neck stabilisation

[Afcbsupporter]

Hi I have suffered with RA for 40 years & have various joint replacements, but am just about to go for the most scariest one, it will be at the London neurological hospital where they will put like a scaffolding (nuts & Bolts) through & round the top of the spine, which will mean no future movement of the neck - It is to save the risk of paralysis. Has anyone had this Op & how easy was it to adjust?

[nomoreheels]

I've not had it, thankfully my neck's nowhere near as bad as yours but just to wish you all the best for your op, that it's a complete success & you have a straightforward recovery. It's a scary thought but so is the alternative & for that reason I'm sure it's necessary.

I trust if anyone here has had the same op they'll be along to share their experience & adjustment, maybe even help with post op advice.

[Afcbsupporter in reply to nomoreheels]

Thank you.  I would just say to you, that if your neck starts hurting then make sure that you get an x-ray or MRI scan regularly, mine was checked around 5 years ago, & since then its got worse & worse, but every time I was fobbed off when I mentioned it, then after insisting seeing someone, I got sent to a physio, who I am so grateful to, as I would most possibly be paralysed now.

take care

sarah

[nomoreheels in reply to Afcbsupporter]

Thanks Sarah. I have brought it up at each Rheumy appointment & again only a fortnight ago but I'm asked each time to see my GP as she manages my OA (I have a diagnosis of cervical & lumbar spondylosis as well as RD). I wasn't able to see her but one of the partners & started trialling adding another morning dose of my nightly amitriptyline. I intend increasing the dose this week as discussed, if that isn't helpful I'm to have a telephone consultation to determine if I'd benefit from referral to my local Pain Clinic. Possibly they use imaging to determine what they're dealing with, not sure but I'll keep your advice in mind. Thanks again.

[Afcbsupporter in reply to nomoreheels]

Hi, I was referred to my GP & got some cream to rub in! then the clinic has said its age, then  wear & tear,  - Because its a joint not on the charts they use, it seems its not dealt with.  Finally after seeing the physio I had a x-ray only to be sent for an urgent MRI scan followed by a CT scan, as they then saw how bad it was, was referred to the neurological hospital even before I attended the clinic as he was then worried.. The bone at top of my spine has worn from a usual 2cm to 7mm & very close to the spinal cord, therefore when I got referred to the neurological hospital in London they said they were surprised I'm not already showing signs of paralysis & should I fall or get a big knock I probably would be paralysed!  Therefore I'm off to the hospital this afternoon for the op tomorrow which hopefully will prevent this happening but means no neck movement.  With regard to the amitriptyline, I believe these deaden the nerve ends but obviously cant do anything to bones - I suggest you keep insisting a scan to give you peace of mind. 

[Hidden in reply to Afcbsupporter]

Wishing you the very best for your neck surgery, thinking of you xxx

[Leviblu18]

Hi I have had neck disc replacement around C4,5,6. Only in hospital for two days then a 12 week recovery at home, definitely eased some of the pain but having RA with it doesn't help.

Best of luck with it  

Shaz

[Afcbsupporter in reply to Leviblu18]

Thanks, I've been told  I'll be in hospital for 7-10 days & my worry is getting my confidence!  eg crossing a road, trying to read, or use a computer etc without being able to look sideways or up & down. Its better than being paralysed so that's the way I have to look at it.  Hope your pain gets better.

Sarah

[sylvi]

I haven't had anything like that and i wish you will in having it done darling.xxx

[Afcbsupporter in reply to sylvi]

Thank you.

[Cagsie]

Good luck with the op, wishing you a speedy recovery xx

[Afcbsupporter in reply to Cagsie]

Thank-you.

[Someonesmother]

I haven't had a neck op but been told I will in the future when it gets bad enough. I wish you all the best and hope it all goes well. Please let us know how you are going and how you are coping with it all.

[Afcbsupporter]

Thankyou, I've just confirmed they have got a bed for me, so op is tomorrow!  Ill let you know how things go - I'm in hospital for up to 10 days.

