Depressed and getting nowhere at all

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amisharma

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Hi Niad,
I am from Canada & I know the medical system here is quite similar to that in UK. That is, we have a health tax system, so we do not have to pay for visits to doctors, medical tests, MRIs etc. I think this system really sucks & I agree that it is a "conveyer belt".

I had been having back problems for the past 7 yrs & have changed a couple of GPs in that time frame. I was also recommended Physiotherapy & sent to Reumatologists, Neurologists ets. but never to an ortho or Spine specialist. None of these specialists sent me for an MRI even though I kept suggesting it to them. They treated me for Fibromylgia, put me on anti-depression pills, sleeping pills & followed the trial & error route untill last year when I put my foot down & strictly asked for an MRI. When I called the GPs office to inquire about my MRI results, I was told by the receptionist that it was normal. I did not ask to see the report thereafter.

In the meantime, I had to visit India last Dec. & took an opinion of a Spine Specialist there, as I was in extreme pain there. Within 6 hrs. he had the X-rays, blood tests, & MRI reports at his desk. The diagonisis was "Acute PID L5/Si compressing the cord with mild PID at L4/L5". As in your case, the L4/L5 disc were drained of fluid & had turned black & were compressing on nerves around the area causing sciatica pain.
I knew if I came back to Canada with these reults, I would be put once again on a merry go round for another couple of years.. I was so frustrated & in pain that I decided to get a surgery done there itself...Upon my return, I asked my GP why my MRI here didn't show the same results & guess what he checked the report & said that it does show disc herniation at L4/L5 but that's quite common in most people. No GP would send you to a Spine specialist for that reason, meaning that the spine surgeon would see me only when I am almost paralysed & unable to move.. Untill then they will let my condition deteriorate & keep sending me for conservative treatments.

The hospital had patients from UK & USA & they all had the same complaint. Patients from US were there due to the cost factor but the ones from UK & Canada(like myself) get treatment there due to the amount of time that is wasted, making the patient's condition worse..Now I am back in Canada & need a follow up MRI to make sure the recovery is good... i have an appt. for Sep.3rd... I am lucky I didn't have to wait for 3 months, this time.. :-)
I hope you can find a good Spine Specialist as your problem sounRAB very similar to mine.. I will try to find out from my doc what Grade 3 means.
 
Thanks for your help and sharing your experience, amisharma. :)

I feel for you as we all seem to have trouble getting to see spine specialists that actually take notice and want to treat us.

The merry go round is also a problem as I also had this happen to me. I did physiotherapy in 2005 and then decided enough was enough and wanted to see a spine specialist so went to my G.P and got told at first it was 'just muscualr' or 'you'll grow out of it - it's just growing pains' then after a couple of years I decided to go back to my G.P as I knew from the beginning that it wasn't any of those things and in Noveraber 2007 he ordered an x-ray of my spine which showed disc degeneration of an unsual sort for a 19 year old (at the time I was 19). He then sent me back home for four months to do more exercise like swimming, walking, etc which made me worse so I came back and he sent a referral letter to the hospital for me to see a spine specialist.

The thing in the UK which makes it hard to get to see a spine surgeon is that although my G.P referred me to a spine specialist, the system automatically referred me to a physiotherapist (two different ones) twice! I found the one much better and sympathetic to me than the other one and he ordered an MRI too. I think a lot of this is the luck of the draw in whether we get a good person who has time for us, genuinely cares for their patients and has good knowledge of procedures. I have seen quite a few who would have just had me on physiotherapy only for ages but nothing else.

My MRI report probably does say the very similar things as yours but at my L2/L3 region of my spine. I only had one person read it out to me but the other physiotherapist didn't so I think they try and ignore common problems like disc protrusions, etc as in the UK it's a money thing. The NHS doesn't have enough funding and resources to do its job because our government doesn't give them enough, resulting in patients left to suffer needlessly. I think the state of some healthcare systems is terrible.

The thing that I am not sure about is that my MRI apparently doesn't show my nerve is compressed but one of my physiotherapists said that I could still have an epidural. I'm just wondering if you or anyone on this forum could give me a little advice on whether this woud be effective for a nerve that isn't compressed but for some reason still causes pain.

Thanks for the kind offer of asking your doctor what Grade 3 means as it's really doing my head in trying to think about what it means.

I'd also like to ask what type of treatment you had in India as I've heard it's good there for this type of thing.
 
Hello, everyone.

