Massive pain flare after nerve block

[Violet M]

How are you doing now, Neil? Hope your flareup has subsided.

Matt, you bring up a point that I have often wondered about and that is why do the docs continue to do so many nerve blocks when so many of the reports we read on the forum are negative. I remember when I first came on the PNE forums that the Houston team was reporting that out of about 150 nerve blocks performed so far, none had been permanently successful. It's interesting your doc is reporting muh higher success rates.

[Budgie]

19th June I am scheduled for bilateral Alcock block at dr. Aszmann

Good luck with that Matt, hopefully some answers at last.

Also wondering how you are now budgie? I take duloxetine and do get on well with it. I think this above anything else I have tried serves me best. It's kind of a two for one in that the antidepressant side of the drug is undoubtedly useful too but any side effects are negligible for me anyway. I'll face any with drawl as and when I guess. I also take tramadol with the duloxetine and keep getting them prescribed??
take care,
Helen

Hi Helen and Flyer28.

To give you an update following my nerve ablation done on 10th May; it settled my pelvic muscles and these have been almost pain free for weeks now. The consultant said this would probably happen. He also told me to expect a flare up in the nerve pain for 7-10 days. Over a month later and I am still really suffering with a flare up of the urethral/glans pain/soreness/burning. It also seems to have increased the urethral irritation. I am constantly icing the area to try and get some relief.
I still haven't started the Duloxetine due to not being able to get off the Tramadol yet. This is partly because of the side effects and partly due to the increase in pain I've been getting. I got down to 50mg per day of Tramadol but then things flared even more so I went back on to 200mg SR per day.Its difficult to know whether its doing anything until you try and come off it and then you realise it probably is, even if it doesn't seem to take much pain away. You sometimes think it can't get any worse and then you remove a med...and it does!

So, not good at the moment. In fact, its pretty horrible. I'd have the muscle pain back tomorrow as it usually gets rid of the horrible nerve pain! Strange but true. I wish I could understand why the nerve pain reduces when the muscle pain increases.

I'm off on hols on Monday and am petrified that it is just going to stay as bad as it is now. Have got a 2 hour flight plus a car drive which is going to be a nightmare if its like this.

[Violet M]

Neil, I'm really sorry things are still flared up for you. It's scary to be sure but I think you are smart to take as much pain medication as you need and keeping icing like you are. Maybe they could add something like Lyrica or Neurontin to help with the burning.

[helenlegs 11]

Sorry about all you are going through Neil. . . . .I do hope that you can get things under control enough to really enjoy your hols.
Take care,
Helen

[Budgie]

Hi all

I thought I'd give you an update on things. Started to get an even worse flare just before the holiday so took the liquid morphine. Had an amazing result and the pain went away 90% all the time we were away. I actually felt normal for the first time in I don;t know how long. As soon as I came home, the soreness and stinging etc in the urethra started to increase again. I think this is to do with wearing trousers again, which has aggravated things - on holiday I only wore shorts. The only other difference was my GP put me on 100mg tramadol instead of 200mg (this was to wean me off it so I could start the duloxetine). That was from the day after we returned home so ties in with the increase of pain as well.

I had a meeting with my consultant on Tuesday and explained what had happened. I also told him that since the nerve block the muscles in the pelvic floor have been pretty good. He said that normally the nerve pain is exacerbated when the muscles tighten up so what I'm getting is the inverse of what he would expect. He also couldn;t explain why the morphine worked whilst away and then hasn't since.

He has put me on time released morphine tablets instead of the liquid and said that the 20mg duloxetine wouldn't be doing anything so has increased me to 40mg and then 60mg progressively. I'm on 40mg at the moment but am having no joy with it yet. I'm still on 2800mg of gabapentin per day, like I've been for the last 8 years.

So, I'm still suffering. He did say that usually the pain flare up lasts between 7 and 10 days after the injections but occasionally they have had people who flared up for longer. The worst they had was a woman who had 6 months but then all of a sudden it settled and she didn't need another injection for 3 years. So there is always hope I guess. Saying that, I'm going out of my mind with the pain at the moment. I can't think of a worst place to have constant soreness and irritation than in the urethra and on the glans penis. Its horrible and everything that requires movement is an effort.

I also seem to be getting more stinging after urinating that I did before. Don;t know whether that is something to do with the way morphine makes the urine acidic.

[Budgie]

All

I meant to ask in my last reply; I'm currently seeing a pain management consultant but is there anyone else that it would be worth getting this urethral soreness/stinging checked out with e.g. neurologist? If so, can anyone recommend one?

Thanks

[Violet M]

Neil, I've never had much luck with neurologists but it depends on whether they have a particular interest in PN -- for instance Dr. Sheldon Jordan in Santa Monica is a neurologist.

Have you ever tried tricyclic antidepressants for the urethral symptoms? Something like elavil? You could also try premjact topical spray just for temporary relief of symptoms.

Sorry to hear your pain returned and I hope things will settle down for you again soon.

Violet

[Budgie]

Thanks Violet

Yes, I have tried tricyclic anti depressants in the past with little improvement. I'm now on the full dose (60mg) of duloxetine (I know thats an anti-depressant but not sure if its a tricyclic one) which does seem to be taking the edge off it at the moment. However, after seeing an improvement in the muscle tightness and pain in the pelvic floor since the last injection, this week I've started to experience more pain from that again. So I'm not sure whether its the duloxetine which is helping the nerve pain or the muscles tightening which are stopping it!

Thanks for the info re neurologists. I'm in the UK though so I'd need a name of someone here. I just wondered whether a nerve conductivity test could be done to maybe determine where the pain is originating.

Sometimes I wish we could just 'unzip' our bodies and have a look inside to fix the problems. It would be so much easier!

Neil

[helenlegs 11]

I don't know of anyone who undertakes any pelvic nerve tests like that here Neil. Maybe it could be done but there isn't enough knowledge (or interest) about pelvic nerves I doubt. I'm not sure how accurate these tests are either. I really think that a knowledgeable pelvic clinician who know the nerves that serve it,could make a good clinical examination to determine and identify problems.
Do the team in Nantes do any nerve test or just use a clinical examination? I forget their procedure, although I have been told that patients are examined by 3 separate doctors when being considered for decompression surgery I'm not sure if any nerve test is part of it now.
What does your pain consultant say is a next step?
The link cora has recently posted is interesting btw.. . . . oh see you have just responded to it
Take care,
Helen

[Budgie]

Hi Helen

I think the Nantes team can do some nerve conductivity tests. I also think my pain management guy has a team of people and one of those does it too. However, he's not mentioned that to me and I forgot to ask when I saw him a few weeks ago. I guess though that he is just interested in easing the pain rather than trying to find the root cause.

He's put me on the time released morphine and also on the 60mg of duloxetine per day. I'm also still taking the 2800mg of gabapentin each day. If this concoction doesn't work then the next step is to have a neuromodulator (?) inserted and wired into the nerves. That would have to be done on the NHS though as BUPA won't pay for it. I'm not convinced I want to go down that road to be honest. I think I'd rather go to Nantes first before that is tried. Oh, he's also referred me to a CBT guy as well. I've said I'll give it a go although I'm not convinced that it will help but will, go in with an open mind. Of course, I need to see whether BUPA will pay for that first!

Was the link from Cora the one about Buprenorphine? I never had any luck with that at all. Did nothing for my nerve pain and caused really bad muscle spasms in the pelvic floor.

How are you doing at the moment? Is the duloxetine still working? How long did that take to start working for you? I've been on the 60mg dose for a week and a half now but it doesn't seem to be doing a great deal yet.

Take care

Neil