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
Surgery on the spine with CLL: Wondering if... - CLL Support
Surgery on the spine with CLL
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
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.
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
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
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?
Same experience here in the U.S. I needed half my liver resected for drug resistant aspergilloma causing pain and threatening organ function. On Ibrutinib for my CLL, I discussed my immunocompromised status with the surgeon who replied "I'm immunocompromised too, I'm on immunosuppressive drugs for my renal transplant: We can do this". With input from my CLL team at Ohio State James Cancer Center, I stopped the BTK inhibitor for a week and had the surgery. Re-started ibrutinib 1 week post-op. No complications. That was 12 years ago. Still on BTKs, lucky for me, but surgery was not considered an absolute contraindication for someone in an immnocompromised state.
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.
Thanks olyocl - whereabouts did you have your surgery. I live in Loughton, Essex but the spinal surgeon works out of Canterbury NHS hospital in Kent
Hello pocketdog, it was a neurosurgeon at Queen Elizabeth hospital in Glasgow that did my operation. The hospital is about 60 miles from where I live in South Ayrshire. Scotland. Many years ago I was in Loughton visiting a couple we knew and had moved there from Theydon Bois.
Best wishes, Olive
Of course consulting with your doctors is priority. I would mention this thought, whatever your immunity level is now, your chances are going to be less good for improved immunity in the future. This is most likely, and only simplistic reasoning as CLL is an immune system cancer.
With all else being equal, if they'll clear it and you want it, waiting seems to be counterproductive.
Ho Pocketdog, I too have spinal problems and have had injections etc. I’m not considering surgery but have had radio frequency ablation. However I am facing bilateral knee replacements and all the same concerns exist for that surgery as well.
My hematologist will write a letter saying that I need a special kind of blood that has gone through special processing the infection potential will be treated preventatively as possible. The risk remains though IVIG also may be used to help prevent infection Bone surgery can be managed but your drs need to communicate and on top of their game
Sophie
had spine surgery after compression fracture of four vertebrae (skiing). Stopped taking Acalabrutinib a week before and after surgery with no problems. Good luck.
I had a widening of the vertebrae that gives the nerve more room and clean up of bone spurs, but nothing effecting the discs. I was in watch and wait. No problem. However, your hematology team knows your state with CLL best.
Hi, I have had 2 back operations, one before diagnosis in October 2020, although I did have it then, the second in April .2021 after diagnosis December 2020 on watch and wait.
Both had no additional issues with infection and the second for the prolapsed disc where I had a Fusion of L5 S1 and a spur removed.
My consultant sent a letter to the surgeon confirming it was ok to go ahead, they took extra precautions as will you but I never had any issues. In fact I was signed off by the surgeon and the nurse after 2 weeks, followed by 6 months of physio.
Now back at the gym doing all I did before, although on Acalabrutinib from January 2022
Good luck
Will
hi there, I am 4 months out from spinal surgery, had a discectomy and a bone graft plus two cages inserted and a fusion and the relief is amazing!! The surgeon took a lot of care around safety re infection and bleeding. I am also on Ibrutinib so even more risky.
That said I decided to go ahead out of desperation and have no regrets. There was a fair bit of post surgery pain but all good now. Hope that helps you. Good luck. Back pain sucks !!
Regards Vivienne
Hi there. I have CLL and had chemo about 10 years ago. Shortly after my diagnosis I had spinal fusion surgery for chronic back pain. There were no issues. The Orthopaedic surgeon was happy to proceed and the operation went well. I've also had transitional cell carcinoma (TCC) in my right kidney which required a nephroureterectomy (removal of kidney, ureter and neck of bladder). I hope you get your surgery. Best wishes.
Last year I had a carotid endarterectomy done! I was taking Clopidogrel and Zanubrutinib. My hematologist requested me to stop taking Zanubrutinib five days before the surgery and two weeks after the surgery. Despite a few bleeding complications during surgery, all went well in the end. Pausing the Zanubrutinib had no side effects on my CLL . My blood counts remaind good, as did my health!
Hope this helps.
Ellen 🌷
Slightly off topic; My wife’s rheumatologist prescribed Kevzara for her PMR & she was able to successfully taper & finally stop prednisone. Not sure if it’s an option for you, but it helped her.
Hi, I’m in the UK. I was diagnosed in 2017, had 6 months of Rituximab infusions in 2018, and was on the Flair trial taking Ibrutinib from 2018 until earlier this year. I started having back pain (bulging disc) in 2019. I had an epidural in 2019 which worked well, but the pain (sciatica down my left leg) returned in 2021. I had 2 laminectomies (privately) in 2022, neither of which worked ☹️. There was no question of not doing them because of my CLL. I then had another epidural which didn’t work, but last year my GP prescribed Duloxetine which has really helped. I can now do most things I used to do including (slow!) hockey and spinning classes.
I tried amitriptaline and gapapentin, neither of which worked, before I tried duloxetine.
Yes, I had two cervical spine surgeries and they are actually the doctors who told me I had CLL. I had severe stenosis and anyway I had to get the surgery twice, but I had no problems at all with it.
Hi Pocketdog
I have a question that I believe you can answer. I have a great grandson about 4 months and living in England. He has a kidney problem and needs a scan (i think its ultrasound but not sure). He is waiting in who knows how long a line. How might my granddaughter arrange imaging that she pays for?
Thanks to an anxious ggdad.
Paul
Hi, I had back surgery over 2 years ago. I had 5 bulging discs and was getting injections and nerve ablations for 5 years. I searched far and wide for a good surgeon. He was not that concerned with my CLL. I was not on treatment and my counts were not horribly high. I had to be off asprin for a week prior. I would think you need to be off prednisone. They may give you a weeks worth post op. I had a micro decompression of the nerves, no hardware. One reason why I went with this doctor. And it was done on an out pt. basis in day surgery. My doc said I needed it in order to save the nerves. Was up walking right away as prescibed and been pain free for 2+ years. Post op was given antibiotics as well as during surgery. Risk of infection was minimal. Had to have a family member come stay with me. Best of luck.
Cataract surgery and CLL
Diagnosed with CLL at 27 years old. 
Getting 2nd opinion for CLL
Life with cll. Another new concern.
Itching rash with cll 