I'd just like to ask for some advice. I have seen another physio (yep the hospital keeps sending me to physios and not a consultant) and have been told that they can't do anything for me and I haven't even been sent to see a consultant. I've had an MRI which the physio had in front of them which shows a 'black' disc - degenerated and no fluid in it (apparently). They couldn't even answer my questions and just kept saying there was nothing that could be done. I am still not being referred to a consultant as the consultant didn't want to see me. I'm extremely dissapointed and not happy with any of this useless advice I've been given. All the physio said was that it's tough luck I've got this problem and that I've got to live with it. That in my books is very unconstructive advice and I would like to have a little advice on what to do next. Thanks in advance to you all. :)
 
Hi niad, Welcome to the boarRAB
i am in the UK and have had the same thing happen to me i am in my 26th year of back problems and have had 2 surgeries. You need to go back to your GP and ask for a second opinion i too have dics that are deteriorating but had a laminectomy for a trapped nerve. You have a right to a different consultant and after all this time i will at some point this year be seeing a spinal specialist in Hull who deals only with backs so dont give up. There are lots of things you can try injections in the spine accupuncture and lots more. We are there for you and some of these people on the boarRAB really know a thing or two about pain and backs. They are great.


Tracy
 
Thanks for your great help and advice, shady123, jacquelineforde, Wymom94 and sherry1. I am really glad that I joined this forum as I'd be lost without it and all of you. :)

I thank you all for your excellent help and advice. I don't know what I'd do without you all and this forum. :)

I feel that you are all more helpful and informative here than when I go and see these so-called medical professionals. All they say is they can't do anything. I feel they are wasting my time as I have better things to do than be told by them that they can't do anything. Sometimes I honestly don't know why I bother with these so-called health professionals as they are absolutely of no help or use to me whatsoever.

The strange thing is is that my Dr sent a letter which did say that conservative measures had failed and I needed to try something more now. I had done physiotherapy before but found absolutely no relief, in fact it made me worse and now they (hospital) have prescribed me physiotherapy again! My Dr did refer me to a consultant spine surgeon. It's the hospital's fault - apparently the consultant spine surgeon didn't think it was worth seeing me and re-prescribed me physiotherapy which from my referal letter says didn't work before which in my books is a bit strange for a surgeon to do again when it was known that it didn't work in the first place? I just don't know what to say, really. This surgeon doesn't sound very experienced or caring to me so I have decided to go private and see one as the NHS is rubbish and is saving money all the time by not helping patients. In the end it pays to pay as at least I'd get to see a surgeon face to face who will probably help me and be more sympathetic to my cause.

The thing that upsets me most is that because these people who are supposedly supposed to be treating me are not caring and don't know or understand and they never will until it happens to them what it's like to be told to 'live with it' and 'it's nothing' when clearly the MRI scan shows there is something wrong with me. It really is awful to have an NHS that doesn't treat its patients the way it should be treating them - with care and respect.

The other thing that frustrates me is that when I told the physiotherapist that my life was affected by this a lot she just shrugged it off and told me to carry on! How can I carry on when I'm in so much pain?

I have seen only physiotherapists (3 of them so far) and never even been to see a consultant and I'm still not happy as all the two said was that 'oh, it's just muscular!' even though clearly the MRI which was in front of her eyes said that there was a crurabling damaged disc that was black and had no fluid in it and other things that because she scrolled so fast through the MRI and x-ray results I couldn't even read what the radiologist had said on the bottom! I know it said things like annular tear and Schmorl's node, etc and she didn't even mention any of this! It's as if they are just brushing it off because of money!

The other thing that certainly concerns me is my back makes a clicking sound when I move, bend, etc. I don't think that if it was 'only muscular' it would click! Muscles don't click! It sounRAB to me like my disc that is damaged is the thing that is clicking because it is grating together on the other bones/discs.

Another weird thing was is that when I asked the one physiotherapist if there is anything like epidurals or other alternative treatments apart from physiotherapy (which I know has failed on me and has probably made it worse) she said that there was nothing else and that an epidural wouldn't be any good! My other physiotherapist which I did find more open and helpful said that there was epidurals, TENS machine, etc I could have which would help.

Unfortunately I don't entirely know what my MRI says completely as she didn't explain it - she just flicked through it so fast as if maybe hiding something? Something, I feel has gone amiss and I am scared and don't want any treatment until I know that it's the right correct form of treatment for this condition that I've got as I can't and don't want to risk making it worse than it already is - unfortunately I haven't even got a name for it! They didn't tell me what condition I had at all which is also concerning. I've actually asked for copies of the results report for the MRI and x-ray as I would like to know myself what the radiologist has found and when (if they'll give them to me) I get them I'll let you know what it says.

