Spondylolisthesis- no information from gp

[TeachKat]

Hi all, I have just received the report from an x-ray of my lower back which was done at the beginning of September. It says that the bone in the area is osteoporotic (which I already knew) and that I have spondylolisthesis in L5/S1.

I have obviously googled it and learned that it means a vertebra has slipped forwards out of place but I have been given no information about the implications, what I should or shouldn’t do, or about pain relief. My back is very painful, with sharp muscle spasms and I just feel in limbo.

Sorry to be moaning again!

[Celtic]

Over the years I have learned to live with my spondylolisthesis after much pain in the early years. During any painful episodes starting I would don a surgical corset for just a few days which worked miracles. Also, I always have to sit in supportive chairs and only sleep on mattresses that are firm.

I have known people who have had surgery - some have been successful, some not. Each consultant I saw had a different opinion with regard to surgery!

[TeachKat in reply to Celtic]

Thank you!

[bluebell99]

Who arranged your xray? If it was your GP then I think you should discuss pain relief and ask for a referral to a Spinal Clinic. Also ask for a full blood test, particularly vitamin D and calcium levels as this may be a good time to start Calcichew, Adcal etc to strengthen your bones.

A Dexa scan will give a better indication of the porosity of your bones and will be useful if further treatment is recommended or needed.

My lumber spondelolithesis started about 6 or 7 years ago when my right knee was replaced and an inexperienced anaethetist was trying to give me a spinal block injection for the pain during the op. After about six times of pushing and trying to inject all around the right vertabrae he suddenly hit my spinal cord and the excrutiating pain made me jump which dislodged the discs. The spondelolithesis has never improved, nor will it but the pain became more bearable over about 9 months.

My advice would be not to ignore this or be fobbed off. If physio is recommended make sure your physio is competent with spinal problems.

I wish I had taken all the advice I read or was told about my spine as at least I could have delayed the vertabal collapse I suffered last year. The multiple fractures I have had has left me permanently disabled.

Please do not ignore this, I am not out to frighten you but be careful and do all you can to prevent further problems.

[TeachKat in reply to bluebell99]

My goodness- you have gone through a lot! Thank you for replying to me. It was my gp who ordered the x-ray - I have already been diagnosed with osteoporosis from a Dexa scan - t-scores between -3.7 and -4, with FRAX predicted 49.8% risk of major fracture in the next 10 years. The osteoporosis is due to long-term high dose steroids for asthma. I started taking alendronic acid 6 weeks ago. I just find it strange that gps give out results with no information- I’m going to ring on Tuesday and ask for more support and information.

[bluebell99 in reply to TeachKat]

Hi, my osteoporosis was mostly caused by long term steroids for lupus, but I recently found out from this forum a few months ago, that the PPI's which are supposed to protect your stomach, can also contribute to osteo by stopping the absorption of essential minerals and vitamins.

I brought this up with my GP who immediately reduced the dose. I have been taking Omeprazole for over ten years so I am amazed I was not warned of this. To say I was cross is an understatement!

It does seem a bit hit and miss with information from GPs. I think that with modern technology they expect us to find out all about it ourselves, either that or they are really unaware of the causes and consequences of osteoporotic fractures.

I am glad though that you have had your DEXA scan even if the results are not wonderful, at least now you can look after your bones and hopefully avoid any further fractures.

Have you been referred to an Osteoporosis Clinic? They will monitor you and if you have any problems with the medication or increased pain they can advise. Also ROS here are very helpful especially with coming to terms with what has happened to you.

I wish you good luck and a good future, be careful and just be aware you are not superwomen!

[TeachKat in reply to bluebell99]

Hi - I have also been on Omeprazole as all the asthma meds upset my digestion so much! When I heard about the PPI -osteoporosis link I started to reduce them as much as I could and now I only need them occasionally. Like you, I do wish that doctors would tell us about all this. I have spoken to the ROS helpline - they are a very good source of information, as is their website.

I’m planning to speak to the gp tomorrow ( I don’t work on Tuesdays) and to ask about referrals. I do have a rheumatology appointment coming up in a few weeks- the gp thinks I might have rheumatoid arthritis as well - and I’m hoping that that might be another route to some more help. The ROS. nurse said that I should be referred to a metabolic bone clinic but the gp just refused straightaway.

Thank you again for taking the time to help!

[Collywobbles64]

Hi TeachKat. I also had spondylolisthesis at L5/S1 and finally had my operation last December with Professor Shad. I was getting nowhere with the nhs so had to have a private consultation at a cost of £250 but the Professor who saw the same MRI and said straight away what the problem was. I had my operation on the nhs with Professor Shad, who put me on his nhs list as he said I shouldn’t pay for the operation. I had also had a nerve conduction test which showed chronic changes in my L5 nerve down my left leg. I no longer have that pain so it is the best £250 I have ever spent. Trouble is I also have MS that has deteriorated so I have problems walking but apart from that initially I was able to walk and stand although in pain from the operation pain free if you know what I mean

[TeachKat in reply to Collywobbles64]

Thank you for replying - it can be so difficult to access NHS treatment! I’m glad your professor put you on his NHS list. I have weird numbness and electric shock type sensations down my left leg too. I’m sorry that your MS is causing mobility problems.

[Mavary]

It’s no fun to have back problems. I know Im suffering with seven fractures in my back . It changes your whole life as there is so much I can’t do now. I don’t know about you but I can’t do. The only place I’m comfortable is my chair or bed once I get comfortable. As for medication I’m at the moment sticking to paracetamol and CBD oil. It doesn’t take it completely away but I’m a bit worried about going on anything stronger. Some people say Cocodamol but that can make you constipated. Your Dr can give you stronger drugs in the form of medicine or patches. I’ve not been on here long so someone else may have better ideas than me.

[TeachKat]

Hi - you’re right - not fun at all! I worked out the two things that give me pain - firstly, moving and secondly, not moving!🤪I spoke to the gp today and she offered to prescribe strong painkillers but I really hate how they make me feel. I have some prescribed codeine, and ‘treat’ myself to a couple every now and then at bedtime when I’ve been running really low on sleep. ( Codeine does cause horrible constipation!) Otherwise I’m just using capsaicin cream, which helps a little.

[Mavary in reply to TeachKat]

I’ve got CBD cream and jellies as well as drops but like you I don’t like taking anything. I do take the paracetamol and CBD when I’m desperate. I was told the worst bones to go are down the bottom. My T12 is the worst. They have said it’s severe. Otherwise the others are above it. I hope they can do something to relieve your pain.

[TeachKat]

Thank you - I m sorry you have so much pain!

[Jeaniem130]

I just started epidural spinal steroid injections for bilateral sponylolisthesis among some other spine issues, no positive results yet!