial properties.

Take each day as it comes try not to worry about it. Days I'm stuck in bed it give me a chance to catch up on some TV, video games or reading. Other days it's a pleasure to get out.

Little steps and make the most of what you can do.

[TONKATOL]

Hi Malcolm, so sorry to hear how much pain you are in. You say Kings refuse to operate - is that because of your other health issues? I live in West Kent and in 2015 I was diagnosed with various spinal and cervical issues, with compression at C7 nerve root. My GP arranged for me to see a Neurosurgeon via GP Choices - I could go to either Kings or to Princess Royal at Haywards Heath. When I tried to book, both hospitals had waits in excess of 9 months. I have a small policy which enabled me to book a private appointment with a neurosurgeon, who also worked at Kings. He agreed to put me on his operating list and in May 2016 I had a two level anterior cervical discectomy and fusion. Although this helped with some aspects, I continued to have pain in my neck and shoulder and down through to my lower back. Scans confirm disc degeneration and protrusion in my lower back but not suitable for any surgery. I have since had to give up a job that I loved and live in constant pain. I have morphine patches and take pregabalin and duloxetine to ease the pain. When I was first prescribed pregabalin back in 2017, it didn't help at all. However, at the end of my tether late last year, I gave it another try and it does have some benefits. Unfortunately, opiates are now not regarded as suitable long-term solutions and so I am going to need to reduce and then cease my use of these .

Amcoffee has a very valid point when saying that, instead of trying to find ways to solve the pain issues, you are better finding ways to manage the levels of pain. I say that whilst knowing that I am still not in a position where I can do the same. I am 53 and overweight and my current aim is to lose weight and then arrange to see the same neurosurgeon to see if there really is nothing that can be done to solve any of the problems. The neurosurgeon I was under specialises in minimally invasive surgery and different ways to combat pain - I just feel that there must be something that can be done. The past two nights I have been lucky if I have actually managed 2 hours sleep each night due to pain flare up - last night I resorted to taking diazepam to try to ease the pain a little, along with a heated cushion etc but could still not get into a comfortable position so that I could sleep.

I hope you find a way to move forward with your pain - either by seeing a different professional prepared to operate, finding a better combination of drug therapy or by accepting your pain and finding a way to pace yourself and manage on a day by day level. However you move forward, I wish you all the best.

[MalcolmCClark in reply to TONKATOL]

Hi and thanks for replying. From what I can gather the neurosurgeons do not believe that their will be any real benefit from having g surgery and obviously the risk is high. Having seen some spinal fusion surgery on tv which was pretty graphic and a lot more involved than the surgery I was facing, it was a wake up call to what I could have faced. My original surgeon was keen on the surgery but when my case went to Kings they for some reason did not read the mri results in the same way so refused. Yes I am frustrated. I am being referred to pain management who I have seen twice before. Last time they put In writing that they never want to see me ever again. So I shall wait and see. Yes I'm on sevredol 20mg morphine 4x a day with paracetamol. I cant take any other pain meds because of adverse reaction and because I have liver cirrhosis, severe kidney stones and AF for which I'm waiting on a heart ablation. Physio has always been a waste of time and CBT is a waste of time because I have borderline personality disorder which puts up mental blocks. So yes I will go through the motions but expect nothing to help. I am expecting them to try and take me off morphine but as I cant take anything else I dont know what they will do. Oh and amitriptyline is also a no no because of adverse reactions again.I'm expecting a verbal battle.

I have lost weight as I have had bariatric surgery but losing weight has not eased my neck problems. If anything it's worse. I have experienced full loss of feeling in my left arm from shoulder to fingertips. It became a dead weight. But this has been ignored. I have numbness and pains and needles in my finger tips and has now gone further as my fingertips are painful. I use a keyboard all the time at work so my fingers are in constant pain. I have severely restricted movement in my neck and cannot lie flat to the point they could not use the head cradle when doing the neck mri.

All I can do is wait a year then try again and hope the doctors have changed. This time I didnt even get to speak to a doctor. My case was dealt with by clinical assessors who are glorified physiotherapists.

I'm sorry but telling me to ignore pain when it's like a red hot poker being shoved through the base of my neck will receive a serious verbal response.

I did have a lower back spinal decompression which has meant that my lower back pain is getting no worse so that's a small positive.

