Crumbled spine

[Meuslialways]

I'm really looking for someone with Osteoporosis who suffers with the same spinal problems I have so that we can share experiences and support.Over last 15 years I have had 3 lots of Neurosurgery to support my spine which is crumbling. I now have rods, screws and plates holding up S5 to S1 and L5 to L1. Due to the crumbling I now have 2 screws protruding under my skin that have come loose. Next May my Neurosurgeon proposes taking out existing metalwork and replacing it all from my Coxic up the whole of my spine to my neck. I will then be in a body and neck brace for 6 months!!

I have amazing support from my Neurosurgeon and Osteoporosis Consultant.

I would just love to have contact with someone suffering the same for some support and understanding.

So are you out there!!

[Fruitandnutcase]

Goodness me! I’m afraid I don’t fall into the category you are searching for but what a lot of work you have had done and are about to have.

I do hope your big operation in May is a success. It must be a daunting thought though. Although your neurosurgeon sounds as if he has a plan and I doubt if he would do it if he didn’t think it would help.

Hopefully someone with similar experiences will come along for you to talk with.

[Meuslialways in reply to Fruitandnutcase]

Thank you. Yes after so many MRI, CT scans etc that's the only option left as within next 2 years at most my spine will crumble then its permanent wheelchair and unable to do anything. I have to take the chance. My husband and I have spent many hours with our fantastic Neurosurgeon, who is one of the top 5 in the country, with so many questions. Have never felt hurried and all under NHS. So lucky to have been referred to him by my local Neurosurgeon. Only one very small problem he operates in a Neurosurgery hospital many many miles from where we live.

[CallMeSunny]

I am in a similar situation to you, Meuslialways, having been advised to have the same surgery. Currently I have instrumented fusion of the whole of my lumbar spine with 2 healed fractures, a severe retrolisthesis of L1/L2, scoliosis and osteoporosis. The reason for the proposed surgery (removal of existing metalwork and replacing with metalwork from coccyx to neck) is because of the threat of the retrolisthesis worsening to the point where I too would be wheelchair bound. At present I’m badly stooped and have constant severe nerve pain which is difficult to control (morphine patch plus 600mgs daily pregabalin) . I’m unable to walk further than a few metres unaided so now rely on a walker and a mobility scooter. Unfortunately, I also need blood thinners (DVTs) and have asthma and inflammatory arthritis. I am 78 and live alone. I have decided against the proposed surgery (Bristol NHS…60+ miles) because of my comorbidities. Is your osteoporosis specialist a rheumatologist? I wish you the very best of luck; your ‘iron corset’ will give you so much more confidence to go out and about without worrying.

[tinlizzie]

Hello, I'm very sorry to hear of the experiences of you both above and can relate.I have sent you a pm Meuslialways regarding my similar experience, although mostly the upper spine in my case, but lumbar spine also.

Severe RA for 52 years and osteoporosis damage.

It's a difficult decision regarding further metalwork surgery and severe osteoporosis but it's sometimes a help to be told there is no choice. Ive had some jaw issues due to the prolonged use of some the drugs for the OP..

I wish you both all the very best in your spinal journeys.

[Missus835]

Wow! So sorry to hear what you're experiencing Meuslialways. Mine nowhere parallel what you're going through but please know you have all our support and encouragement. I'm sure there's no good alternative to your surgery. Will the surgery stop the crumbling?

[Meuslialways in reply to Missus835]

No it wont stop the crumbling as such but all the metalwork will support my spine . As a screw came out even although it was fixed in with bone cement last operation March 2023, this time they will all be fixed in with bone cement and "Ties"put across to stop screws moving hopefully! Thank you for your kind words and support.

[Missus835 in reply to Meuslialways]

What a huge operation! I thought my 2 vertebroplasties were a lot. Will your back be stiff?

[Meuslialways in reply to Missus835]

I wont be able to bend or twist but I'm used to that as after my last 8 hour op I cant bend or twist anyway! For many years have bent from my knees and twisting, I just turn my whole body round. I would rather not be like I am at 80 but I and my husband have had an incredible life having been a bit of an Adrenalin Junkie!! One cant have everything but amazing photos and experiences to look back on!

[Missus835 in reply to Meuslialways]

There ya go. Good you've got a great husband and your positive attitude will see you through. Keep us posted M.

[Numptybrain]

I’m very similar but unfortunately due to my other health issues it’s not possible to have any more spinal operations, I’m currently struggling to stand for short periods and a new wheelchair with plenty of support is already ordered by wheelchair services. I actually hoped after my last surgery in 2021 I would be walking with my rollator for a lot longer but unfortunately it’s not looking that way. Good luck on your surgery, I wish you all the best.

Take care

Wendy xx