Calling Lumbar Disc Sufferers...i need to ask some questions...

[PavlovtheCat]

Its me. again. if you are reading this you have probably read some of my umpteen posts about poor old me and my back. feeling very sorry for myself, and yet know so many of you have it worse than this.

Anyway. My back has 'gone' again. However, this time, as well as lower back pain, I have also had a pain in my neck/spine which has eminated into my head, across my right shoulder, and the nerve pain has followed it there into my arm and fingers. It reminds me of when you pull a muscle or something sleeping funny. And then as i have been thinking of this, I remember that I have had this a few times, but not ever connected it, just put it down to sleeping badly. I get a 'clicky' neck a lot too.

So, never gave it much thought, but as my back has been painful so has my neck/shoulder, and the pain in my arm and into my fingers has been at times almost as bad as the right leg sciatic pain, and it certainly feels the same type of pain.

so, given that my MRI has spotted 'several' disc bulges, could this be something that could be a problem higher up too? does that ever happen? could they be linked, or a seperate hypochondriac type problem? The MRI did not go that far, only did lumbar region.

The pain in my neck has subsided now, likely due to all the powerful drugs I have been taking, but the sciatic type pain comes and goes down my arm into my hand/figners intermittently, although nowhere near as bad now as my current sciatic pain.

so thats my first question. is neck related to lumbar pain? or, can it be? (i think I am worried it might be degenerative? this can affect all discs can't it?)

next is:

is there any complimentary treatment or therapy, or food/supplements etc I can take to support helping my discs go back to where they should be/get stronger/stop my back going again. I don't want this to keep happening, as it is affecting my life so badly now. I can't work at the moment, I can't clean the house, pick up my children (esp my 2.5year old), lie down with them. I can just about drive the car. I can't walk far without it hurting, stand up for long without it hurting, but surprisingly I can sit down for a while. I of course will continue with the usual route but nothing seems to be being done for my back that will help - injections not worked, acupuncture not worked, MRI shows no nerve entrapment (think the results might be a little different right now) so nothing surgically feasible. What else have I missed? other than drugging myself up on codiene and diclofenac?

Anything that can help, i am willing to try.

great minds

tough that really does sound tough. when did you have the op? The MRi is to be reviewed formally next week with me, however the osteo's boss has looked at it already and informed me no nerve entrapment, which clearly my body is telling differently. The reason he called me was actually because something else came up in the scan! (I have a horseshoe kidney, which might or might not be a problem, but currently appears not, and he is clear the back pain is not linked with the kidney).

When I was post-op, the hospital prescribed two paracetomol, two codeine and two valium as the optimum pain cocktail. You need the valium to get the muscles out of spasm as they get into a horrible cycle of pain causing spasm causing pain causing spasm.

Have you got a TENS machine too? I'm not sure if that would work. Maybe you also need another MRI of your higher back? I think they're a few hundred quid privately, though it's been a few years since I had one.

tough I am going to go through with a fine tooth comb and may well ask for another one. I agree that sciatic pain is trapped nerve pain. I guess what they are looking for is permanent entrapment which is causing nerve damage. their (osteo) attitude seems to be, if no nerve damage, not much can be done surgically.

tough i get pins and needs in both my right and left foot, mostly my right, and in either only from time to time, and some in my right calf. Funnily enough I also get it in my right hand!

re numbness. none in my leg, but I have had altered sensation around my backside region. Not enough to not feel, but it is numb, just not completely numb. at christmas it felt quite numb indeed but because I had control of my bladder and bowels they did not seem concerned. I should, in hindsight, have gone to A&E at that time, but I did not realise I would probably have got an MRI right at the time the nerves were being trapped badly.

If that happens again, I have told DH, I am going straight there, end of story.

tough you are right. I am off to gp tomorrow to have a chat about referral to pain clinic. i will go and talk with osteo and get their opinion fully on thursday while waiting for my gp to procrastinate a bit about referring me onwards again

tough the osteo just sort of scratches his head. He is very sympathetic, but they are just perplexed that acupuncture and steroid injection does not cut it. I just have no faith that whenever I see my gp, or my osteo I am going to com out with any better idea there is something actually wrong/or that can be fixed.

tough have not actually got a consultant for anything as yet. I have a mutant kidney, a screwed back and yet there is no rush for anyone to do anything at all.

