after 4 years treatment, physotherapy, hydrotherapy, e t c discharged to chronic pain clinic after 15months pain acute, cant sleep in bed, or walk, drive, play with grandchildren, referred to a private spinal surgeon who following MRI scan x-rays e c t diagnosed a serious disc problem requiring spinal surgery A S A P when asked said up to 24 months wait on NHS or 3 weeks privately at cost of approx. £9,000.00 which I cant afford, other than to take out a loan
treated for 5 years for hip problem on NHS ,P... - Pain Concern
Number of questions to ask here.
You say you were referred to PC and then you say acute pain. The 2 are totally different. Who said your pain was acute?
4 years treatment then discharged. From where?
Who sent you to private spinal surgeon? What is this operation he means?
And who are you thinking of suing and why?
Would be helpfumm if you could give a few more details to work with please.
4 years treatment for severe groin pain which prevented me walking more than 200m (replacement hips.diagnosed). After 4 years of physyortheapy e t c referred to Chronic pain clinic by NHS Orthophedic consultant, who had treated me for past 4 years.(both at the same NHS hospital).
After a further 12 months and having received pain relieving injection into spine.(The relief lasted 4 days)
At a follow up appointment we discussed the options available, one of which was to see a private spinal specialist (if I could afford it). We agreed that due to the waiting list on the NHS 12 to 18 months, that this was the route I wished to follow. He then arranged an a appointment with the spinal specialist.
Following a consultation ,examination,, MRI scan and x-rays. He then suggested pain killing injections into the nerve roots, which had no affect on the pain, which by now were very bad, I could not go to bed, walk and drive, I have become very depressed, and so on..
I then had a further consultation, I. explained the injections had not provided any pain relief. he showed me the MRI scan, which clearly showed two disc protruding to the extent they were touching on a nerve.
He went on to say I needed a Discectomy compression procedure, as a matter of urgency as I MAY suffer PERMANENT nerve damage. I am totally inexperienced in the legalities of negligence, however I consider the NHS should be responsible for all the pain and suffering, loss of a normal life, being unable to walk, being house bound, being unable to play with my 3 year old twin grand daughters and so on and on There is one telling phrase the private spinal consultant used which was "YOUR DISC PROBLEM IS
AT THE BASE OF YOUR SPINE WHICH MANIFESTS ITSELF IN PAIN IN THE GROINS AND THE OTHER SYMPTOMS SUFFERED". I therefore consider that the NHS consultant should have had sufficient knowledge to appreciate the pain may have been caused by a spinal problem, in less than 4 years, Please excuse my rant, but I feel so mad, having lost my business e c t
Thanks very much Pat
Can't help but do send hugs and trust you will soon be cared for in an appropriate way.
It is hard to know if this is a misdiagnosis or confusion resulting from presenting symptoms. Often chronic pain is felt in a totally unrelated area in the body than the original injury, so it may be that your disc problem has been firing pain in your hip. Which has been treated because that's where the pain was.
Maybe a scan could have been done sooner, but if you felt no pain in your spine, then there would be no indication to do one.
I think it would be very complicated to sue and may result in a lengthy stressful process which may leave you out of pocket and still on the NHS waiting list. Suing the people who are going to help you is not a good idea.
I think your energies would be better utilised by finding out how the confusion happened, if there was any and using this to bring you up the waiting list a bit.
It may be too late but a sports physio may be able to help stabalise your spine in the short term.
Thank you for your help, I would say this in reply. Firstly I have been experienced pain in my lower back and groins since the start of my problems, however the NHS Consultant did not investigate the likely possibilities you've indicated above, I stayed on the same diagnoses and treatment for 4 years, while the pain and symptoms increased, It was only after I made a fuss I was referred to a chronic pain relief clinic.
After a further 12 months and being treated with pain relieving injections into the spine (very painful and ineffective) I discussed what was the next step, he then suggested I see a spinal surgeon,( Privately) and arranged an appointment. Within 6 weeks I had an examination, MRI scan, x-rays and 2 painkilling injections in to the nerve roots.