[3LittleBirds2 in reply to Afcbsupporter]

I wish you all the very best for tomorrow...you sound like a very brave and positive lady!  You're also right about the way they fob you off about your neck, two years ago I developed quite distressing tinnitus which unfortunately has never left, I woke up one morning with a painful neck and the tinnitus, they did hearing  tests etc and I saw a ENT Consultant, they said it was probably caused by TMJ joint but I'm convinced my neck is causing it as when that is bad...so is my tinnitus!  Sorry for making this comment about me but I just wanted to emphasise your point of them fobbing our necks off.  Good luck, please let us know how you get on.

[Afcbsupporter in reply to 3LittleBirds2]

Thankyou

[BoneyC]

Yes, I had this surgery in May 2002.  I'm now fused with titanium rods and 8 screws at levels C3-C6.  I've had RA for 45 years, dx 1971.  Apart from the fused neck, although mine was pretty stiff anyway before the surgery, I'm really grateful to the neurosurgeon that I came out of it alive and not paralysed. 

I've adapted my driving, i.e. avoid certain junctions where you really need to look right, almost over your shoulder.  I would say this surgery was easier to adapt to than having THR's, one of which was infected and removed, tendon cut, they give me more grief.  Neurosurgeons are at the top of their game, better than orthopods, should know what they're doing, good luck with yours.

[Afcbsupporter in reply to BoneyC]

Hi, i've spent the last two nights in hospital however unfortunately didn't get to have my operation due to the time taken for the previous two ops due on same day, (theres always someone worse off than ourselves) hopefully it will now be in 3 weeks time, I see you have had an op something like the one i am due to have, and wondered if you have any movement from side to side, or up & down?  as when i first saw the surgeon he told me there would be no movement at all side to side & only a very small movement up & down, but when one of his team came to see me on the day the op was due, he said I would still be able to move my head side to side about half of the normal rotation which contradicted what I was originally told,. I was also originally told driving would never be able to happen.  Having sited myself up last week I now just want to get it over with, but still very worried about getting about in the future,

[BoneyC in reply to Afcbsupporter]

Hi,

Disappointing you were postponed at the last minute. 

I don't have much up and down or side to side neck movement.  However, my neurosurgeon told me at the time that my atlantoaxial joint (right at the top of spine)  was fused because of the RA anyway.   Consequently, my neck muscles have wasted and I'm very boney around the neck.

Driving ought to be okay, I adapted my driving to avoid certain junctions that I know would be difficult for me to exit from.  These days there are more traffic lights at roundabouts/junctions anyway.  If I am driving somewhere new, I check it out on Google Earth first.  I had RA as a child, before I passed my test, so I've always had " needs suitably adjusted mirrors" on my licence.  You should be ok to drive.

My neck was unstable.  C3 had subluxed (staircase effect) onto C4 causing chaffing of my spinal cord.  I had about a dozen symptoms, shaky legs, tiredness, unable to walk very far/breathlessness, basically it was affecting everything from C3 downwards. 

My surgery was called a laminoplasty and fixation.  They hinged open the spinal processes at the back of my neck before fixing them back together, leaving more space for my spinal cord, with plates and screws.  Due to my relatively young age (38), he preserved my spinal processes, in older patients they remove them completely.

I was told not to reach up with both arms as it could weaken the scaffolding but, my RA prevents me from raising my arms anyway. 

The reason it took me a while to get back to "normal" was due to weakness in my legs.  It took 7 GP appointments & finally a private neurologist appointment to get a diagnosis.  He was very cross with my GP Surgery for not spotting I had a cord lesion.  From that appointment, I was operated on within 2 weeks.

I wish you well for your surgery.

[BoneyC]

... I went into hospital on the Thursday, surgery was early Friday morning, about 4 hours, by that evening, they assisted me to get out of bed, drains attached, to use toilet.  The next morning, they assisted me to have a shower and wash hair (some had been shaved off near my neck) but the top hair covered this - quite a neat job.  I needed lots physio to rebuild my leg muscles and was weak, but came home after about 5 days.  I had staples, op was done posteriorly (from back) and large waterproof dressing over the top.  I kept thinking about Martin Kemp, ex Spandau Ballet, he's had brain tumours, and survived, at least this surgery isn't near your brain.

[PFKAAde]

Hi Sarahjelfs 

Sorry for the length of this post.

I haven't had the operation you describe, but over the previous few years I have had one or two of my own spinal problems. 

