Severe Spinal Stenosis FBSS

Davewm1

I wonder if anyone can give me some advice?

In 2018 I had a Laminectomy Operation to relieve pressure on my lower back, L3/4 and 5. The operation was, initially a success but after about 5/6 months the pain returned. The consultant arranged for another MRI Scan which showed that scar tissue had formed around the operation site.

I was then diagnosed with Chronic Heart Disease and underwent a Triple Bypass and Mitral Valve Repair. (I’ve also now been diagnosed with Heart Failure)

When I next saw the back Consultant he said there was no point in further back surgery as more new scar tissue would form each time and with the diagnosis of Heart Problems it wouldn’t be wise to undertake further back surgery. He arranged for me on two separate occasions over 6 months to have Facet Joint Injections. Unfortunately they didn’t work.

I was then told that the Pain/Spinal MDT had discussed my case and suggested that I be referred to the Pain Clinic to discuss the possibility of Neuromodulation. (Spinal Cord Stimulation).

 I saw A doctor who went through the procedure of Neuromodulation with me. He gave me a very fulsome explanation as to what the procedure entailed and how it was performed. As I was still waiting for my Heart Surgery he said this would be left on file to be discussed at a later date. 

I saw the Pain Consultant in 2019 who said I would NOT benefit from Neuromodulation!

In March 2021 I was hospitalised after collapsing at home and was diagnosed with Heart Failure. Obviously this very upsetting episode somewhat diverted my attention away from my Spinal problems. However I’m now learning to live with that and so I asked the GP to re-refer me to the Pain Clinic as my back pain was worsening and getting very debilitating.

In December 2021 I was seen by a different Pain Consultant, who had been drafted in from St Bart’s to help with the waiting lists. This was a very positive appointment and the doctor was very sympathetic to my multiple problems. He then talked to me about Neuromodulation and said I would need another MRI Scan to decide on future potential treatment. (He explained that although it was a course of action he would have potentially recommended (had I have been under his direct care) the decision as to what action would be taken would be left to the Ipswich Team).

In March this year I had an MRI Scan and was given a copy of the report a short time afterwards. The report stated that I had Severe Spinal Stenosis which was worse that before the Laminectomy. I then waited for the follow up appointment which took place with original Consultant in May 2022.

 Although as previously detailed I had already had 2 x (unsuccessful) Nerve Root Block procedures the Consultant offered the same procedure again. I was also prescribed Pregabalin for pain relief. No mention was made with regard to the original discussions of the potential use of Neuromodulation?

 I had to stop the Pregabalin due to side effects. 6weeks ago I had 6 Facet Joint Injections which unfortunately have once again failed.

I went for a follow up appointment and the Consultant said there was nothing else he could offer and I’d have to live with the pain.

I’m grateful if you’ve managed to read to this point!

My questions are:- 

1) Can I ask to be referred to the second Consultant who said Neuromodulation WOULD be an option?

2) Has anyone had this procedure and did it work?

Thank you, kind regards 

David

 

Oxonlady

Hi @Davewm1, I fully sympathise. I've had five operations on my spine, including lumbar fusion in L4-L5. It was intended to correct a spondylolisthesis but it failed. By the time the neurosurgeons operated a second time to correct their mistakes, my spine had healed in the wrong place.
I had horrendous pain for a while, now severe when I stand or sit for too long. However, I have developed very severe pain in both shoulders and right hip as a result of being on steroids for 18 years. 
Please be very careful if it is steroid injections you've been having. Steroids can cause more damage to bones and joints. 

Pregabalin gave me awful side effects and didn't do much for the pain, so I stopped taking it within a few days. 

Have not tried a neurostimulator and I can't have any more surgery as the doctors say I would not survive further anaesthesia. 
I wish I could suggest something that would help your pain. All I'm taking currently are Celecoxib and Nefopam to take the edge off the pain but they would not work for everyone. 

Sorry I can't offer practical help but I do understand what you are going through. 
Maybe you could ask your GP for a referral to Barts? Good luck. 

Davewm1

Thank you so much for your very kind reply. I’m sorry to also hear of your ongoing problems of severe pain.

I think I would, reluctantly, accept the outcome if it weren’t for the conflicting views with regards to neurostimulation devices.

As I was awake again in the early hours I’ve sent an email to PAL’S to ask for either a second opinion from my local hospital or referral to St Bart’s. 

Thanks again for reply.

kind regards 
David

Oxonlady

Hi @Davewm1, thank you for your reply.
It's a wise decision to request a second opinion. 
You may have received conflicting information about neurostimulation, because like everything else, it may have benefited some people but not others. Also, it may be difficult to predict the outcome for individual patients. It's a tough call. Still worth pursuing a second opinion. Just a thought, if you find benefit from a TENS machine, it may be that neurostimulation works for you. I can't tolerate a TENS machine, the vibration just gives me a headache!