In the follow up consultation the Spinal consultant confirmed what you said the as the disc problem was at the base of the spine, this has caused the symptoms I'd been having, pain in the groin, unable to walk
and now excruciating pain in my back and legs
I note your comments regarding to sue the NHS. However I think this may have been caused by my anger and frustration, as I'm now faced with a bill foe £9,000 bill for surgery,in 3 weeks, or go on the NHS waiting list for a further 12-15 months. Which has been confirmed by my MP and Welsh Assembly Member.
Private surgeons will often want to operate a lot quicker and for a lot more problems than NHS doctors will, so I don't know if you can really assess how dangerous it would be to wait just from the difference in waiting times. What you could do is see the NHS again, or ask to have a second opinion in the NHS and this time ask some really direct questions about how likely you are to deteriorate, how much danger there is in waiting, how you would know if it became an urgent acute problem, and what you can do to make sure it doesn't deteriorate or cause further damage while you are waiting. I'm not sure exactly what the problem is, but unless there is actual neurological damage (causing loss of function - like bladder or bowel problems or loss of nerve control of your legs, etc), disc problems don't usually get automatically operated on. You can have quite bad disc bulges and herniations without it being considered severe or urgent, and the degree of physical problem seldom matches with the pain (i.e. you can have a lot of pain with minimal damage, and a lot of damage with minimal pain), so seeing a pain management specialist who could do nerve blocks or other injections into the area may be just as good as seeing a surgeon.
As far as suing, it would be a long drawn out process, there would have to be proof that you were misdiagnosed or inadequately treated and that the long wait for treatment has caused further problems - none of which is easy to prove. Suing won't usually get you quicker or better treatment unfortunately.
Thanks for your advice, however how do you know what to believe? all I know is after suffering increasing pain, discomfort, being house-bound. Being unable to sleep, or walk very far, problems with bodily functions, which after surfing the net indicate nerve damage, possible long term.
Following letter's to my MP and Member of the Welsh Asssembly who have indicated a 12-15 month NHS waitinh list, or paying £9,000 and having it carried out in 3 WEEKS. I;m afraid I have made my choice.
Do you really want to go through the stress of a legal process ie suing? You might find it more helpful in the long-run to put your energy into trying some of the things suggested above.
I understand your frustration though.
Thanks for your advice. Your remark about frustration, sums it all up, after 5 years of gradually increasing pain, being house-bound and not being able to do normal things. I feel mad! as I consider that this could have been avoided, or mitigated by an earlier diagnoses of my actual problem.
I am a Chartered Surveyor, who is bound by a code of practice and can, and would be sued for malpractice, or negligence if I had made a decision or recommended a course of action, which had not worked, for a period of 5 years.
Three years ago I had to retire through my health problems, however in respect of my business, my liabilities continue for a further period of ten years, and I have to insure my self against such an action so besides the pain and suffering I have suffered financially through all this.
My remark about suing was made in anger, but it is a very attractive proposition, the term no win no fee comes to mind!
Hello BOB here
You say you were treated in the NHS for hip problem, forgive me for asking why at that time did you prefer to go to a private consultation, what did they say in that clinic regarding this.
Now you say that you have now been referred to a pain clinic, is that NHS ?
Are you now back under NHS care.for all of your treatment.?
What now is the prognosis for the hip are they all forgetting about that?.
One thing that interests me what discs have been damaged, could this be a problem you have had over the years with the hip caused by stresses and strains.
Above I ask these questions because I feel that now would be a good time to go back to the NHS, the Pain Clinic will arrange further tests and try and join both problems together.
In the past or now are you seen by a Private GP or or a NHS GP.?
Personally you really need to get the papers of your condition from the Private Consultant and take them to the Specialist that will see you in the NHS, they will again try and join both problems together. So the way forward now is to go back to the NHS, it may take longer, although it is hoped not too heroic.
Personally suing would only cost further large sums of money, and that possibly be what you would have paid for private treatment, and the worry would just make matters worse. Again that like all of above will be your decision.
If the Pain Clinic after tests would most probably manage to fit you in for treatments via referral to different departments.