I would be grateful if anyone could recommend a spine hospital dedicated to spines as I'm thinking of going to another hospital in the UK and also let me know of any good spine surgeons that may be able to help me as I don't know who is the best or has had good outcomes in the UK. It's very difficult at the moment as I don't know how to choose the best one or where the best hospital is.
 
I am also UK based for my back treatment, and just wanted to add the same worRAB of being persistent. It seems to me from these threaRAB that our US counterparts seem to really do their homework and/or have things slightly more organised. I am currently going through a similar situation as you Niad in getting silly pessimistic comments from those in charge of helping us, but this forum has been my main source of information. I go in armed with this, and it helps push people in the directions I would have expected them to come up with. Not ideal but it makes me feel like I have some power.
Good luck, I do know how you feel to hear such comments.
 
Here is what my MRI report says as I managed to get a copy.

MRI of spine (lower): There is disc degeneration at L2/L3 level with a Schmorl's node and annular bulging. The degeneration would appear to be Grade 3. The remaining discs appear normal. There is no evidence of facet osteoarthritis. The sacroiliac joints are normal. There is no evidence of nerve root compression and all foramina are normal. The conus is normal.

MRI of pelvis: There is no evidence of an abnormality in the sacroiliac joints or in the pelvis. Both hips appear normal and the sciatic nerves are both normal. There is no abnormality in either ischial tuberosity.

I'm not sure what foramina, conus and ischial tuberosity is or means.
 
Niad
I feel for you as I have also experienced the exact same feelings as you over the NHS. However, I feel I should tell you my story before you go private. My GP was not very helpful for about 8 years saying I just had weak muscles in my back so go swimming. Last year I got tough on him and demanded an Xray. Then based on the results (yes,you can demand they quote the report to you word for word and can legally ask for a copy on the x ray by paying a minimal fee, aorund 10 pounRAB) I demanded a referral to a spine specialist. He ended up giving me a private referral which actually means the GP writes a letter but you go as a private patient. A complete scam and his way of getting back at a "difficult patient" as I had obvioulsy now become. Anyway I paid the private spine specialist about 200 pounRAB for a consultation. He looked at the x rays, did a physical and suggested the MRI route at around 500pounRAB. I told him I couldn't afford to continue with hiim privately and so he wrote a letter to the GP suggesting he treat me as his NHS patient. The GP eventually agreed and so I am in the weird position of having paid this guy as a private patient and then been transferred to him as his NHS patient. Lots of UK docs operate in both systems. The thing you have to be careful or lucky with is whether you get a good specialist or not. I have to say this guy had a lot of time for me when paying and has treated me pretty badly so far as his NHS patient. The usual crap of conveyer belt style, and when I dared to ask more than more question he snapped back that I would probably be in pain for the rest of my life and I should just take a look at how many people are claiming disability benefit in the UK. A stupid, unhelpful, pointless statement at this very early stage in my treatment.
I have to be careful being demanding as I am based abroad and in a tricky position, but I suggest you go through your GP to ask for spine specialist referral, and then the minute you don't think the person you are seeing is positive or helpful, demand a second opinion and/change of specialist. As patients we seriously have to start seeing our NHS healthcare as a service for which we are paying customers, and as such demand a good service.
Hope that didn't seem too much like a rant!
Jackie
 
I would be grateful if anyone could give me a little advice on whether an epidural or local anaesthetic injection would be effective or suitable even though my MRI shows that my nerves are not trapped/compressed. Thanks in advance to all of you. :)
 
Hi Niad, i dont know what to tell you,as far as the injections go,my reumatologist sent me for the esi,what does your dr suggest?iam really sorry if your not getting the proper care.my epidurals were for my neck,which produced pain in my upper back and then in my spine for leg pains its worth a try,i got alot of relief for the leg area,if you do decide to get one the best advice i could give is to ice the area and take it easy for at least a day.i went right back to work and think thats why i had problems.iam sorry for the way your being treated,back pain is very misunderstood,best of luck.marywoo
 
