"Problems getting treatment for damaged s1 nerve"

About: Victoria Infirmary / Trauma & orthopaedics

(as the patient),

After complaining of pains in back, leg, bum & foot, I have seen back specialists and physio. Even after not being able to walk very far or stand up straight for long, I was given amytriptylene, (after 2 yrs of complaining) which took the edge of the pain.

Eventually, I was then not able to walk or stand up at all. I was even sent for a scan which showed herniated disc compressing the s1 nerve.

After telling my GP that I didn't feel much benefit from amytriptylene, I was taken off and put on gabepentin, and sent via referral to see a surgeon. (this was 2 years ago)

I left the surgeon's room in tears. I was basically told (even though scan showed herniated disc) there was nothing wrong with me, it was all in my head. The surgeon said they had back pain and doesn't take anything. This surgeon also told me a (seemingly pointless) story of how these scans were rubbish & created problems that weren't there.

I was told to stop my medication & go home & deal with it. This surgeon said did I think I was going to come in here, they'd wave a magic wand and say I was going get an operation? I said I thought I was coming to hear some advice, or solution. I said how I'd tried twice to come off the medication and I was near enough crippled. I had a 2 yr old son and I couldn't afford to get like that again.

The surgeon asked when I came off the meds. I said last summer and I was housebound all summer till my medication kicked in again. Again, I was told it's in my head, and that was a year ago, and there is nothing wrong with me now. I was shocked and left in tears. On my way out, the surgeon pulled a sheet of paper out of a folder and gave me this piece of paper.

I got home and I was so angry. Basically it was everything the surgeon had just said to me (I still have it). Clearly this surgeon has typed out this rude speech to hand to back patients as though every one should be treated the same! It was typed out and waiting to give to me, before I'd entered the room or been seen.

I didn't go near a doctor for a long time to complain about anything unless in real pain, as thought what's the point. I was so depressed. I kept taking my gabapentin until recently I've had to see my GPas it all of a sudden wasn't working so well. I get spasms in my leg that wake me up in pain. I have constant back pain that I do just deal with, but this was getting unbearable. 

Talking to my GP, as I was talking 3 a day, I asked if I could get another 1 for through the night. My GP said I was only allowed to take them 3 times a day, so instead I was to take double the amount of tablets 3 times a day. So instead of 3 tablets, I now take 6? Surely just 4 is better than 6, but I think I best just take them. All of a sudden I feel very not well. I have no energy, some days absolutely floored, no appetite & tingling in my face along with nerve pains in my arms, legs, night sweats, trouble sleeping at night, but sheer exhaustion day time, just awful. Had blood tests and my folic acid is low. I've took them two days & i'm so depressed, bursting into tears ... I've looked up folic acid levels being low & it says gabapentin can cause the levels to be low.

I've felt tired since taking the gabapentin along with other side effects, but nothing like this tiredness or dizziness. I told my gp this. Shouldn't they have known gabapentin can cause folic acid to be low? And shouldn't they have made the link of when they doubled my dose of gabapentin to my now complaining of these symptoms and the outcome being low folic acid?

I feel I'm not listened to properly by anyone, and I don't really matter to anyone. Just give me more drugs and not really find out what the underlying problems are or find a better solution. Sick of just getting on with it. I'm sick of side effects of gabapentin and now even more so it's been doubled and resulted in folic acid being low and it's awful side effects

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Response from Lorna Gray, Patient Experience, Public Involvement Project Manager, NHS Greater Glasgow and Clyde

Dear Majodom,

I am so sorry to read this as it is clear that you have been through, and are continuing to go through a really difficult time. I can only imagine that this is made worse by the fact that you feel that you aren't being listened to and that a solution to how you are feeling seems unreachable at the moment.

First of all, I am sorry for the experience you had when you had your first meeting with the surgeon. We strongly believe that every member of staff should treat our patients with the upmost dignity and respect, taking into account all of the patients' needs and circumstances - all of the things that mean a patient is truly a partner in their own care. It is clear that you felt a lack of support from this experience, and therefore I would strongly suggest that you ask for a second opinion, as is your right.

You can talk to your GP about arranging this, and it may also help to have another conversation at that time about the medication you are taking and how it is making you feel. I appreciate that you are already feeling deflated and frustrated by the situation as it is already, but it is important that your GP fully understands the impact this is having on you. Your GP Surgery will also have a Practice Manager, who is responsible for the day to day running of the practice, but can also be contacted if you have any concerns about your care.

I wish you all the best with this, and please do not hesitate to get in touch with me either through Patient Opinion, or directly on lorna.gray@ggc.scot.nhs.uk once you have spoken to your GP, or if you have anything else you would like to raise that I might be able to help with.

Best Wishes,


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