Spondililothesis

[Trec]

I have this condition and am now in an awful amount of pain and am wondering if anyone else here has it too. I have been told that medication is the only treatment available to me but neither Gabapentin nor Pregabalin have helped so I stopped taking it after allowing plenty of time for it to do so. The pain has increased significantly since diagnosis 3 years ago and I now find walking, in fact moving , very painful. I have to say that the only reason I know the name of the condition is because I asked a locum GP for a copy of my notes some months ago as I am considering applying for a Blue badge. It hurts to drive but so far I am managing to do so for local short distances when essential. I just wanted to share as I confess that having researched the condition I am fearful of the future and would welcome any advice.

[Alloagirl]

Hi, yes I have this condition. Grade 1 with some stenosis. I had an MRI just before Christmas. My GP told me I had wear and tear of the spine and to keep walking. I managed to see the report from the hospital and found out that way that it was a bit more than wear and tear. Found out from friends that I could self refer for physio which I now have exercises and am in their programme. In fact they know more about the condition than my GP. I also take cocodamol but just twice a day. In America they really go for the operation (fusion) I don’t fancy that but I really think it has to get to Grade 4 before that is considered here in UK. I belong to a group on Facebook. It is really good as you can discuss what affects you and how others manage. Have you ever tried physio. Were you told about it at the start of your diagnosis. I am not happy with my surgery, they just gave me painkillers and told me to keep walking. Useless. Hope you find a way to get some help with this.

[Trec in reply to Alloagirl]

Thank you so much for replying. Could you let me know the name of the Facebook group please. Yes I have seen a physio but my first port of call was a chiropractor as it was 2020 and access to my GP was impossible. She said I had hypermobility though not connected to my pain but when she couldn’t help she wrote to my GP who didn’t speak to me but got the surgery receptionist to arrange an appointment with a physio at the practice and the physio just focused on that hypermobility and ignored anything I tried to say. She just referred me to Orthopaedic Choice who were more helpful and arranged the MRI and later showed me the printout which showed the chord trapped by the vertebrae but no mention of the actual condition. They said medication was the only option mentioning Amatryptaline and Gabapentin and wrote to my GP. Apart from handing out a prescription my GP has had no connection with my condition even when I stopped the pregabalin and it is extremely difficult to get an appointment with her as she and all our GPs only work part time. It was when seeing a locum about somethjng totally unconnected that I asked for a printout of my recent health record as obtaining a blue badge isn’t easy and I felt a simple - and common - complaint of back pain was unlikely to be accepted. Then I saw the diagnosis from the MRI, of course googled it and the increasing pain made sense. I was 25% in 2021 but fear that must have increased now as I could walk to a local shop then and upstairs etc and sometimes felt little pain but not now. The pain is constant and can be excruciating and I go out only when essential as even moving around the house is too much. I take Codrydamol but not all the time and I don’t think it helps much and I would welcome an operation but doubt that will be possible as I am over 80. I hope your condition remains stable and thank you again for helping me feel not quite so alone. x

[Trec in reply to Alloagirl]

I have found 3 sites in Facebook so thank you for mentioning it.

[Harefieldfan]

I have this. Compounded by eternal sciatica. I don't take the drugs -- don't think they'd help. Have had physio and various injections. I do exercises -- pilates helps sometimes. I find walking helps, probably more than other things. The Facebook group sounds interesting, Allogirl. What's it called? Also, I was once recommended a book called 'Pain Free'. It uses a technique called Egoscue -- invented by Pete Egoscue -- details exercises that help many conditions, including spondy. It might help you -- available on Amazon, probabably. I try to ignore it as much as possible. Depends if the sciatica is bad. I was refused an injection into my sciatic nerve because I'm on a blood-thinner and the surgeon was afraid I'd bleed into the nerve. Good luck!

[Trec in reply to Harefieldfan]

Hello, thank you for replying. I was able to walk for some time but now it is too painful to do so even though I now use a stick for support which helps to keep me more upright and even moving around the house can be agony. Yes, distraction is helpful and is one reason I hope to obtain a blue badge so that I can at least go out and maybe park somewhere with an uplifting outlook as well as manage to shop more easily when necessary. I have a long time sciatic problem too, on the opposite side from the Spondy site, and this was reignited after my first visit to the chiropractor. That comes and goes but is worse when I get up in the morning when I struggle to get to the bathroom. It sounds as though the book could be helpful, I’ll take a look at it and thank you for mentioning it. x

[Harefieldfan in reply to Trec]

Mine is worst in the morning, too.

[Alloagirl]

Hi, the FB group is Spondylolisthesis (Anterolisthesis/Retrolisthesis) Support. It is a global group so a lot of Americans in the group, surprising how different their treatment is to ours. There is a UK one too, but I have applied to join a couple of months ago now but is still pending 🤷. Still the one I belong to now is really good. My pain is mainly my right leg. Very painful to walk, now have some pain in my back and very difficult to walk at times, I have a rollator but have only used it once. Luckily the physio had access to my records and my exercises are specifically aimed at the spondy. Trec what difference does your age make. Your GP should refer you for more investigations and whether an op would be possible. There are steroid injections that I know work for some. The cocodamol do work somewhat for me. Especially when I go out.

[Trec in reply to Alloagirl]

Thanks, I’ve applied to join all three now! I’m not sure if the UK one is one of them but that would be helpful as the US can be very different from the UK in what is possible and available. I am going to try to get an appointment with my GP - or with any! However I once belonged to an online support group for Alzheimer’s (for my husband) and if this is even half as helpful as that was I’ll find more support from these groups than from my GP!

[Trec in reply to Alloagirl]

Thanks so much for mentioning that group. I have learnt so much from it even though so much is from the US. I also joined Spondylolisthesis Support group which is also international and has fewer posts but the most helpful has been Spondylolisthesis UK which has been very supportive. I don’t think it will affect my progress as that of course depends on local clinical support but advice and encouragement is good and just knowing you’re not alone.

[Alloagirl]

Hi, glad you found some support from the groups. For some reason I have not had a reply from the the two UK ones. I applied about a month ago now. As you say most of the posts are from the American members. It seems they go for surgery quite early on. They are more cautious here in UK. Not that I fancy surgery at the moment being Grade 1. See how the physio goes.

[Trec in reply to Alloagirl]

I’ve only seen one group and was accepted there after a day. Someone on the one you mentioned above said the uk one wasn’t very active but I’ve noticed quite a few new members joining just over the days I’ve been there. Perhaps it’s the other UK group I’ve not seen they were referring to. I joined, but am no longer following, the group which included Back pain and Spondylitis even though I have the latter in my neck but I felt it was too general for me.