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anita

Registered: Aug 28, 2004
Posts: 247
Reply with quote  #1 
 Hello everyone

I had a pudendal nerve block done last Tuesday 28th June. I was pain free Wednesday which was bliss,but usual pain since. Consultant sid it takes 4-6 weeks to get a true picture of how effective it has been.

I know members of the forum have had nerve blocks, I woul be really interested to hear your experiences.

Many Thanks

Anita
Jenb

Registered: Dec 29, 2009
Posts: 327
Reply with quote  #2 
I am sooooooooooooooo sorry i haven't rung you this week hun - I will ring you today I promise xxx

Anhow here's my story.....


I had my spinal nerve block (ganglion) done at the end of May, Initially I had some really great results from it.  I was able to lower the strenght of my pain killers down to 10mg daily (was on 60mg, plus additional 10 or 20mg if i had break through pain). My urgency and frequency had also reduced dramatically and I was able to go through the night without waking because i needed loo.  My bladder also managed to hold more and for the first time in a very long time I was able to have a "proper" wee - no stopping and starting or needing the loo again 5 minutes after just going 

However over this past week things haven't been so great.  I'm not sure if I have a viral infection or something simliar as i have been really tired, washed out and complete lack of energy.  I also haven't been sleeping well and have been waking needing the loo several times in the night.

My pain has also crept back up again and i am needing to taken more than i did beofre the nerve block (am back on a minimum of 60mg of oxycontin a day, plus around 20 - 40mg of Oxynorm for breakthrough pain)

Its also just my luck that my GP is on leave so i haven't been able to  discuss the changes with him - its not worth seeing another GP as I have such a good relationship with my GP and he knows what pain relief/strength of dose works etc.

I'm desperately hoping that this is just a blip and its just a virus or something similar and that things will go back to how they were after the nerve block was first done.

Despite things going backwards for me at the moment, I do not regret having the nerve block done and I would happily have another one if its offered as I feel I have a great benefit from it and it has given me hope that with a bit more fine tuning a nerve block could give me the relief from pain and significantly reduce the symptoms from my IC & Fowlers Syndrome  - its certainly the most effective treatment I have had so far (apart from the oxycontin, but that's just for pain) 


I'm keeping weverything crossed for you and I really hope your nerve block is a great success and you receive a long term benefit from it xxx

__________________
Diagnosed with IC and Fowlers Syndrome
Decision finally made - i'm having the Scaral Neuromodulation - have been told Stage 1 should happen sometime in Decemeber 2011..........
sammie1970

Registered: Dec 1, 2009
Posts: 308
Reply with quote  #3 
Hi,

I had a nerve block on my lower back 8 months ago, I was pain free for 2 days before the pain came back. People can get 3 months or more relief but I was one of the unlucky ones. I have since had radio frequency treatment where they burnt 6 nerves in my lower back, this made me worse for 2 weeks and then my pain was on the same level as before.. So again, another unsuccessful procedure. I was also told it can take 2-6 weeks for your pain to go. I hope you have success with yours, please keep us all posted :-) x
anita

Registered: Aug 28, 2004
Posts: 247
Reply with quote  #4 
 Hi Sammie

Thank you for your post. I am feling very disheartened in so much pain today. I have been told pulsed radiofrequency is the 2nd stage but they will not carry out the procedure if I do not have any relief with the nerve block.

I suppose someone somewhere must have success with these procedures.

Can I ask how you are currently managing your pain.

Love
Anita
sammie1970

Registered: Dec 1, 2009
Posts: 308
Reply with quote  #5 
Hi Anita, They only carry out radio frequency if the blocks have been successful, obviously because of the very high cost involved. My block lasted two days and they thought that was great as they seemed to think they had found the cause of the pain. I was over the moon, until I had the procedure and after waiting and praying, found it didnt work. I have to tell them this in 2 weeks and Im dreading it.
You asked about pain relief.... I cry (Alot) I think this helps me get the stress of feeling in so much pain out...
I have a very good gp that will let me try anything I suggest, I have tried the strongest painkillers you can get.. Fentalyn patches and oxy drugs.... I couldnt sleep, I itched terribly and felt very nauseous. I lasted 2 days on them... Then I cried again.
I was given Oramorph(It dulls some pain but not my Ic or back) as I suffer from IC, IBS, slipped L4/L5 disc and S1 nerve irritation, they also have suggested I may have fibro as I never feel refreshed after sleep and all my muscles ache and are very tense.
These are very strong drugs BUT do not help with nerve pain at all. Pregabalin is often prescribed at that may help you but be prepared for weight gain, You may not have any but lots of people do, I had no other side effects but stopped taking them as they didnt help. They are not cheap, so make sure you see a nice gp!
Not many people will be aware that about 3 weeks ago a new drug (Classed as a wonder drug) called Palexia SR was given the go ahead in Scotland for pain relief to help people with chronic illness, Its a drug that works in a totally different way to opiods (Something to do with nerve pain signals) but is still a controlled drug and as such needs to be given under stright gp guidelines. I took a print out from the dailymail to my gp and asked to try them, They are about £1.70 a day, so again very expensive but tests have concluded that they have a better effect on nerve pain and post-operative pain than any other drug with far fewer side effects, less constipation, less nausea, less itching. I took one and waited for the awful side effects and had none, you are told to have 1 x twice daily, then 2x twice daily and finally a few days later 3 x twice daily, then your gp should check how you are doing pain wise and adjust the dose. It has helped me slightly but that is far better than not helping at all, I take oramorph when needed but try to only take when desperate (No ill effects taking this)
I have Elmiron and Ami, an antihistamine and a daily antibiotic for my Ic and am awaiting my new bladder instills to arrive at hospital.. The cystistat didnt help.
I take diazipam at night, that relax me and my bladder and also have a sleeping tablet, otherwise I just woulnt sleep. I will let you know how I get on at the pain clinic, I say take what is offered, you cant lose and it may help.... I am running out of options for my severe, constant back pain though. Good luck and I really hope you find some relief..... Its a struggle feeling so awful everyday and not getting even a days rest from it, Take care,

Sam xx

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