I am booked in for a lidocaine infusion for my chronic pain in London in 2 weeks. I am very interested in anyone else's experiences.

[Emmax]

[Hidden]

Hi Emma I too am booked in during August so maybe we can exchange experiences soon? Good luck!

[SuzyQ]

Have you been to Nantes yet Emma?

I'm surprised that you are having the lidocaine so close to the French trip.

How did that go? I would be really interested to hear.

I had a lidocaine infusion Feb 2012.

I had no pain for 27 hours! To me this was a miracle, after 18 years of relentless pain.

However, Dr B didn't think this was significant enough to go any further with any other treatments.

So that was the end of that.

It was worth it for 27 hours pain free!!

[jackytap in reply to SuzyQ]

Hi, I am waiting for an appointment with this prodecure,how is it done? Jacky

[Emmax in reply to SuzyQ]

Really helpful hearing what it is like, thank you, the nurse says everyones result is so different.

I don't know what will go on in Nante but will double check with Dr Currans team whether I can still have the infusion when I get back from France. I think they will probably move it for another month or so. I didn't mention Nante to the London specialist because I have waited a year for both appointments and didn't want them to lose interest as Dr B was not that shall I say positive about Nante being an option.

I have dosed myself up to get to Nante and have a suitcase full of drugs, hot water bottles and a great file of medical notes! Better leave, fingers crossed for some relief and some more insight. A little nervous as I have left my husband with our high maintenance children and I have not been alone for a long time. I will try and enjoy the peace and a little rest.

How are you doing?

Take care,

Emma

[SuzyQ]

It was very straight forward. Dr B inserted a canula into my hand. Then the nurses started the lidocaine in through the drip.

I was monitored for blood pressure, heart rate etc every 15 minutes for the first hour, then 30 minutes after.

It took about 3 hours for all the lidocaine to go through.

I didn't feel numb anywhere, but felt cold in the regions the drug travelled through.

It made me feel drowsy, I slept on and off.

You can't eat or drink before the procedure, so I was very grateful for a coffee and biscuit!

Once I had demonstrated that I could stand & walk unaided, I was allowed to go home. Had to be accompanied for 24 hours.

Also told to make notes of what I felt afterwards.

Hope this helps,

Sue x

[SuzyQ]

Hi Emma,

I have been thinking about you a lot!

Firstly, how did you cope in Nantes, how did the blocks go?

Any relief? (Fingers crossed)

Did you go ahead with the Lidocaine infusion, or was it not possible after your trip to France?

So many questions, sorry! But the bottom line is, I really hope that you are doing well.

Hugs to you,

Sue xx xx

[Emmax in reply to SuzyQ]

Hi Sue,

Nante was an experience, I think much better to go with someone else. I met with all the specialists and had the block. Although I only felt no pain for minutes, they said that it was enough to for them as the final tick in the box for them to offer bilateral decompression surgery. I am worried that the fact I had just been lying down for 20 min was the reason I had no pain for a few minutes....anyway that was there conclusion and unfortunately as the block was purely diagnostic I have had no improvement in pain. I never read information properly and had it in my head I may get some improvement for a while so that was disappointing. I am sure I could now go back for nerve blocks but they seemed quite focussed on surgery. The block really flared me up and I was in agony and alone so not a good combination. It was so good to see my husbands and childrens face when I got home. I have no regret going to Nante and it may end up being my only option. I just want to make sure I have covered all bases before I take that route.

I went in for the lidocaine infusion a few days ago and it was very easy and no dramas. I was a little apprehensive as some people have a bad time with allergic reactions. They do hook you up to a lot of monitors so that is also a bit disconcerting. Anyway after lying down for a few hours with a canula in I went home. It felt like nothing for me. The woman next to me also all hooked up,started playing scrabble with her friend, so a very relaxed atmosphere.

I am too scared of analysing too much at this stage because Dr Curran and the nurses said that for some lidocaine infusion patients it can take a week to start having a positive effect. I have noticed my face pain has improved already. I go back to Dr Curran next month and we will discuss the next step. She is of the opinion that my issues may well not be pudendal nerve and is sending me to another colorectal surgeon for him to review my case as she says some muscular issues can mimic pudendal symptoms. I think she thinks he may offer botox for my rectal spasms. Really not sure how that would work with continence. She has also been very helpful suggesting a new medication regime which is helpful as last year was a disaster with me trying to manage myself.

Dr Curran has me starting some sort of Pain Management Programme through UCLH on the NHS next month. I have to travel up to North London every Wednesday for about 10 sessions over a period of a few months I think. It is run by a team of psychologists, nurses and doctors. I am worried how I will cope with even getting there weekly, the children's childcare, anyway I must try hard, it is another option I must try. Have you done this programme or seen Dr Curran?

My husband was critically ill a few years ago and he says he will never forget my support so he is equally amazing with me now, though I do get worried this is a much longer haul than his few months of illness. Feeling a little deflated after Nante I happened to email Stephanie Prendergast (the amazing pelvic physiotherapist) in San Francisco to see if there have been any cancellations as I am not meant to go to her for a week until September. The lovely receptionist said they have a week that has been cancelled next week. I phoned my husband from Nante and he said go for it. He will take the children to our friends in Italy the same time I am away so at least they will all be distracted and my husband will have company with our friends. I feel guilty because it is summer and San Fran is so far the tickets are costly, then there is the cost of a weeks two hour daily sessions with Stephanie, the hotel, taxis. Anyway it is such a roller coaster, the week before I went to Nante I was huddled under a blanket each day, I really do feel like I am dying some weeks. I seem to have found some reserve of energy for these visits and pray that something works.

Gosh it is midnight, I must try and get to sleep. Bad attack earlier so the morphine then keeps me awake if I take it late. Please let me know how you are doing! It is so nice to have the support through this forum, I am sure alot of people I know think I am some mad women when I tell them all this, so nice to communicate with people who understand the hell this journey is.

Please let me know how you are. Have a good weekend, sunshine at last.

Take care,

Emma x

[PPSN_JudyB Pelvic Pain Support Netwo in reply to Emmax]

Hi Emma,

The positive diagnostic block you had, pain free even for a short time in Nantes was an important indicator. Generally physio should be spread out over several weeks to give you a chance to put some of it into practice yourself. I hope the long distance travel ( to the US) doesn't aggravate the situation for you physically and financially. Be cautious as there are a lot of people just wanting to make money from patients. There are many people on here who have done the programme at UCLH and posted on here about it so you could ask how they got on.