I hope this helps, the most important thing now is to get you into a Pain Clinic, preferably NHS as if the hip is still a problem it is going to get very expensive. To go private
Please discus all with your GP and Pain Clinic they will have your best interests in mind as I am not a Doctor
I'll make my reply as short as possible and deal with your points in chronological order. All my visits to my GP have been under the NHS.
5 years ago I had pain in my both groins, visited my GP who pescribed painkiller's and creams, which did not work, saw GP again who said he would refer me to an Orthopedic consultant, but would have to wait 6 to 9 months, as I was in business I asked was it possible to see him privately, he replied he would arrange it.
I visited the Consultants clinic and following an examination he diagnosed a possible problem with both hips. He then confirmed he would see me in future at his NHS clinic at my local hospital. I received and appointment, and over the next 45 months I received various treatments e g physio, hydrotherapy. massage, and X-Ray guided painkilling injections into both groins, all of which had little or no effect and the pain was increasing.
During one of my appointments I got very frustrated, when I was offered no further treatment or differing treatments, and told to keep taking the pills, and to come back in 6 months I explained the were no results to date, and I wished to make a complaint, this was followed by me seeing another registrar under the consultant, who within 10 minutes of examining me said he considered the problem was not my hips but my spine. He arranged X-Rays which showed a lower back problem. This was followed by an MRI scan which confirmed damage to the disc's at the lower lumber region.
Without any explanation I was referred to the acute pain relief clinic which operated at the same hospital under the NHS, I waited about 6 months to see the head of the clinic, and was advised I would have an X-Ray guided pain killing injection directly into the effected nerves adjacent to the effected disc's. The pain relief lasted 4 days. In the follow up consultation the Dr asked if it had worked, and if so, for how long, upon telling him he said this was considered a complete failure. We went on to discuss available options and he said the chronic pain clinic was not an option, if we could get an NHS spinal consultant to agree I needed a spinal procedure, I may have to wait a minimum of 12 to 18 months. I asked if he could refer me to a top spinal specialist who would see me privately, he replied he would arrange it.
All in the space of 6 weeks from that date, I have had three consultations X-Rays MRI scans, and root nerve injections and told as I have bodily function problems it is likely I may have nerve damage. I can have surgery in 3 weeks, at a cost of £9,000. Bob I'm so desperate, as I'm in so much pain, and been advised by my MP and Welsh Assembly member they cannot help.
I'd focus on getting the right treatment now, as teadrinker says, private surgeons have different criteria for operating. In my experience, I have nerve damage, symptoms of which are variable. It's part of the disease process. As much as I'd like, I'd like to sue but I can't prove anything concrete.
You do have choices. I think getting more info as TD says, asking direct questions, will give you more to work with. Have a session with a sports physio, they really know what they are talking about with pain. Most know exactly whats wrong just by looking at you walk and stand. Sometimes an independent review is better.
If considering spinal surgery, please ask about the failures. It's such a delicate area and so much can go wrong, you do need to know what to expect if it unfortunately goes wrong for you. Then the question is are you prepared to do something that may make you worse, and how are you going to cope with that? I can't answer that question for me, so until I can, surgery is not even on the radar.
I've had mine 11 yrs, got it stabalised by a chiro, then treated when it flares by a sports physio. Inbetween times, I. Do the rounds of alt therapists. It gives me aches and pains, sleepless nights, inability to race through life, but I've worked hard at building a life I am comfortable in, and now my children are young adults, I can relax a bit more. I never wanted them to see me giving in to it (or appear to be giving in).
Given the symptoms at the time I think you were fairly treated. There may be a case for not investigating further, but if you didn't fit the criteria for such investigations, then you wouldn't get them. Many correct treatments don't work either. Pain killers just take the edge off the pain, or send you loopy. Damaged nerve pain is very hard to treat by medicine or surgery. Even if the disc was removed the nerve may remain damaged and will still fire pain messages. Happened to someone I know. Had surgery on a disc, a second disc was compressing a nerve but this got missed. Second op to sort out that disc. Nerve remained damaged. Worse off than bgefore surgery.
