Popeye,

you need to get to a neurosurgeon, and pronto. The doc's who are saying you aren't ready for surgery maybe putting you more at risk for permanent nerve damage. With your family history I would be doubly concerned as you may have a genetic condition that causes your back to deteriorate. Please go get a second opinion.

Thanks for your quick reply have seen a neurologist and a neuro phsyoligist but they didnt have any ideas, the best advice I could get was try a chiropractor but dont waste to much money. They did an emg and nerve conduction studies but said that all it showed was there was no permenant nerve damage at the moment. Had a 3rd mri yesterday which supposed to be with contrast dye, but at the hospital they said after the normal mri they werent going to do it with dye, and it was a clinical decision by the radio ologist (what ever that means!?) and refused to tell me what if anything the scan had achieved, so have now got to wait until my dr can fit me to let me know.

Hi popeye. I am sorry to hear of your problem as I can identify only too well with this. In the uk, consultants will delay patient investigations for years to save money.


Like you I have had the same situation in trying to get further tests done -i had some mri which are showing a "mild" prolapse at l5/s1, I am told this is not particularly diagnostic for my symptoms of back pain, numbness in the legs sometimes and muscle spasms.

I have also seen a neurologist and a neurophysiologist, had emg, bone scan, lumbar puncture and countless other tests, there is evidence of minor neurological deficit yet I am being told "you have not reached the threshold at which the pain clinic can do anything for you". What threshold are we expected to reach?


Already I am living on morphine tablets and liquid, this has been going on for three years now and I am getting worse and worse with the neuro problems, muscle stiffness, bladder problems, pain in low back dropping into left buttock etc.

I was mistakenly diagnosed with multiple sclerosis, upon my own independent uptake of a second opinion, this diagnosis was rescinded. I have reached a stage where I have no confidence or belief in most doctors I meet. There is one doctor who is fully engaged into helping me and has tried numerous things, botox, epidurals etc, he is the only doctor whom has not given up on me and is still trying to elucidate matters to final conclusive diagnosis. My next step is also a neurosurgeon whom is experienced in pain management.

What I can advise is that I have achieved very powerful results when I have invoked my mp's support when the hospital get sticky about doing further tests and putting me on long waiting lists. I have been quoted mri waiting times of 18 months and my mp got me them within six weeks. 18 months for a diagnostic test is simply not acceptable.

I agree that you must insist upon a referral to a neurosurgeon - realistically the decision of whether or not surgery is a necessary intervention lies in the hands of the person whom has experience of carrying out this surgery. Do not be fobbed off - if you become increasingly disabled now, it's too late after that!

I would imagine at some stage depending on the outcome of the neurosurgical appointment that you should potentially consider seeing a solicitor regarding clinical negligence, it sounds like you are in an extremely similar position to me overall but mismanagement of chronic pain is unacceptable. Allowing neurological deficit to worsen if it is cause by orthopaedic correctable problem is negligent medical practice.

Popeye - basically we're pretty much in the same place here albeit minor differences in symptoms, if you wanna chat then drop me an email, regards annemarie

Wow!!! I think I would be finding a 2nd or 3rd opinion. Technology has come soooo far since this happened to your father. You need to get this taken care of before its too late. Im really sorry for the pain that you are in. :cry:

Pain,

these poor fellas are across the pond in the uk, so health care there is government funded, so you kinda get what you get. It is my understanding that they don't have the same options we have here.

Ive supposedly been lucky, all my medical costs are being picked up by my company so can get it all done privatly which cuts down on waiting times no end, one of the perks for working for a big american company I suppose they try to look after you medically as much as they can. But even though they have spend around £4500 in the last 12 months on nerve blocks, scans, and op to free latteral cutenous nerve, and various other things still no further on than when I started, have now been off work for the past 6 months with no sign of returning at the moment, so getting fed up, and have now been diagnosed with depression!!
Have started taking fentanyl patches (50microgram per hour), does anybody have any experience with these?? Was a big step to go over to them, I was trying to avoid strong painkillers, but got to the stage now where I dont really care.

Thanks for all your replys it has given me heart knowing im not the only one suffering with these problems, and it means alot that you could take some time out from your own problems to drop me a line.

Hi I used these, then found I was getting breakthrough pain, there are other patches called transtec, I lost a lot of weight on fentanyl, at worst point 1 stone in 4 weeks, had nausea, loss of appetite, profuse sweating and drowsiness. I was on a high strength so give it a go, see how u get on. I wouldn't even take an aspirin before this! You just reach the point where you don't care and need pain relief.