Chronic pain and getting the correct help from a pain consultant

[duckduckmouse]

Hi everyone,

I have a meeting (finally) next week with pain consultant following trigger point and steroid injections in July.

I subsequently had more local anaesthetic injections in August but I was actually over dosed by the private pain specialist and had a seizure lasting more then 90 mins. He had to use a series of sedatives and a tri lipid infusion to get me to come around. I was so frightened. Had to go to the theatre with a crash team.

After that I went and had more injections of local anaesthetic but they didn't work.

I want a more permanent solution instead of taking medication which is currently gabapentin max dose and amatryptaline 75mg with codeine or Tramadol which I do not take as I can't tolerate the side effects.

I want to have a nerve block or a denervation or anything more permanent so I can expand my family.

My sole motivation to do this is in order to have another baby but my pathway is obstructed by these medications and I'm not sure where to turn.

Any advice greatly appreciated

[Fluffybrain]

Sounds frightening. What is the source of your pain Duckduck?

[heebiejeebie]

It depends on your definition of correct help.

'What I have decided I want' is not necessarily the same as 'what the trained expert in pain management thinks is mostly likely to be tolerable and successful'.

I would suggest that you take
a summary of significant events - one page
A summary of main symptoms - one page
Previous treatments and main effects and side effects - one page
Goals in rough order of importance - half a page

[duckduckmouse]

Morning fluffy, I had a nephrostomy that was left in for a long time and became totally encrusted. It was yanked out of my back. If was in for too long and it's damaged my nerves around my kidney area on my back.

Heebie, thank you for that advice. I will get some documents together. I've already got notes on what to discuss at the meeting but a list of side effects isn't something I had thought of before.

[SweetieBaby]

I had a denervation that didn't go right and I've ended up with a nerve root injury. Now waiting to have a spinal cord stimulator implanted.

Denervation isn't necessarily permanent either. It was as explained to me that the nerve recovers eventually and the nerve pain may come back.

Have you discussed having a stimulator implanted? It is a big step but may be helpful for you.

[duckduckmouse]

Hi Sweetie thank you for writing to me. You poor poor thing.

I don't know what treatment I will be suitable but I know they have written to me to say that if I want dennervation then they would do test stops first to see if it worked? I will have to research it as I only got the letter yesterday.

Yes I have been thinking about the stimulator actually, have you got any experience of it?

[SweetieBaby]

I think the trial injections are normal before the denervation. I had them and they showed that the denervation would help with the pain. The pain relief from the trial injections was short lived but it showed that the right areas ere being targeted. Had denervation to both sides of my spine - one side worked very very well and I still have pain relief over a year later. Sadly there was a problem with the second side and I now have nerve pain down my leg and in to my foot.

I am having the stimulator implanted the week after next. I have no actual experience of it (yet 😨) but the idea has been explained to me by the consultant so that I could decide if I wanted to go ahead.

I totally get why you want to stop the medications. I take pregabalin twice a day and then tramadol/ cocdamol when I need it. Tbh the tramadol etc doesn't really work for the nerve pain, it just gives me horrible side effects and I really hope to be able to come off everything eventually.

I really feel for you. Nerve pain is horrible and not many drugs seem to help it.

Good luck with your treatment. I hope you find something that works. Maybe ask your Dr about spinal cord stimulator although in your place I think that I would try the denervation first, just bear in mind that the pain relief might not be permanent.

[duckduckmouse]

Thank you so much sweetie.

Come back and let me know how you get on? I wish you the very best of luck in the future.

I really hope I get relief from something, even just so I can have a baby and then I can take the medicine again until we come up with a plan to move forwards.

Love and light x