My problems (and incidentally this has nothing to do with RA) started a few years ago when I experienced 'foot drop' overnight in my right foot, meaning I couldn't lift my foot up from the ankle. I saw a specialist who IIRC did a scan and then, as it had recovered spontaneously, discharged me.

Fast forward a year or so and, my first slipped disc, it was lumbar - I think L4/5. I had an injection in my spine and over a 'standard' 2 - 6 weeks it recovered and I was discharged.

Fast forward another 2 years and the symptoms recurred, only this time I tried to battle through, thinking it was 'only' 6 weeks tops of pain and it would be OK. Oops. About 3 months later I decided to go to see the GP for a referral to the Spinal surgeon that I had seen previously. The next day (and 3-4 days before the GP's appointment) I woke up and couldn't walk, I had no strength in either leg and couldn't move either foot properly. At this point I should have gone to A & E but being stupid thought I'd wait till my appointment as I wanted to ultimately see the same surgeon (he was highly recommended and I trust him). I saw the GP who gave me a letter and let me go. This was on a Tuesday and I saw the specialist on the Friday. 

He was not a happy bunny. He couldn't believe the GP had let me walk (drag myself on my crutches) out of the surgery. He said they should've called an ambulance there and then. Anyway he cancelled sone other appointments and operated that night, performing a lumbar spinal decompression with a nerve root block / epidural. I had a very quick and almost complete recovery within a couple of weeks, much to his (and my) surprise. 

About a month later I woke up to a repeat performance. This time I got straight in touch with the consultant who did an MRI from the base of my skull to the very base of my spine (although when I was in the imaging suite they said they were doing the top and the bottom - I complained loudly, they did the lot). This showed that I had pushed out another disc just above the first in the lumbar region, one in the thoracic (see, I told them to do the lot👿) and one in the cervical region. 

He then performed another spinal decompression surgery on my neck, in his words to prevent it from becoming any worse and causing permanent paralysis. This made no difference in terms of recovery, but it has at least done what he said, so far. 

I then went for 6 weeks or so with no improvement whatsoever before he did the first of 2 more root block / epidural cortisone injections into the lumbar region. Both of these have made a difference in terms of pain / mobility. 

I am due another next Tuesday, although unfortunately the insurance company (it has all been private through work-based health insurance) have pulled the plug so I have to pay for it now. 

I have recovered some mobility and have less pain now than I did, say 6 months ago, but it is a long, hard and extremely painful slog. Not to mention the fear that I am one fall / knock or unexplained slipped disc away from paralysis. I have also been diagnosed with degenerative lumbar scoliosis. For my sins. 

So I feel your pain, literally.  I understand your fear. I have been told we are desperately trying to avoid further surgery as it will involve plates, screws and scaffolding (lumbar not cervical) and I really don't want that apparently. No sh#t. 

However I also understand the need for it, and can vouch for the fact that an immobile  neck is far, far better than being paralysed from the neck down. You really don't want that, as you are aware. 

The only advice I can really give you based on my experience is that as bad as you may feel post-op, it will get better. It might take time, and it might not feel like there is much progress at times, but it will get better. The pain will ease. You will get your life back on track and develop coping strategies for your immobile neck.

You will need time to adjust, grieve for your loss in fact. Because to me that's what it feels like. I don't think I'm ever going to be doing some of the things I used to again. And nothing can quite prepare you for the feeling of being told by a physio / doc to lift your foot and being utterly incapable of responding. It might not be like that for you, we have different issues for a start, but if it is, know it will get better. 

Do your exercises. All of them. But don't push it too hard, there are risks just not worth taking. I have learnt how important the spine is, when it goes wrong it can be devastating. And if the doctors are saying you need this surgery, they won't have come to the decision lightly. 

I wish you all the best for a speedy recovery and a long and mobile life.

Good luck.

Ade

[Afcbsupporter in reply to PFKAAde]

Thanks for your reply.  Unfortunately after getting all ready for my op, after laying in my gown & sexy stockings all day on Tuesday,  it had to be cancelled due to the severity of the previous two ops the surgical team performed on the day  (always someone worse than ourselves) I am now hoping to go back in about 3 weeks time.  I know that no one operates unless it is needed & am so grateful for this, & know that in time I will be able to adjust just as I have with all my previous ops, but was just interested to hear from anyone else how easy they have found it to adjust, for things like crossing road, not being able to look downwards when walking or climbing stairs etc .  As you say anything is far better than being paralysed.  I hope you continue Ok & that you wont need any further surgery.  All the best Sarah

[Gerardus]

Hi Sarah,  Been there, done that, had the op.

