spinal stimulators supplied by nhs and post spinal surgery problems please comment!
Posted , 4 users are following.
Well this is a long story I'm afraid as I have been in pain since 1992!!! I have had many years of spinal issues starting in the UK in the 90's. I never had a clear discussion or diagnosis and always felt I was fighting the system to be taken seriously. I had traction, acupuncture very basic physio and increasing amounts of painkillers prescribed for me on the nhs and eventually was issued a pair of walking sticks and a wheel chair and more or less by 2000 told to get on with it! I was in a great deal of pain from multiple sources and with increasing peripheral and neurological symptoms and weaknesses as well as bladder problems.
I was in my late 40's then and had had a very physically demanding outdoors occupation and was a serious competitive sportswoman. Dismissed continually as having degenerative problems and having fallen off a horse in 1992 and having a head injury most was blamed on that and 'to be expected with age'... I was not taken seriously with appointments with specialists being many months apart as well as long waits for any kind of investigations. I queried repeatedly side effects of strong meds and my deteriorating mobility.
I had the chance to go and work in a country with private health insurance in 2002 by which time I was bracketed disabled and crippled and unable to work in uk. I took the opportunity and thank goodness paid in to a good medical aid scheme.
I worked hard to keep fit and reduce my use of pain killers and kept going despite constant pain having been told by the nhs that I was in effect a time waster. I sort no further advice having been rejected and depressed by my experience in the uk system but then I ended up in hospital with a minor heart attack. Whilst there a very concerned consultant asked me who was looking after my back and neck... no one! So I was finally referred to a neurosurgeon ironically qualified in Edinburgh but based in South Africa.
What a difference, he sat down with me with scan pictures, a very different experience to the uk, and arranged all sorts of tests immediately showing me exactly what was going on and explaining fully. To cut a long story short it turned out that my spinal cord was being compromised in several places and the nhs bulging discs were in fact completely disintegrated dried out gas filled and fragmented pushing into my spinal cord. The whole of my cervical and lumbar spine was a mess with arthritic spurs and collapsed bone trapping nerves and plus I had compression fractures in my mid back (dorsal). When I panicked and thought I should rush straight back to the UK he told me that the nhs couldn't / wouldn't be able to provide the full surgical options that were available if I remained and rather stay for surgery then return to the UK when everything was stabilised and treatment was just supportive long term.
Some of the surgery I underwent usually was only normally applied in cases of severe trauma. I had several operations starting in 2005 through to 2009. Each time things improved I had a brilliant couple of months then a fractured vertebrae or collapse or shift in my spine when I was weight bearing set me back. We decided to be cautious and didn't rush into any of the surgery but events overtook me and I ended up with 7 surgeries including cages between vertebrae inserted anterior and metal work posterior as well as various screws and wiring in both my lumbar and cervical spine. I would not wish any of what I went through on my worst enemy and would strongly advise extreme caution when any surgery is advised making sure that it is the last resort and understanding that there is no going back. I was warned that my problem would be ongoing as we fixed some levels and put more strain on others.
I'm convinced my situation would have been very different if I had had proper help from the nhs in the beginning. One of the conclusions during all this was a firm diagnosis that I have severe osteoporosis plus galloping arthritic changes, spondylosis and goodness knows what else none of was then ever been acknowledged in nhs reports which only commented vaguely on degenerative changes and bulging discs.
I came back to UK in 2012 hoping that the nhs would then take up my continued support. By then I was dependent on a regime of medication which had taken a long while to level out and work well for me as well as hydrotherapy, biokenetics and physiotherapy all helping me with my mobility and pain control.
What can I say the nhs has again blown me off.....I have a constant battle with prescriptions being changed and fighting to retain a good plan for pain control. Although the nhs seems to be happy to just keep loading me with more and more drugs they don't seem to have any thought for all the very many side effects ( for which there are just more drugs) or at any time take into account my quality of life. In five years I have seen the neurosurgeon barely a handful of times and have exchanged no meaningful discussion or update of my situation. MRI reports take a year to be considered and are then out of date but after much fighting and years since the original suggestion because I have moved recently and the expense of my on going drugs has been an issue because I am now registered on the Scottish side of the border the pain clinic is trying to put me forward for a spinal simulator so that my controlled drugs (Fentynal patches, Oxycontyn / Oxycodone slow release and top up liquid and Ketamine) can be reduced. I have just however been advised that the waiting list to even see someone in Newcastle about having one is enormous despite me being referred originally over 2 years ago by the pain clinic.
Meanwhile I have been trying to research and am very confused about whether anyone has actually had success using one. I have recently insisted on seeing my last MRI report from October 2016...yes that's how long it has taken and see just a report of my instrumentation and fusions but also that they now see signs of myelomalacia at C6 plus vague comments about more bulging discs in my lumbar spine. I have not seen the consultant since that MRI hence why I insisted that I see some kind of report! I don't have a clue what that means but they have commented that I am a candidate for a stimulator. The pain clinic got a copy for me but it is just of a short letter to a GP.
