Radiofrequency denervation info, please

[LupieLady1]

Hi everyone. I'm hoping to locate someone who has had a radiofrequency denervation procedure to the spine. Was it successful in relieving pain and what effects did it have on you with loss of sensation etc? Was it a good move to have it done or do you regret it? If anyone can help I'll be very grateful. Thanks.

[Krawlins]

Hi LupieLady1, I'm following your post as I too am currently awaiting this procedure as well as more steroid injections. I had a dreadful slipped disc which took weeks for anyone to diagnose, failed visits to Drs, sent home at A&E first visit. Called 999 when I could no longer stand it, couldn't get out of bed, couldn't eat and couldn't go for a wee. I had to insist I was kept in for further investigation and they let me. My problem then was that the only consultant/spinal surgeon was on holiday, it was Easter! I was in for a week before he came back, I was on morphine and had a catheter. Eventually I had MRI, after it a dr visited and her words were that a bone had moved in my spine!! Later this was explained by consultant when he returned to be a very severe slipped disc which needed emergency surgery, he said he was going to have to cancel his clinic and do it the very next day!! A few days prior to that I was told I could go home and wait for an appt at consultants clinic or just go home for the weekend?? I couldn't make these other Drs understand that I couldn't move or walk, I was locked in a fetal position for around 3 weeks. Consequently I have permanent damage from the too long wait for the so called emergency operation that I should have had about two weeks before I actually did. For a year I was great. I'd lost a stone whilst so ill, my muscles had wasted, I was very weak. A year later it all changed suddenly that was four years ago and now I have untold problems all related to it. The disc and others are again bulging. I've osteoporosis and osteoarthritis in spine and facet joints, sacroilliitis, chronic sciatica which often becomes acute. For 24/7 I have twitching in my leg, numb spots, loss of sensation, vibrations in my leg and foot. I'm now under pain management who tried Cream and tablets, nothing worked. I'm in constant pain, joints and muscles all tender. I've had three procedures of injections, can't have cortisone anymore as that made me very ill and caused a diagnosis of type 2 diabetes, it took weeks till it settled down and injections only relieved the pain for a very short time, maybe couple of weeks. I then had further injections which were diagnostic and why I'm awaiting denervation, everyone seems to indicate this will do the trick, including the rheumy who incidentally will not see me anymore, I've been written off as they don't think any of my spine/hip/muscle pain has any link to auto immunity, I still believe it does but until I get another obvious flair i.e. rash and hair loss (had this about 3 yrs ago) I can't argue even tho every blood test shows raised inflammation!

Sorry this is so long, have you a date for your procedure, please let me know how it goes and I will too if I'm first (unlikely, I've been waiting 3 months for appt which is a day stay). What is the reason behind you also querying this procedure? Best wishes, Kay x

[Barnclown]

Hello LupieLady

Yes, i'm 63, have infant onset lsystemic lupus and Hypermobile Ehlers Danlos syndrome + other comorbdities. And i've had a series of bilateral spinal facet joint denervations over the years from my Pain Consultant...all my cervical, lumbar & sacral spine joints were done, at least 2 denervations of them all several times over from the late 1990s till about 7 years ago

I have found these denervations vvvvv effective at numbing certain crucial aspects of my chronic spine pain, but i did have to work hard at rehab, and self help techniques ongoing too. And i find my daily oral combined therapy lupus meds are also key to minimising my spine-related chronic pain

Here is a link to a post on the HealthUnlocked Pain Concern forum where i go into much much more detail re my experience of these denervations:

healthunlocked.com/painconc...

Over the past 6 years, quite a few people have posted about spinal joint denervations on the Pain Concern Forum, but there have been vvvv few posts here on this subject

Wishing you every best wish

🍀🍀🍀🍀 coco

[LupieLady1 in reply to Barnclown]

Hello Kay and Coco, thanks for responding to my post. My apologies for taking so long to reply. I have been trying to find more information and, particularly to finding someone who has had the procedure. It's the after-effects that are worrying me. I was told (by a very good lupus doctor) that once the nerve ends have been burned that's it, the end of the line and although the pain will go away, the loss of sensation in my back could cause problems e.g. my spine could snap and I wouldn't know it was happening with not having the warning signal of the pain. I know someone who had the procedure on her lower leg. She says the pain has gone, however, that part of her leg has no sensation. This doesn't prevent her doing anything as she has feeling in the rest of her leg. There is a big difference in part of a leg and the spine. I'm still unsure whether or not to have the procedure. I desperately need to get rid of (or, at least, reduce) the pain in my back but I'm thinking it may be too high a price to pay. I am hoping to have more precise information and be nearer to making my decision when I see my main consultant during this coming week. In the meantime I will visit the HealthUnlocked Pain Concern forum (thank you for recommending this, Coco) and check out the information there.

Best wishes to you Both, hope you have a good reduced-pain week. Lupie Lady x

[Barnclown in reply to LupieLady1]

Good plan!

If you've had a chance to click on the link i've given you above, you'll find that i have described details of the spinal numbness i've experienced after having had several of these procedures done to my cervical, lumbar & sacral spine...hope the details i give there help you. I remain still vvvvvv happy with the effects of All the bilateral spinal facet joint denervations i've had since 1998, but everyone is different.

My lupus is infant onset. I am now 63. I began to undergo these denervations in 1998 after many decades of severe chronic spine pain related to spondylosis due to both a childhood fall from height onto head & ehlers danlos hypermobility. The last denervations were about 8 years ago.

Aplogies for repeating myself...am old & forgetful

Take care 🍀🍀🍀🍀 coco

[LupieLady1]

Thank you, Coco. I've read your posts - given me food for thought!

Have a good weekend. x

[Barnclown in reply to LupieLady1]

👍👍👍👍🍀😘🍀😘