My Time Line

Summer 12: Bad ankle pain, uncomfortable standing still for more than 10 minutes, thought to be gout and treated for same. Only able to walk slowly, Difficulty holding my head up straight.

Autumn ~ Winter 12; Ankle gives way without warning took a tumble in Garden and again in street. Knee gives way crossing the road, joint pains. Diagnosed with RA in March 13. Blood shows drugs are working by end of April, walking and standing worse than ever, need to use a walking stick. Piercing pain in bottom left of head, comes and goes no reason, can no longer write or shave with right arm/hand.  Left hand feels cold and numb, Left leg skin feels like it is being flayed with stinging nettles 24 hours a day. Nerve conduction tests show it is not MS but there is a carpal tunnel problem. MRI shows Cervical Discs damaged by RA, bulging into spinal canal crushing the spinal cord - causing spinal stenosis. Neurologist view is get the laminectomy before paralysis and double incontinence as nerves are progressively disconnected. Surgeons view. 60% get better, 20% some improvement, 20% get worse.

Winter 13: Cervical Laminectomy with screws C2~ C4. Result - right arm working again, No more pains in bottom left of head. Leg and hand sensations no change. Right thigh muscle still not working as it should standing and walking still compromised. Told 12 ~18 months for nerves to reconnect if at all. 5 days in hospital, walked around with stick, up and down stairs, pee and poo-ed to be allowed home.  75% head movement side to side. Holding  head up is possible but needs muscle exercise to maintain position comfortably, head back 0%, head down to chest no problem. 

Physiotherapy for 4 sessions, keeping up exercises at home these are on-going. Easier in swimming pool once a week - can only swim on my back!

Summer 14: ~ 6 months on Neurologist said it won't get any better - the spinal cord is scarred, try Gabapentin for pain relief. Leg muscles still not connected, continuing left leg skin pain, left hand feeling frozen .

Spring 15: Not too bad Walking a bit better.

Summer 15: Not too good, came off Gabapentin higher dose made me feel ill

Spring 16: Eighteen months since the OP, no improvement, trying Gabapentin again.

Conclusion:  Damaged Nerves can repair themselves if they are not left too long. The Op may get you back to near normal or at least restore some of what's been lost. Better outcome than paralysis and incontinence. Cured my worst symptoms but not all. Still on RA drugs to control the disease. Sorry I wished I could say all will be better, but something better is better than nothing.

  

[Witness1]

Really feel for you Sarah but it sounds as if you're in good hands and that your op is unavoidable and vital. You'd kick yourself (ha!) if you didn't go ahead and found yourself paralysed. My neck fused naturally (C2-6) and the pain pretty much stopped but instead I get headaches if I lift carelessly or even from social situations when I'm trying to turn from left to right too much. I'm just relieved that I don't have such a high risk of compression. You sound like you've been through a lot and although this is scary my hunch is you'll cope - you're doing the 'work of worry', mentally preparing yourself for the experience and that's healthy. I've read research that shows when patients worry in advance they do better than those who don't - because it's less of a shock when one is prepared for something. I'll be thinking of you tomorrow and hope you'll be back on HU when you feel up to it. 

[trianon]

Hi, Good luck with the operation.   I've had RA for a long time (58 years - since 1958 when i was 2).  Like you I've had many replacements - and I've always been told my neck is very delicate and not to force any movement or else I could end up paralysed.  (Not that I have much movement there anyway!) I wore a collar for many years when i was a child - a hard collar that fastened with buckles etc.  I've had many MRI's on my neck and spine (which is now curved) and been told they are getting worse and an operation is inevitable.  Its scary that there are going to be even more things that we probably won't be able to do after - and there are more than enough now!   Very best wishes and luck with the op.  Do let us know how it all goes. X

[Nanapapa6]

My husband had this op else he would have lost the ability and stand and walk and eventually he would not been able to breathe, had metal plates screws put in and could not turn his head etc but stopped his pain unfortunately he passed away a year later, but not related to hugs head problem or surgery

[Afcbsupporter]

Thank-you - booked again for this coming Tuesday