I suffer with Severe Spinal Stenosis. I’ve already had Laminectomy (Decompression) surgery which only worked for about 3 months the pain then returned. This has been going on for the last 5 years and, unfortunately, in the meantime I had to have a Triple Heart Bypass and Mitral Valve Repair which has now progressed to Heart Failure as a result I’m not able to take normal pain relief. The Pain Management Consultant tried me on Tramadol then Pregabalin without success. I’m now at the last stage of having to use Oramorph (Liquid Morphine) to try to relieve the pain. Saw the Consultant today who proposed Lidocaine Patches!
Unfortunately he then went on to say that the funding for this medication has been stopped!
Does anyone have any experience of this treatment as to whether it’s effective or not. He then went on to say that it can be funded by the patient but you still need a “Private Prescription “.
He has also referred me for an urgent MRI scan for suspected Cauda Equina.
Any advice/guidance would be greatly appreciated.
Kind regards
David
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Davewm
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I get them on prescription for severe lumbar pain as I cannot take any aspirin based pain killers due to stomach issues.I find them really helpful especially when at work
Hi Dave, fortunately for me I live in Scotland were prescriptions are free and yes I do get an NHS prescription for them monthlyI highly recommend these patches as I said I cannot take any antiinflammatory meds, I also get nefopam tablets that I take along with paracetamol for the pain
Having had impending cauda equina which is the slower progressing version, spondylolisthesis and spinal stenosis etc, I ended up having emergency surgery as my numerous bladder symptoms, leg, foot & back pain, numbness etc very quickly escalated . Have you such symptoms or “saddle numbness” ?
Thanks for your reply. I’ve already had Spinal Surgery and I was told I couldn’t have further surgery due to my Heart Problems. I paid privately for a second opinion which, unfortunately, was the same as the first.
I’m sorry to hear that. Be vigilant with your cauda equina symptoms, any sudden changes or escalation I suggest that you go to A&E. Apparently not all medics are aware of the symptoms & potential outcome of this rare condition, there is a card outlining the above that should be available in doctors’ surgeries for the patient & medical professionals, it’s worth finding one.
I’ll see if there is information about one online & post a link if I’m successful.
I use lidocaine patches for my psoriatic arthritis it’s prescribed but you can also purchase lidocaine patches online or pharmacy…. Salonpas has a patch that 4% lidocaine and thats the strength my doctor prescribed.
Im in the US and first box of lidocaine patches were through my doctor but the pharmacy/ Amazon salonpas lidocaine patches I paid for … both were equal as far as strength of lidocaine.
I use 2 everyday . One on my shoulder until I have surgery and one on my back for spinal stenosis and I swear my them. I also use pain meds twice a day to take the edge off but they do kinda numb it for me at least
Someone is telling you porkies, my pain management consultant recently started to prescribe them to me, on a normal NHS prescription, but via the hospital pharmacy only.
all I can say is try a pack. If your in the pain I’m thinking you are (I have similar issues) then it’s worth one private prescription to find out.
I used lidocaine for another issue and they were brilliant. While the cost is an issue, granted, it’s something you could keep for a more active day or acute phase where life just isn’t worth living. So sad they’ve been removed from the NHS. I haven’t used them for years so was unaware of the ludicrous decision.
There’s always health tourism to consider? Do you still manage to go on abroad holidays? I spend 50% of my time in Spain and I can tell you their cost of private medicines is far cheaper than the uk. Might be a thought next time your thinking of getting some sun. If you could take a week or two in Benidorm it is chock full of private hospitals and drs. Take copy of your medical stuff (or make sure ur nhs app has full access granted) and I’m sure you’ll be surprised what could be offered to you. They are very pro medication for health issues and I haven’t found the sorts of restrictions on heavy meds you find here in the uk. There is even the option to go to a private, get what you need prescribed then take your NHS global health card to a local state dr and often they will issue a prescription for you to honor the private dr. The upside is as a uk tourist with your global health card you will get 50% off the cost of the prescription.