I have forgotten what it is like not to be in pain, my mobility is very limited and walking badly affected, it would be easier to just give up and use a wheel chair full time. My pain is described as intractable my life is limited in all sorts of ways by it. I have constant ups and downs with I assume drug withdrawal, certainly linked to patch replacement and other medication timings during the day. My GP is not particularly interested or supportive and all and any problems are constantly just written off as being to do with my back surgery and / or drugs.
UK doctors just don't seem interested in me as an individual or have time or inclination to explain anything and now that I am in my 60's and not able to work I just seem to have been written off. I don't even qualify for any ongoing physio as I am not acute even though the doctor agrees that it would assist my pain control and release muscle spasms.
One of my biggest concerns now is that over the last 4 years I have had increasing rectal / bowel problems adding to my long term dysfunctional bladder. All the advice I have had is that considering my spinal and neurological issues I am not a good candidate for any remedial surgery which may not help in the long term, so basically I just wait until things are critical in that department and then maybe the nhs will do something! I already have to manual assist that function... again appointments with colorectal team are many months apart and have offered very little assistance mostly at nurse led clinics of a very basic nature. Does anyone have any advice?
I am sorry to impose such a long story but for anyone who has bothered to read it ( and believe me I could have included much more medical stuff) I really have never had the chance to talk through my situation with anyone with similar experiences so reading some of your forums and experiences has been a great eye opener for me. I would like to know if anyone else has a similar story to tell.
Anyway what do you think about spinal simulators, I don't want to end up with some uncomfortable buzzing distraction and get involved unless there is a real possibility of significant pain reduction. Is it just the nhs trying to save money and prescribe me less painkillers because they now realise that they have people like me that they have made opiate dependent which is not now P C....
My advice is if you have spinal problems with no clear diagnosis is kick off and insist that someone takes you seriously so that you don't get fobbed off for years like me and find a consultant who will actually include you in decision making and show you all the pictures, results etc. Overseas you are automatically given copies of all xrays scans and tests because you have paid for them and are 'the client'. Consultants seem to actually have time to get to know you and your situation and of course you are free to shop around get second opinions etc. Yes the nhs is free (well actually we have paid into it all our working life) but it is obviously increasingly often no longer able to support people with chronic problems properly. Sometimes I wish I had some kind of dramatic illness with a well known name as back pain seems to be associated with malingerers and not taken seriously!
Regards to all who are suffering back and neck pain for whatever reason....... I hope you have a better time with it than me.
0 likes, 3 replies
mike09523 Chrysy
Posted
Hi Chrysy,
All of my cervical spine problems took ages to sort out. As it all started after a fall and striking my head against a wall you would have thought the clues were there, especially when I kept emphasising that I had complete loss of strength down left side of body.
Anyway 6 years down the line I still have multiple problems at c4 c5 c6 c7 but would need complete fusion of cervical spine, which my neurosurgeon has refused to do.
My bladder and bowel problems are a constant bane. I take tamsulosin for the bladder which relaxes the bladder spincter enabling me to urinate and laxatives to help with a lazy bowel.
My pain pathway took about 13 months to sort out and I am fighting the drugs effects every hour of the day. Any physical therapy on my neck will paralise me, if I fall or trip it could well be the same. To look at you would wonder what's wrong with me as I look perfectly fine. Hope you get something sorted.
Mike.
mike92384 Chrysy
Posted
Chrysy...From what I've read, you've been through a 'war'. People must learn to speak up. WE are the doctors' employers, not the other way 'round! If it weren't for us, they'd have no jobs. Everyone has the right to ask questions, & not be fobbed off. If one has the feeling of being dismissed, then they need to become stronger & insist on knowing what's going on. I don't know what you referring to when you said "overseas you are automatically given copies of all x-rays because you have paid for them". Here in Canada, this is not the case. We are NOT automatically given copies. X-rays are never given to the patient, even if the patient were to ask for them. A written report of the result can be obtained by the patient if requested. It is not automatic. In fact, there are a lot of places that are very reluctant to give a copy of the written report to the patient, because they don't want the patient looking up things on the internet. That does not sit well with me. I insist on a copy...i'ts my right..& if I choose to go on the internet, that's my business. I do wind up getting the copy of the written report! lol lol. Sometimes there's a small fee, sometimes, not. Doctors have the rule of thumb that if there was anything of concern, they'd call you in well before the appointed followup time. I'm someone who needs to know., so when I do attend the followup appointment, I'm armed with questions, & can ask about certain points.
I was astounded to read of all the medications you've been taking. These days, doctors are extremely reluctant to prescribe opiots. The small number who abuse the medication are the ones blocking it for those who truly need it, but in all honestly, sometimes there are other things than can relieve the pain. Taking pain killers for a long time is asking for trouble. Nowadays, doctors will only prescribe say, 6-7 pills, & if they find you've gone through those before the estimated time, they are highly suspicious & if they believe there in fact has been abuse, the patient has run the risk of the doctor/patient relationship ending. Even Tylenol 3 isn't as readily prescribed as it once was.
