Surgery on the spine with CLL

[Pocketdog]

Wondering if anyone has had spinal surgery (for stenosis and 3 bulging discs). I was diagnosed with CLL in February 2023 and am currently on watch and wait. I also had PMR at the time and was, and still am, on prednisone. For the past year I have tried to establish what the pain in my hips was. After x-rays, physio and increased pred dosage, and being told I couldn't be referred for an NHS MRI scan I paid for one myself, which revealed the spinal stenosis and bulging discs. I had 2 spinal nerve blocks which have not worked. Am currently on 7 mg of pred tapering down from 15. The spinal surgeon said he would operate on the spine with no hesitation but is reluctant with the CLL due to risk of infection, blood loss, leading to anemia and compromised immune system. He has written to the hematology team for their opinion . Just wondered if anyone on the forum had the same problem? Looking for some advice before the surgeon speaks to the hematology team. Thanks

[Newdawn Administrator]

Sorry to hear of your issue with spinal stenosis Pocketdog which unfortunately I share. I don’t want to go into too much private detail as you haven’t locked your post to the community but I’m afraid I haven’t been able to get a spinal surgeon to operate on my back due to my immune compromisation and the issues you’ve outlined.

It’s just been a matter of trying to control the pain because the epidural injections didn’t work for me either. A TENS machine can help and it’s important to keep mobile and find a regime of pain relief that assists.

I see that you have PMR which must be an added management complication. I noticed on the PMR site that you mention both PMR and CLL as being auto-immune conditions. CLL isn’t actually an auto-immune condition in itself but can lead to auto immune complications. A small number of people with chronic lymphocytic leukaemia may develop an immune system problem that causes the disease fighting cells of the immune system to mistakenly attack the red blood cells (autoimmune haemolytic anaemia) or the platelets (autoimmune thrombocytopenia).

Best wishes,

Newdawn

[Pocketdog in reply to Newdawn]

Thanks Newdawn, I try keeping mobile with yoga, exercise classes and walking but with the tapering down the pred I find I'm in more pain so it's more difficult to exercise. Have just started on 5 mg of amitriptyline per night (at my suggestion to the GP) to see if this will help so I can come off the pred totally but it's a bit of a catch 22 situation and a wait and see what happens when I do get off them, as when I was on 15 mg - which I have been up and down this past year - it definitely seems to mask the hip pain. I'm just trying to sort out all the options until the surgeon comes back with an answer and find the right pain management regime if I can't have surgery.

[Newdawn Administrator in reply to Pocketdog]

I totally empathise with your ‘management’ dilemma Pocketdog. With the PMR you’ll need the pred but being an immune suppressant, it’s important to monitor its impact on your CLL. I’ve tried the Amitriptyline but eventually took myself off it because its wasn’t giving me the added relief and it dried my mouth so badly.

The added issue is the BTK’s I need to control my CLL do appear to adversely impact on my joints and muscles but in truth I’ve had to accept this as vital trade off.

I’m afraid any additional issues with CLL are challenging! 🤨

Hope you can find what suits you. Sounds like you’re doing well to keep as fit as you can.

Newdawn

[lankisterguy Volunteer]

Hi Pocketdog,

I was diagnosed in 2008, had a laminectomy- L2-L5- in 2018, had spinal fusion L4-L5 in 2019, and had a Spinal Cord Stimulator nevrohfx.com/why-hfx/how-hf... installed just 4 weeks ago. I was in treatment with venetoclax / Venclexta for the first 2 surgeries and pirtobrutinib / Japirka for the recent one.

I had to pause pirtobrutinib for 7 days before and after for bleeding risk, did not pause venetoclax for the first 2.

Len

[Pocketdog in reply to lankisterguy]

Well they certainly aren't as reticent to do surgery in the US as they are here! Thanks for that. I'm kind of hoping that as I'm not on any treatment for the CLL they may consider the surgery sooner rather than later?

[olyocl]

Last year I had surgery for Spinal Stenosis, and was discharged 48 hour afterwards. I have been on Ibrutinib since July 2020, had to stop taking it for 1 week before and 1 week after. Because I had to wait so long to have surgery was told that it is likely that there could still be complications, ham in constant pain. Hope all goes well for you.