Food for thought but hope I haven’t mentioned something utterly impossible to you 🙏🏻
Unfortunately I’m not able to travel very far now due to the numerous health problems - I had to cancel the last holiday abroad as I couldn’t get any insurance (not that I could afford).
One of the posts details the patch they use from Amazon so I’ll probably try those.
Hi David. My sympathies as you cope or at least try to cope with spinal cord pain. I take the pregabilin amd over the last five years have taken Paediatric drops CBD 100 .5ml twice a day. I started slowly on .1ml gradually increasing to find to my amaze,ent that the above dose worked. The pain does not vanish so much as fades so that life is better.Maybe it would go if I increased the dose so it is my choice.
Initially the drops had THC in them. I reacted by having rotten dreams and nightmares so deleted the 'stoning' factor. CBD ( non-stoning part Marajuana) can be really good for neuropathic pain though I am not sure of your legal processes when it comes to medicinal producyts containing this.
I have also met briefly a woman who had a spinal-stimulator inserted for her pain. She felt it was really effective. There are other options that are ok with your heart issues.If your pain specialist is not able to cope with these ideas try a younger one who may be more aware of the latest research, medications or other treatment.
Thank you so much for your reply. Following various Consultants assessments I was refused Spinal Cord Stimulation Surgery. My main Pain Consultant is the one who does that procedure and he said he didn’t think it would work due to the nature of my Spinal Stenosis.
I’ve tried CBD patches but I don’t think they were strong enough to relieve the pain.
My wife suffered for years with back pain and eventually she was given a procedure called Denervation and she has been pain free ever since.
Once again my chap said it wouldn’t work. I’m in the UK so I paid privately for a second opinion but, unfortunately, the Consultant agreed that due to my Heart Failure he wouldn’t advise further surgery.
I’ve paid privately for Lidocaine Patches which I should receive in the next few days so I’ll try those.
Once again thank you for taking the trouble to message me and I wish you good health or as good as it can be.
Some pain clinics give lidocaine infusions. Have you considered lidocaine infusions as an option? Your GP would have to refer you to a pain clinic though, and waiting lists might be long.
I get lidocaine infusions at a pain clinic every 3 months via my pain clinic. I used to be on lidocaine patches but my GP stopped them a few years ago as, frustratingly, a study showed they weren’t effective re pain relief so the NHS doesn’t prescribe them via GPS anymore!
Hi, yes, I’m under an NHS pain clinic in England. I was warned that the option for lidocaine infusions is going to be phased out within 2 years though. I guess it’s the same lidocaine study that is causing issues for both patches, and now infusions.
A private prescription for lidocaine will most likely be the only way forward once NHS lidocaine infusions are phased out - unless one has a team that would continue the treatment against the NHS recommendation (ie they can see it’s beneficial to the patient).
Hi. I have the same as you. My workers compensation doctor here in Albuquerque cannot find a spine surgeon. I have my nerves compressed on my lower back, I do have real bad leg pain and now going to my arms. My cauda equina is 60% and getting worse. Any suggestions on where I can find me a back surgeon, that accepts workers compensation, I am desperate. I had surgery in 2003. They put rods and screws on L1-L5, S1. Now the hardware needs to come out, it’s imbedded in my skin and hurts. I’m sorry, you must have pain too. All we can do is keep mobile if you can. That’s what I do until something comes up.
Hi from New Zealand. Are you able to find a surgeon? Google for surgeons in your state or neighboring states. My GP found mine because he lectured him at University. Try. Spinal units AZ well. I don't really understand your workers comp etc. So no comments about that. I understand your desperation. I moved countries to Australia to get a diagnosis so then the surgery. Keep trying even if you find some philanthropist who could pay for you. Take care.