Thanks for your your helpful comments, which are all taken on board, however having had this problem for 5 years, and seeking and obtaining various alternative treatments inc chiro, sports physio e t c which all provided temporary relief about 2 years ago, but no longer seem to work.
I think you may be correct, in some of your remarks, as we all think we are the only one's that have suffered such pain. However I may also be influenced by the fact that I've had this surgery in 1973 and was walking about within 3-4 days, and playing Rugby and Squash within 6 months. So I'm hoping for the same result ( I'm not sure about the Rugby and Squash though )
Many thanks for your kindness
Their seems to have been a problem with the original diagnosis, when you asked to be seen in Private Practice this may have caused the NHS to consider you now being a Private Patient, you were then referred back into the NHS clinic. By doing this you have discharged yourself from the Private Practice. Under those conditions you have begun at the bottom of the list once more, this is an initial suggestion of what has called the problems of been seem
Six month waiting times are generally the initial periods for first see appointments, the treatments in Hydrotherapy etc I understand must have been with NHS ?? , at this time they would most probably be seeing how you were getting on,
When you were becoming upset with the staff, then on your insistence you were reviewed by a further Consultant who then repeated tests and gave a diagnosis of Lumber disks, here it seems you were seen in an NHS Hospital as a Private Patient .
Now again you had further tests to confirm the problems with the Lumber Spine, now you are again considering private practice for lower spinal surgery.
Now I understand the problems you have is several joints and disks now need treatment, an operation, your condition is causing problems with the Bladder and other internal organs. These problems are caused by nerve damage in the lower lumber region.
The main problem here is the changing between NHS and Private Practice. The paperwork will be tied up between the two different systems. Now we find you in a very complicated situation.
All I now can suggest is you should have all the paperwork of the treatment you have had, you also should ask for copies of Consultant letters to your GP. although now we are were we are and try and get around the problems you see yourself in
When dealing with the NHS and Private Practice as mentioned earlier when you refer out of NHS they take that as what it seems, this can leave the patient in the situation you now find yourself in. I went for Private Consultations when I was after a diagnosis in the early days of my condition I was fortunate the NHS GP after treatments and diagnosis was brought back into the fold of NHS, after I proved my point. although it still cost a substantial amount of money
One thing you could try now is to go back to your GP, explain what has gone on if He does not know already. Tell Him the problems you are having with spine and internal organs, also explain you are worried about your body functions. Now you want to sort out these problems. You and He knows that those problems are associated with the spine, try and get the spine operated on that way around. now under some urgency as the problems missed over this extended period are effecting your life. This is all I can suggest, The actual treatments you have had, over the extended period are generally good calls. if not over an extended period of time caused by crossing over NHS, PRIVATE regimes
If you are still having problems with getting the operation you may have to pay for the operation as said at the end of your script although I feel that to leave you the way you are is not a good place too be, May I give you one thought, it would seem the Operation may have been over now if you had stayed with NHS
This site is generally to give support on chronic Pain sufferers, and we give advice on peoples conditions, we are not medically trained, we can only listen and suggest.
The condition you find yourself in is not unusual as such, Personally all I can suggest is if you start with the NHS think well that you may be extending treatments if the private way becomes problematic Both systems have problems mixing .
. Sorry I am not much help here, if you need to come back regards this feel free
You could make a complaint to the Hospital Trust and get some answers (one would hope!). Its not a legal process but we are all entitled to question our care.
I was talking socially with some Charge Nurses (Matrons) yesterday who said the NHS wastes far too much time covering their backs. I know from personal experience and a friend in the business the NHS will hire a so called independent Dr to write a report on you. There is a strong possibility you will not recognise yourself in it. Being lied about is frustrating and distressing. Likewise your lawyers will have to commission your own report which you may not agree with but cannot change. I have been through this on a PI case and it is constant stress and distress for in my case 5 years. And then there is can you afford it? You could spend the money on nice things that would make you feel better. It is also important you don't jeopardise your own recover. Stress is very bad for pain, it makes it worse. Im so sorry you have been through this.