Severe Spinal Stenosis Surgery and RA/PsA

[MadamePetitPois]

Hi everyone, haven’t posted or respond to people for a while as I’ve been in quite a lot of discomfort.

As I’ve previously posted about I was initially diagnosed with rheumatoid arthritis and then psoriatic arthritis . I have a history of 30+ years. Following a recent MRI scan, my spine has deteriorated and it showed L4/5 severe stenosis with grade one spondylolisthesis with possible movement in flexion and x-ray. They have recommended that I have surgery to correct this. There are two options. Simple decompression and decompression and fixation.

Just to add my spinal condition was picked up at an MRI in 2016, and they decided to just wait and see and although it has deteriorated I’m not sure that it’s that much different??

The letter that I’ve been sent discusses all the risks and to be honest I’m absolutely petrified. On top of this, I will have to stop all my medication including my immunosuppressant injections.

Has anyone else been through this? I keep thinking about it and at the moment I’m just happy to have the simple, but it may be that they advise that I have the full fixation

Today I received a surgery date for the beginning of next months which is much sooner than I initially thought would be the case. Obviously after discussing my case at the MDT, they realise that my case is a priority.

Love to everyone suffering at the moment with their condition and thank you for reading.

MMP X

[AgedCrone]

I had an anterior cervical discectomy at C4/5 with a bone graft taken from my hip in 1996. I didn’t find it too bad back then, & I’m sure procedures will have improved since then.

It was just about a year before I was diagnosed with RA. Yes, it does sound horrific…..especially as they literally cut your throat to do it….but mine was really successful ….& it’s only recently I have developed osteoarthritis at the site in my neck, I was able to play tennis after the surgery …..but then good old RA put paid to that.

I hope yours is as successful as mine has been.

[MadamePetitPois in reply to AgedCrone]

Thank you for replying x

[Neonkittie17]

An-auntie-has-spinal-stenosis-but-I-confess-I-don’t-know-too-much-about-it-other-than-it’s recently-been-diagnosed-last-year-and-she’s -had/nerve-ablation.I-hope-you-can-find-someone-on-here-to-give-you-reassurance-and-the-sooner-your-op-the-sooner-your-recovery.Check-if- there-is-a-HU-forum-for/spinal-issues-too.Good-luck.💗

[Brikel]

Hi I had spinal decompression surgery in 2018 after a spinal stenosis diagnosis I was in a bad way and heading for a life in a wheelchair.

It was the best decision I have made

My surgeon was excellent and all went well

I haven’t had any further issues to date and hope it works for you

Regards Brian

[BoneyC]

I had an unstable cervical spine in 2002. Dx. RA 1971 age 6. I was told I had to have the neurosurgery as I was at high risk of tripping and becoming paralysed, or worse.

The problem was C3 had subluxed (staircase effect) onto C4 and the 'loose' vertebrae were chaffing my spinal cord. I had lots of neuro symptoms which GP's had not picked up on, following a rear shunt RTC a few months before.

Within a fortnight I underwent laminoplasty and fixation surgery C3-C6. I had it done privately as the surgeon said although it was urgent, the NHS (in 2002) had a 3 month waiting list. I couldn't take the risk my children were still at primary school so borrowed the money from inlaws. I would guesstimate there are fewer patients needing this type of elective surgery than, say, hip and knee replacements, hence why your appointment was relatively quick.

My neck was not painful, but lots of neuro signs - numbess/tingling down arms, extreme tiredness (over and above RA fatigue), shaking legs (thought it was MS). I was shocked with the diagnosis, no Rheumatologist had x-rayed my neck for years, it wasn't my main RA problem, or so I thought.

Surgery went well and although my neck is fixed, I have a little movement side to side and can still drive.

Good luck with your decision.

[helixhelix]

My sister had surgery for spinal stenosis. It was not a walk in the park as she had post surgical complications that meant she had to lie flat on her back for 6 weeks - completely flat!

However she healed and now has complete pain free movement, whereas before she was struggling to walk.

[Bessieboo1]

Hi, I had spinal decompression and fixation of L4/5 anterior and posterior approach in 2003/2005 it was the best thing that I have done. I was in absolute agony and after walking my dogs I would be in tears. I was taking so many painkillers opioid and neuropathic meds I was a total mess. The surgery has left me with nerve damage to my left foot but I reckon that was a small price to pay. I still have some problems with my back but it was well worth having the surgery. Best of luck xx

[kstinson3]

Had ACDF C3-C7 in October because of severe stenosis. I have RA and other autoimmune issues. Stopped immunosupressents before surgery and received next infusion three weeks later. It's not easy but I'm doing great now. Physical therapy is essential for optimal results. The worst part was pre-surgery anxiety. Good luck to you.

[MadamePetitPois in reply to kstinson3]

My anxiety is through the roof after reading about possible complications. Thank you for sharing x

[MadamePetitPois]

Thank you everyone for sharing your experiences. They are going to try to get at least 90% movement I understand. After reading all the possible complications it’s set my anxiety through the roof! I need to remain calm though and go through with it, as I’m sure it will be worth it in the end.

[greynot]

I had L4/5 laminectomy with nerve root decompression in 2019. (No fixation). Overnight in hospital, then home.I recovered well and quickly.

I hope it works as well for you. Xxxx

BTW I was terrified beforehand

[Runrig01]

I worked as an orthopaedic nurse for over 30yrs, nursing many patients following spinal surgery. It is not as common as hip and knee replacement, hence the shorter wait. They also wouldn’t offer it, unless they felt your symptoms would improve. It is usually done for the symptoms it causes in the legs rather than for the back pain itself. Spinal surgery has progressed enormously over the years, and recovery is much quicker now, and fewer complications occur now. If you can I’d do some gentle exercises to strengthen your muscles, especially your core muscles, as that will help with recovery afterwards. I wish you well, and am sure you will do very well. 🤗

[MadamePetitPois]

Thank you for replying and reassuring words.. Yes, my condition is severe and I have no spinal fluid at a certain point so this is worrying to them. I didn’t think I would be seen so soon though and had it in my head that I would be treated in the summer. X

[Flossy61 in reply to MadamePetitPois]

Hi I hope you've had or are near your op. I too was scared, I put it off ..but I'd got to the point I couldn't stand up straight couldn't lift anything over a kg of 2 ,couldn't walk more than a few meters before I had to stop. Every step burt, sitting burt standing burt ..I rarely wanted to be awake because it meant pain . Well this year I agreed to bilateral lumbar decompression 3 levels . I thought it would be summer then on Feb 26th got a call with a cancellation appointment for March 2nd ...so no time to back out lol...I had it done in the afternoon of 2nd went home afternoon 3rd . The incision area burt ..oh yes ..it was always recovery that worried me coz I know what I'm like...I am 2 weeks post op tomorrow, back still hurts but I'm still in recovery . After all my anxiety I am glad I've done it ..very little choice really as couldn't have carried on as I was.. All best wishes to you on your journey