Hi Niad, What else does your MRI say? I had/have a fully dessicated lurabar disc, too, lost all the spinal fluid. When I had my surgery in May, nothing was done for that, though. My surgery addressed where my cord was flattened and clamped down on the sciatic nerves down both legs and my bone spurs. I still have the 'empty-black' disc, some bulging discs and other areas with mild to moderate stenosis, but (big 'but') my problems and pain stemmed from the stenosis and not my other, "lesser" issues That's not always true for everyone. I can't imagine that you'd have a fully dessicated disc and no other problems and I'm so sorry you've been treated so dismissively. If the docs had the problems, I doubt they'd be so dismissive. Can you call to find out why the one consultant didn't want to see you? Maybe if a report of your symptoms were sent along with your MRI report that would get their attention or at least get them to contact YOU before deciding they wouldn't see you. MRI results do not always correlate with symptoms and what they may see and "pass off" as 'livable', they may realize is NOT when they hear what level of pain you are in &/or what changes have been made to your quality of life. It may not be in your nature to pester or keep at them, but do it anyway. The squeaky wheel gets the grease. You deserve to have whatever relief is possible for you.
Take care,
Meghan
 
Thanks for your help and sharing of your experience, jacquelineforde. :)

I have been told that it is 'just muscular' by my G.P and a physiotherapist but on my MRI scan it shows a 'black' disc between L2/L3 which is apparently prolapsed and has lost fluid which is why it shows up black on the MRI. I couldn't read much of the whole sentence on my MRI results report as the physiotherapist that said it was 'just muscular' didn't let me read it. I saw it say Grade 3 and I am not sure what that means. I'd be grateful if you or anyone else could tell me what this means and what treatments would be more appropriate for Grade 3.

The other strange thing I noticed was that they are making me do physiotherapy even though it didn't work before! I don't see their logic in giving me a treatment that didn't work before.

I still can't get over the fact that the consultant who my G.P referred me to didn't want to see me. He just passed me onto someone else (physiotherapist) who didn't know how to explain the x-rays and MRIs and couldn't answer my questions properly.

I can't work because the pain gets too much and I'm scared in case I make it worse. What surprised me is that the physiotherapist who told me it was 'just muscular' said there is 'nothing wrong with your back' and told me to be normal i.e. work, ride a bike, etc even though the x-ray and MRI showed there was clearly a problem!

On the MRI my nerve isn't trapped but is still causing me to get weird sensations, including tingling, hot/cold and nurabness and I have heard that the fluid that leaks from discs can cause a chemical reaction and lead to them going inflamed. What I did notice as it kept me awake all night was nurabness after the physiotherapist messed around with my back. I'm not sure whether physiotherapy is a good idea for me as it seems that everytime I do anything physical like driving a car (I was learning to drive but have stopped out of being too scared because of foot nurabness afterwarRAB) or even being physically assessed I get a temporary nurab feeling down my leg and foot for at least a day which goes with rest. I'd be extremely grateful if you or anyone else could give me a little bit of advice on this and what to do.

Do you or others think I'd be better off seeing a Neurosurgeon or an Orthopaedic surgeon as I'm not sure on which to see or whether I should see one of each? I was referred to (but didn't get to see as he didn't care) an orthopaedic surgeon.

I'm going to see my G.P and ask for a referral to see a spine specialist at a different hospital as the spine specialist I was referred to seems not to care about his patients as he didn't see me and that is the immediate impression I got from him.

Does anyone know of any good spine specialists in the UK?

Thanks in advance to everyone on this fantastic forum. :D
 
Hi Niad

I am in the UK too and i have had 3 years of back problems.

Luckily i have a really good doctor and when physio didnt work for me she immediately referred me to a consultant.

Ever thought of changing your doc if you are not happy?

You do need to keep pushing for something to be done.

Dont give up!

Best of luck.
 
Sorry to double post but I would certainly be grateful if anyone could give me an idea of what Grade 3 means as my MRI siad this on it, not sure what it may have been referring to though.
 
Thanks for your help and advice, Marywoo. :)

My doctor (G.P) has gone with what the physiotherapist said and is following his instructions. The physiotherapist (the one which I found more helpful than the other one) recommended (without a conslutant's input as I haven't even seen one yet) an epidural even though on the MRI my nerve is shown not to be trapped or compressed.

I had gone back to my doctor (G.P) and told him about the fact the hospital system hadn't let me see a consultant and he is now writing a letter to the hospital for me to see one as he said physiotherapists shouldn't make any decisions before or instead of a consultant.

The thing I am not keen on is the fact of having steroiRAB which I've heard damage my bones and at my young age I don't think steroiRAB are appropriate. Do you know if there is other types of injections that are non-steroid?
 
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