I am realistically going to have to go to work on monday. As much as I can't really face the slog around the office in pain, having to see my clients and answer questions (which generally goes along the lines of 'i hurt my back, now butt out...!' being asked lots of questions, having to get up a million times, and attempting this without pain relief meds as I can't manage on even a low dose of co-codemol without totally spinning out when people try to ask me a serious question. I sort of look at them like 'uh?' for a moment or two or more. I sort of think maybe another week off to test the waters re no pain meds, but then as I am walking and can sit ok (getting up it the problem) I feel a bit of a fraud for not going in. Lots of people work when in pain so no reason why I should get out of it. I might try no pain meds tomorrow and see how that goes.

tough what consultant would I need to book with? there seems to be so many that deal with backs, would it be a neurosurgeon? or is there another type of back specialist?

oh and to add to my list of woes, I have throbbing in my calf now. I can't recall who told me, another mumsnetter on another one of my moaning threads, that this is a symptom, reminiscent of DVT symptoms and she had to have them checked out. I had this before a couple of months ago and it passed, it has returned. I know it's related to back, but, I should probably mention that to GP to

Pavlov, I have degenrative disc disease and bulging dics in lumbar region and cervical (neck) region. Pilates has halped a lot. Really can't emphasise how good it is. If you can go to a few classes to find out the basics and then get a pilates back dvd, there is a special back/pilates one. I went to classes run specifically for back pain rather than normal pilates as well.

Ask for a referral to a pain clinic. I'm a lot better since they put me on all sorts of weird and wonderful meds - gabypentin, amyltriptelene, etc.

viva I have been doing pilates actually, and body balance, both of which I enjoy, body balance in particular I love. I think it helps with the inner me as well as the physical me. I find it difficult to go due to DH working shifts that often coincide with the times of the classes. Over the last 5 weeks I have not been at all (went once I think) as we had chicken pox one after the other and that wiped me out sleep wise caring for the children, who were up in the night a lot, plus DHs work, then DD broke her arm and it has been chaos and now this week I can't go as I am in too much pain. Both instructors are aware of my back problems and give me warning of those which I should avoid, at the beginning of the class we have a discussion if the routine has changed about major parts that focus on the back and as the class goes on the instuctors give a reminder/prompt as we go into the exercise to either go to level 1 or avoid (usually go into dog or child pose in that instance).

I have found it helps lots. And I vaguely wonder if not being able to go has affected the strength of my back, even in those few weeks. Maybe I need to do those exercises every week/several times a week without fail.

oh that is really helpful to know about the pathway, i did not know there was one. i will absolutely find the time to go and read it! seeing gp today. will see what he says be prepared to bang my head against the wall again

tough i just read through the pathway for our pct. WTAF? I have no idea why I have been referred to a bloody osteopath. no wonder I am getting no treatment. I mean its excellent that I have had an MRI. But, i really need to be having a hospital consultant look through this with me, not an osteopath! From what I can see on the NHS direct info, osteopath treatment is classed as 'complimentary medicine'. 6 MONTHS of pain. and I am not even in the right place.

got the results of MRI from gp, he had them faxed across from osteo. it seems all the lumbar discs are protruding, and are dehydrated. L5/S1 has a tear and broad based central protrusion. the other discs have uneven endplates and schmorl nodes.

gp says it is not fixable, short term 'find a way to avoid the things that will risk causing a further protrusion (i said, like, my 2yo old DS?!) and maybe long term to remove the discs. He almost, but not quite apologised as he did not think this would be the outcome. I think he just thought I was being a drama queen, and shovelled me off to an osteo to get some woowaa done and now he feels a bit silly as there is clearly something wrong not just me having a 'back twinge'. He is also aware that the MRI states no nerve impingement but that currently, this is not true as there is. He thinks this will ease off as it is due to the disc agrevating it after being pushed out, and that it will go back in, just taking time as dehydrated.

I asked him if therefore I can expect this to repeat itself and he said he does not know, but when I pushed him conceded that it is likely. great.

I asked where now. He said 'good question' he asked what osteo has done so far, I said MRI referral, acupuncture, steroid injection, and so he said to go back to next appt and see if he can do some more physical manipulation or something to help ease the pain. No referral to anyone at the hospital or elsewhere.

I got some nerve pain medicine, not amytripiline, something else, cant recall as not in front of me, begins with G. He indicates this needs to be taken long term and has given me a bundle of repeat medicine so I don't run out of anything. Thats reassuring. Not. This med will take a few days to build up so wont help straight away.

And no more about moving on to look at why there is so much pain NOW as obviously things have upped a level since the scan.

And I now know why. I called him back as it bothered me. Since I spoke to him at 10am, he is on holiday for two weeks. Could not be bloody bothered with the referral.

I told him about pain in arms, and he did not really say much about this other than lots of discs are affected so likely displaced pain.

Does anyone know what areas are scanned in Lumbar MRI? I know not the Thoracic/cerival region, but is the Sacral region scanned? I worry now that if this is the problem with all the lumbar discs, then could it be affecting other areas. I am certain that some of the pain problem is much lower down in my sacral area.