anyone rlse

[katekelly]

Hello everyone, just wondering if anyone has experienced this and could you give me some advice please. I recently had numerous X-rays for neck, back, shoulders, hips and an MRI on my neck. Results show widespread damage to numerous joints which wasn’t surprising as RA has been a recognised factor in my life for nearly 3 decades. My concern however is my neck. There are bone spurs growing towards and touching the sheath around my spinal cord. My rheumy has referred me to a neurosurgeon but I’m still waiting for the appointment to come through for that and I don’t see my rheumy until January . My question is have any of you had this (i.e this sort of neck problem and if so what treatment did you have)? Many thanks and a happy Christmas to you all xx

[AgedCrone]

Not exactly like you….but I had surgery on my spine at C4/5 many years ago & when I first heard the diagnosis it really worried me, but even all those years ago the work neuro surgeons could perform was amazing,so don’t get too worried.

That was a long time ago & I’m sure what is available now is far superior.

Hope your neuro appointment comes through soon…do let us know how you get on.

[medway-lady]

Not exactly the same at all, but years ago I had a disk slip out and press onto spinal cord. I woke up and had no movement or feeling on right side. I dropped a cup etc rang gp and same morning had an MRI. They said could operate but by that time I’d seen an Oestopath it took months and a lot of money but he got the movement back, and sensation which the hospital said was unlikely to happen. It never hurt but I was told that’s because the disk pressed in hard due to a whiplash some months before. I hope you get help as pulling up the knickers was really hard with no functioning right hand and try to cut up food was really difficult. I sympathise with your fear and really hope that you get the right treatment. The only reason I never went for surgery was I thought I’d give the Oestopath I’d known for years a go before anything else and he could not make it worse as it was already bad. Xx

[AgedCrone in reply to medway-lady]

Mine was due to whiplash too…..I elected to have the surgery after having seen how on the MRI the damaged vertebrae could with certain movements impinge towards my spinal cord. The two vertebrae were badly damaged & the surgeon explained they would deteriorate & one wrong movement could be disastrous.Ouch!!

I saw him on the Thursday and had the surgery the following Tuesday .It was only afterwards I realised how serious it had been.

The surgeon took a bone graft from my hip & mixed that with some sort of clinical ‘cement’ & somehow fashioned two new vertebrae. The neck part was almost painless, but the hip took a long time to settle down.

I think I took the right decision for me. I was back playing tennis within about nine months - slowed down by the hip, but the neck was fine for years…..altho now I have OA in my neck, but I would not have dreamed of taking a chance with such an unstable condition…& as I said before, I’m sure in 2023/24 procedures must be vastly improved.

[Mama-K]

I am sorry Kate I don’t have any specific recommendations but I would suggest that if you speak to your Rheumatologist’s secretary, you can ask if they can exspeadiate your neuro appointment. Particularly if you are in pain. I would have thought you could get a sooner appointment as your case is complicated by RA & it’s so important we can keep moving.

[BoneyC]

I had spinal cord compression following whiplash injury in 2001. Doctors said I would have had the problem anyway because of RA. Apparently I have a constitutionally narrow spinal canal and C3 had subluxed onto C4 and was chaffing my spinal cord.

Symptoms were very mild to start with so I ignored them, but 2-3 months later I was getting intermittent numbess and tingling down arms into hands, shaking legs, extreme tiredness over and above usual RA fatigue, breathlessness etc.

The outcome was a laminoplasty and fixation of C3-C6, or decompression of my spine by removing the spinal processes and fixing it all back with titanium rods and screws to allow more space for my spinal cord. I was considered to be relatively young, so the neurosugeon put my spinal processes back.

I'm not a doctor, but would imagine your treatment will depend upon your symptoms, if relatively mild they might wait, keep an eye on you, until you become symptomatic before considering surgery. Hope you get some answers.

[Kati66]

Hi katekelly,

I’m in a similar situation and getting very worried about it, I’ve had problems with my neck for five years now and three years ago I had artificial disc replacements at c4/5 c5/6. I now have complex bone spurs pushing on my spinal cord and have been referred to the neurosurgeons at Sheffield . This was an URGENT referral in April. When I enquired what was the progress of my referral in August, I found out the letter had been lost!! After many emails between Lincoln neurology and Sheffield, I’m still waiting to be seen.

My symptoms are shaky hands, severe neck pain and headaches and my legs give way when I get up from sitting, scary stuff 😞😞😞. The neurologist feels I will need more surgery and I fact after the disc replacements in 2020, the surgeon said my neck was “a mess inside” and would likely need more surgery in the future. He was right!

I think mine is more osteoarthritis as the RA joined the party about two years ago. I hope that you get an appointment soon 🫰🏻🫰🏻🫰🏻 and enjoy Christmas as best you can. Xxx

[Runrig01]

I have ankylosing spondylitis rather than RA. About 12 yr ago, I developed severe neck pain. An X-ray showed my C spine had been pulled straight with spasms. It was about a year later, that I was told I had a slipped disc ant C6-7, and 4more years before they discovered the disc was calcifying and turning to bone. My latest mri showed its completely bone now, and pressing on the outer layer of the cord. At the moment I can tolerate it, it’s generally the tingling in my fingers and palms. I’m classed as a high risk for surgery, so they would rather only do surgery, if it was an emergency. The neck itself is not so severe, although I get a lot of spasms in my neck, I have Baclofen that helps with those. Good luck going forward 🤗

[Midge1952]

i has bone spurs in my neck on the cervical column -C4-C7- and was operated on in April, 2022. My neck was then supported by rods. My v surgery went well. My very best wishes to you as RA is so hard to deal with and can affect so much of your body.