Nerve denervation didn't work for me, what now??

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Nerve denervation didn't work for me, what now??

Postby Planet of my own! » Wed Aug 20, 2014 8:47 am

Hi I have previously had lumbar facet injections that seemed a success even though only lasted about a year.
Then pain specialist suggested burning the nerves in my lower back, I agreed as willing to try anything. But sadly it did not work and I'm in as much pain as before if not worse.
My mobility is very limited because of pain and fatigue, especially in lower body. But I don't know where to turn next. I have an appointment tomorrow to see my pain specialist again but imagine he is going to say he has done all he can for me :cry:

I try all I can to balance my day with movement, working etc with rest/sleeping(bit of a problem there) when I lay down in the day I go so deep into sleep my husband can't wake me up. I am like a zombie once I've come to, I feel so disorientated its terrible.

But as for my mobility now I'm not sure if I've just got to except this is me....
Any ideas friends??
Deb xx
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Re: Nerve denervation didn't work for me, what now??

Postby stephdawn » Wed Aug 20, 2014 7:04 pm

Oh huni, I'm so sorry to hear what you are going through at the moment. I haven't had the treatment that you are talking about, but I'm going through the pain, fatigue and mobility problems that you are. I've only seen my pain specialist once and I'm going to see the physio on Friday for the first time. Just take care and I'm alway's here if you ever need a chat. :goodluck2:
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Re: Nerve denervation didn't work for me, what now??

Postby lolabolla » Wed Aug 20, 2014 8:21 pm

Hi love,

So sad to hear that you are in so much pain, I can totally empathise with you.

I too have the facet joint injections every 4 months for degenerative disc disease, my most recent appointment was last month.

I usually get about a month or so pain of relief after the injection but this time it just hasn't touched it and I am in severe pain which is getting worse as the weeks go by.

There is no way on earth that I will even consider the back surgery that has been suggested which only has a 50% success rate.

Do you mind me asking what the 'nerve burning' procedure entails' as I would like to ask my GP to consider referring me for the treatment.

Take care

Lola xx
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Re: Nerve denervation didn't work for me, what now??

Postby Planet of my own! » Fri Aug 22, 2014 7:39 am

Hi all, I've been back to the pain clinic and feel that I have been really listened to.

In answer to Lola about denervation, it was medial branch block treatment, where they first deaden nerves, mine were L2-L5, in a test procedure. This lasts only around 24 hours where your nerves are deadened, you then need to keep a diary and agravate the pain each hour I think, if I remember rightly.
Then if this has some success they do the next procedure of actually burning the nerves at high frequency. I have read and was told this can be very successful and last up to 3 years, just unfortunately it wasn't right for me.
But that's not to say it wound not work for you. I have read some good success stories. It's worth asking, the only thing I would say is ask about recovery time with your body having fibro. As my body takes longer than usual to recover from things, like many of us I suspect. When I had an endoscopy I was out of it for a week, but should have been able to work after! But everyone is so different my experience is just one.

My specialist has now said because I have a combination of fibro, cfs and ME (never mentioned ME before) and I seem to be at a level of the condition that my body is in this constant pain and flare ups it will take time, even years but I can still hopefully get to a better level.
He is reducing my RLS medication (clonazapam ) because of extreme sleeping during the day, where I can't wake up, or be woken without real difficulty. So I'm up for trying that. I have now been given ropinerole, a very low dose, to see if this helps with day time symptoms I. My legs. Then I may be able to take these for night time. He said Clonazepan is extremely addictive and best to try to wean off these.
I'm on 2 per night for the last few yeas, but they have helped my legs a lot.
I have read good reports of ropinerole for restless legs so let's hope they do the trick, I can't stand the thought of that feeling every night again. Does anyone take ropinerole for RLS? And has it helped at all?

I actually came out of the appointment feeling positive at excepting fibro for how it effects me, with the focus on being me and not letting fibro take over as I feel it has done for a long time, pain is so damn hard to lock away in your brain, but I am determined to give it a real shot. I am me coping with fibro, not fibro taking over me.

So if I need to use a stick and wheelchair I will, embrace life not shy away embarrassed because of using aids. That's in the past for me now.

I do apologise I am going on and on but it really helps to put this down and feel others understand.
I have tried diaries, that can help but here I feel someone is listening.

Thanks everyone xxx
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