Hi Dave. I have been seeing a pain management doctor for almost 4 years for lower back pain here in the US. She is an anesthesiologist and controls pain by working with the nerves of the body. Stenosis causes inflammation and steroid injections are good for relieving that. She has also performed Radio Frequency Abalations on my back in the L4-L5 and L4-L3 area. The electric pulses deaden the nerves and kills the pain and that generally lasts 9 months to a year. I also have a prescription for Hydrocodone 10/325 tablets twice a day.
i am in england. i have fibromyalgia, arthritis in both hips and both sacroiliac joints and peripheral neuropathy (diagnosis not 100% confirmed re PN but that's what the pain consultant thinks it is and all the symptoms match). i have pain 24/7, in the entire body, despite all the pain meds (none of the pain meds, various combinations, highest possible dosages etc have worked to provide any relief)... my mobility is significantly affected and i am pretty much housebound other than to attend essential hospital / medical appts.
so i have asked for a lidocaine infusion and been told that the funding has been withdrawn. i asked them to consider funding it as part of the IFR process and they said no. the pain consultant that i saw is a fan of the injections straight into the joints (steroid injections?) and when i asked for a lidocaine infusion at my appointment late last year, he made it clear that he wasn't a fan of it and that it wasn't his specialism. when he said no to the IFR request, he said that the evidence is that they are not helpful for any of the conditions i have.
i have done some research and there are 8 hospitals in the UK where they are currently providing it as an NHS funded treatment and their guidelines show that this will be available until some time in 2025 or even 2026 for some. For one of them, the review date is March 2024 and of course i dont know it it will be renewed.
their guidelines indicate that studies have shown that lidocaine infusions help relieve pain in people who have: • Pain in several parts of their body that is not being helped by pain-relieving tablets (opiates). • Pain that is so widespread that pain-relieving injections are not a realistic option.
It is used as a therapy for patients with complex regional pain syndrome, neuropathic pain or chronic pain that does not respond well to other treatments, and it essentially works by decreasing both spontaneous nerve activity and the spread of pain signals in nerve fibers. In other words it quietens the misbehaving nerves, thereby reducing the pain.
you may want to speak to PALS (which i have done). they are in the process of speaking to my consultant as there is such a thing as a hospital to hospital referral process. this means that if your hospital / PCT doesnt fund the lidocaine infusion (maybe that would work similarly with the lidocaine patches so you could check ask PALS too?), they can refer you to a different hospital where the treatment is funded.
only thing is that you have the right to be referred but the hospital you are referred is under no obligation to take you on as a patient if their funding is tight or if the wait list is so long that it could impact badly on the wait list for the patients within their PCT.
the cost of a lidocaine infusion is far too high for me to afford privately but in the for the NHS, this is a relatively low cost treatment - we are not talking about hundreds of thousands of pounds, lengthy hospital stay, after care or anything like that.
i think my consultant is making it personal in terms of the lidocaine infusion. he doesnt believe in it and he therefore doesnt think i should get it. he'd rather i keep taking opiate medication that we know for a fact doesnt help, and has not stopped the peripheral neuropathy symptoms deteriorate over the last year. i think it is despicable for someone to have decided to go into pain management as a specialism to treat a patient in that way. but anyway, sorry, i am just at saturation point. i thought i would share this in case it can help.
I’m so sorry to hear of all your problems. Thanks for sharing your experience with me it really is very debilitating to be in Constant Pain.
I saw my GP on Friday about my Heart Failure and mentioned that the Pain Consultant had said Lidocaine may help but he wasn’t allowed to prescribe it.
She was really upset and concerned on my behalf so she said she would prescribe Lidocaine Patches under a different Trade Name that she knew of and hopefully I will get them on prescription to try. She admitted she may get into trouble but didn’t seem too bothered.
As I said in earlier posts the only Pain Relief that’s now available for me to use (due to my Heart Failure) is Oramorph (liquid morphine) which is not ideal.
I do hope you’ll find some relief in the future and thank you once again for taking the time and trouble to reply to me.
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