I have deteriorating discs in my lumbar spine, with severe narrowing at L5-S1,& a few other things. My cervical spine (neck) is the worst. There are issues with the discs there as well, but some areas have moderate foraminal neural stenosis, while one is severe. I now wonder what the Neurologist is going to say when I see him Oct. 5. I experience a burning skin sensation along the bottoms of my feet, &up my shins. He told me the EMG was normal, but I'm not uneducated when it comes to that. I know that an EMG does not test for small fibre neuropathy, & I will most certainly state this when I see him. He has not (as yet) done a skin biopsy or a doppler to rule out small fibre neuropathy. I say "not yet" because at this point in time, I want to give him the benefit of the doubt. I do want something done about the severe narrowing. The muscles in the back on my neck do spasm at times, with a twisting sensation, & I get headaches at the back of my head as well. Adding to my discomfort is the fact that along the top of my shoulders, the muscles there become sore & depending on how I sit, that position aggravates things, especially when I'm on the desktop computer. Using the iPad..no problem.
I wish you all the very best, but remember, you must be the advocate for your own health. Speak up..speak loudly...& don't take any bullsh*t!!
Chrysy
Posted
Hi thanks for taking the time to reply it's mind blowing when I see the number of people dealing with similar issues and the extreme variations in treatment and attitude that we all have experienced.
To clarify my original comments - My private medical experience was courtesy of a discovery medical aid executive plan in South Africa which provided me with copies of all tests cans reports etc unlike the NHS (UK) who seem reluctant to inform me past the very basics and with vast gaps between things happening and follow up appointments.
My first spinal surgery was in SA in 2006 and the last in 2010 but I have lived on strong pain killers ever since worrying about their various long term effects on my health and although initially I recovered enough to resume my life and work I have since become limited in mobility and with many neurological problems and poor health stacking up with increasing speed and complexity. Mostly now all UK doctors blame any health issues that I currently have on the surgery and past spinal damage although they don't seem to be able to see any obvious compression of nerves or cord currently I never really get any straight answers just assumptions that it is all linked and they are not surprised at my struggles.
I have had extensive work done on my cervical and lumbar spine and I am definitely paying the price! The cervical damage seems to be the cause of lots of ongoing stuff which I was not fully prepared for... My current challenge is that to add to the bladder problems I have had since the beginning over the last four years I have had increasing rectal / bowel problems, I think the pain (opiate) drugs have escalated those. Now I am shocked at being told that after lots of other experimentation the only solution to these issues is an ileostomy and I am on the surgeon's waiting list! I'm very upset at this additional set back.
I hate the roller coaster of my dependence on so many drugs with limited resultant pain relief which has got worse I think since the original surgery but at the time of the surgeries I was just happy to be walking etc and to get back to an active working life. My situation has definitely declined since I returned to the UK in 2012 and under the care of the NHS. Thank God I had so much resource available to me when I was working in Africa as I doubt, judging on my current experiences, that the NHS would have paid for all the very prompt treatment that I received there to keep me going. I was paying about a third of my salary though in Medical Aid per month which obviously became an issue when I couldn't carry on working.
I was warned at the very first op when I asked what to expect the answer was "more of the same" but it certainly doesn't get easier. I have only just realised that the big difference for me is being in pain. Being in a wheelchair and other physical disabilities can be adapted to over time much more easily if you are not in pain? When people look at you and you look "normal from the outside" it seems to me that comparatively very little empathy comes your way which is very frustrating so I completely sympathize with you Mike.
I have had the complete fusion of my cervical spine but without it my story would be very different as my vertebrae were breaking and crumbling telescoping down into each other. The cord was being restricted seen on myleogram in SA but previously in the UK I had been brushed off with vague discussion of bulging discs and certainly no offer of surgery. We tried an anterior approach first putting cages between the vertebrae which was brilliant for about 6 months with everything marvellously aligned but then I had dramatic collapse of my spine and ended up with surgery from the posterior with extensive metal work plates and wiring. All that has held well, I have wondered since whether if the UK system had helped me sooner I would have had less long term effects pain and nerve damage! I had already had the lumbar surgery at that time and it was me who wanted to only go for the one operation to start with, although the double approach was recommended, which is why things developed how they did. I think the problem you have with the surgeon not offering you a cervical fusion is that it requires a high level of skill and is considered risky. It was a lot to go through with a long recovery.
Anyway excuse my waffle this is the first time I have shared my story! Good luck to you, lots of pros and cons whatever you end up doing... although some people do seem to bounce back from surgery with apparent ease I think it all depends on the underlying problem. Someone I know has just had his long time damaged / broken hip (previously causing great pain) plated together and he is up and almost running about within a few weeks and recons was pain free virtually from day one and is now feeling great. He did however have a team of top London private surgeons working on him!! Regards