I do know how you feel and all I can say go back to your doctor and demand they resolve your pain issue. Your quality of life is severely impaired and its inhuman to expect you to live your life when experiencing such severe pain.

Good luck.

[TONKATOL]

Thanks Malcolm. I do understand your frustrations with the limits of which medication you can take - due to having acute renal failure in my early twenties, I cannot take non-steroidal anti-inflammatories, which rules out a number of medications.

My neck pain originated from an RTA in the late '80s when I was in my late teens. I had a shunt at a roundabout when my head was turned to the right. Taken to A & E, xrays showed a suspected fracture and I was put in a rigid collar for 12 weeks. I have had so many different treatments in the subsequent years, including Botox, in the days before it was used as a beauty treatment. Like you, the pain gradually spread from my neck, across my left shoulder and down my left arm until it affected my left index finger with pins and needles and tingling. I am left-handed, which obviously aggravated the problem and I used a computer all the time. I did have non-steroidal injections into facet joints in my neck at one point and they really helped for a few years. Unfortunately, it was when I had more problems and requested another appointment with the Pain Clinic that they discovered the extent of the problem, which is when I was referred for surgery.

The main benefit of surgery for me was that, where the pain and weakness was beginning to shift across the right of my neck and my right arm, that is now fine and I have no problems with my right arm. Over the years I have had physiotherapy, seen an osteopath, seen neurologists, neurosurgeons, orthopaedic surgeons etc. I had a great Pain Consultant around 2010 and found the treatment at the Pain Clinic really helpful. However, by the time I saw him in 2017, all he could say was that I really had to pace myself, that things were only likely to get worse and that I had to take on board what I had read from The Pain Toolkit website and not just read it but actually practise it. Essentially, apart from suggesting pregabalin and recommending that I reduce my use of opiates, I should just listen to my body and not force myself to do too much. He signed off by saying he would be happy to see me again in clinic but that I would need to be re-referred. My GP did this in May 2019 and in August of that year I attended a Pain Education Session. This was a complete waste of time but, without it, nothing would be done. Forms completed during this session then determined what course of action would be taken. I eventually got an appointment with the Community Pain Practitioner (a specialised nurse) in August 2020 - when I was told she would write to my doctor to change my medication and reduce the amount I was on! As this was during covid, it was a telephone appointment and, since then I have had another 3 telephone appointments. One Practitioner had the wrong notes and none could really offer any help, so I was discharged. This is why I am now trying to lose weight and then see the neurosurgeon privately - I wouldn't be able to afford any treatment privately but am hoping that, should he agree to treat me, he will add me to his NHS Waiting List. Meanwhile, I live from day to day, feeling like I am useless and just exist. Thankfully, I have a husband and four children who keep me going, without whom I wouldn't even be able to leave my home.

Please ask to see a different consultant - if you are lucky, you get the one who actually cares and, whilst probably cannot understand the pain you live with, at least wants to help.

[MalcolmCClark]

UpdateFebruary 2024

I am on the waiting list at Kings neurology, to remove a bony spur from my spine which is impeding my oesophagus and makes swallowing difficult.

Stenosis has been ruled out.

I still have severe neck pain and restricted movement so I have once again been referred back to the pain clinic via neurology at my local hospital for nerve blocks in the neck. Cortisone injections have already been tried and failed.

I am seeing an osteopath who has been brilliant and who has given me back some neck movement and helped recovery for a rotator cuff repair.

I am also waiting on my second cardiac ablation at St Thomas.

I am also having a colonoscopy tomorrow 01/03/2024 because of bowel and colon issues.

In addition I'm also under the local mental health team and the bariatric psychologist at Guy's.

I'm really struggling with my self management of my conditions and holding down a job.

I'm just struggling through each day as it comes.

I'm still on morphine sulphate 20mg 4 times a day and a small dose of gabapentine which does nothing. I'm taking co-codamol 30/500 for severe headaches.

I'm on rivaroxaban and numerous supplements and Furosemide 40mg.

It's a lot I know and I keep being told that others can't believe how I keep going and still working.

Work gives me that reason to get out of bed.

All I want others to know is that no matter what you be suffering from, there are people here who are with you all the way.

Talking about everything is a saviour.

Keep well everyone