Finally got my Neurosurgeon appointment!

[Kati66]

Hi all,

Well after waiting almost a year, I saw the neurosurgeons at Sheffield Royal Hallamshire. The consultant offered me some bleak options, have cervical spine surgery or my symptoms will get worse and I won’t be able to get back to how I am now! I have cervical myelopathy and spinal stenosis, with osteophytes pushing into my spinal cord. Surgery should be within the next 6-8 weeks.

I’m currently taking Leflunomide and Hydroxychloroquine and spoke to the Rheumy nurse yesterday about whether I stop them for surgery. She suggested I ask at the pre-op assessment which is next week.

I’m feeling quite anxious as the risks are a bit scary but I don’t want to end up in a wheelchair from the spinal problems . The journey to Sheffield is also over two hours so it means more trips and my hubby struggles with the drive. When I have to operation, he is going to stay over in a hotel, which will help.

Has anyone else had to stop these meds when having Surgery?

Thanks

Kati xxx

[HeadInASpin]

I can't help you with the meds question. But I can wish you the very best of luck. xx

[Kati66 in reply to HeadInASpin]

Thank you 😊

[medway-lady]

I don’t know I have no experience of such a big operation. I’ve only had a much smaller one on my foot. I just wanted to say I hope all goes well and I hope your feeling a bit less shocked now.Good luck.

[Kati66 in reply to medway-lady]

Thank you 😊. Yes, I just want it done so I can start making plans again. We have put off going away while waiting for my neck to be sorted. I hope to go to Japan next year with my son 🤞🏻🤞🏻😁😁. Xx

[medway-lady in reply to Kati66]

Fingers crossed my husband is in a similar situation . I don't know about our holiday as all paid for now but my son and wife can change names and go. Japan sounds great we are hopeful Cypress is still ok in May but it's far from certain. I hate the plans in the air and have suggested let's just say no and go in October. I've bought the beach stuff so must use surely !lol xx

[helenlw7]

I was due to have a knee replacement last year (long story) but in my pre op the surgeon said to stop the methotrexate 2 weeks before the op date, and hydroxychloroquine the day before, and then I couldn’t restart the mtx until my wound was healed.

Good luck with your surgery. I too have spinal stenosis.

[Kati66 in reply to helenlw7]

It seems the doctors vary in whether we should stop our RA meds. I will ask the consultant’s secretary and see if she can find out. Spinal stenosis is horrid isn’t it xxx

[tinlizzie]

Hi Kati, it is a big operation but sounds quite urgent, so good not too long to wait. I have had three c spine neurosurgeries, (fusion from C1 to T1 now) which were also urgent due to instability from RA. They all went well luckily and I'm very grateful to the neurosurgeon and team.I was on biologics(Enbrel) and methotrexate and had to stop two weeks before surgery. I was also on oral prednisolone for the second and third op, so this was doubled to help me through the shock of surgery.

Yes, ask at the pre op assessment re the meds and write down any questions, maybe give your rheumy a call via their Secretary to get their opinion too as surgeons aren't always the most knowledgeable about our drugs.

Lots of luck and hope all goes well x

[Kati66 in reply to tinlizzie]

Hi tinlizzie

This will be my second cervical spine surgery as I had C4/5 and C5/7 fused four years ago. I’m going to contact the surgeon’s secretary about stopping meds as I called my Rheummy nurse and she said ask the neurosurgeon. I really hope this op helps as the symptoms are worse this time. I will now have a matching scar on the other side of my neck! 🙄 I recovered well from the last surgery but was diagnosed with RA 1.5 years ago, so that’s in the mix now too.

Thanks for the reply, Kati xxx

[springcross]

I can't help Kati66 but I wish you all the best for the surgery and the recovery. x

[Kati66 in reply to springcross]

😊 thank you

[Madmusiclover]

You must check with rheumatology about coming off drugs.

[BoneyC]

I have been told by various surgeons over the last 22 years to stop MTX before surgery.

Also, I had subluxation of C3 onto C4 with myelopathy and spinal stenosis back in 2002. I was told then I was an urgent case but would have to wait 3 months on the NHS. Heaven knows how long the wait would be now.

I had a laminoplasty and fixation C3-C6 done privately, paid for by my in laws. I felt held to ransom and had 2 young children at primary school and couldn't take further risks.

Hope you get your surgery soon.

[Kati66 in reply to BoneyC]

It’s not nice having to wait, knowing that this condition can potentially paralyse you! 😱😱 the neurologist referred me in April 2023 but the letter got lost! So they only began processing me in August! Fingers crossed the op comes soon 🤞🏻🤞🏻xxx

[BoneyC in reply to Kati66]

I agree. I was told the same, one trip and I could have been paralysed or worse, but if you cross my palm with silver (£8,500) then I will do your neurosurgery next week!

One thing hopefully in your favour might be there are less patients waiting for neurosurgery like yours than for hip and knee replacements. Good luck!

[dickfend]

Hi Kati

I have had RA and OA for the last 50 + years and have had a number of operations. The latest operation I had last October was for Spinal Stenosis to my lower back. It has been very successful although I am still recovering to regain my walking ability and unfortunately I ended up with a DVT. Because of this DVT I have been taken off of one of my anti inflammatories which hasn’t helped my Arthritis. However overall it has been a great success as the surgeon said if I hadn’t had it done I would have lost the power to walk again. I wish you all the best and a speedy recovery.

[Doraflora]

hi Kati66. I’ve just read the first paragraph of your bio and I thought it was my husband I was reading about!

The neurosurgeons do give a bleak picture, but I guess they paint the worst possible scenario.

Hope your surgery has gone smoothly. Please do keep us updated on here.