france

[chrissy]

Hi
Is France the only option for decent surgery? I live in uk so this wouldnt be that bad for me but still.... I am under Dr Baranowski in London. I have read that after the nerve blocks he doesnt do more is this correct? I dont want counselling this is physical not mental. Physio has not helped me.
Is surgery even possible with two children (I have help)
Thanks
Chrissy

[Rosemary]

Hi Chrissy
I am in the UK - i have only made enquires about France no more.
Just wanted to say that the pain counselling showed me how to view things differently which has helped with dealing with the pain.
Rosemary

[molly]

Hi Chrissy,

I,m also in the UK .

Firstly I would caution against too many nerve blocks, unless there is a very good reason. Dr B. does like multiple blocks, I had five, and was definitely worse after these. I do not think the French team do that many either.

There is a team in Bristol doing decompression surgery,it would have to be private as I am not aware that there NHS practise has been recommended.We don,t seem to have heard too success stories from people who have had surgery from here.

The recovery is tough and as you probably know the results are unprintable with very mixed results. The French team do have an excellent reputation, and you as you are young this would go in your favour, if you have a lot of support to help with your children that would be a big advantage.

Dr B. Will probably try to deter you as he does,nt believe surgery works,you have to make your own mind up, it's your body not his.

As far as counselling is concerned I had a very poor experience from this team I hope This isn't,t typical.


Hope this is helpful.

Molly

[chrissy]

Thank you both for your Replies.
Molly so much to ask you! How do you go about getting seen in france? I have private insurance but I doubt this will work in france??
I thought Dr B was the gold standard in uro genital nerve treatment thats why I went to him I live up north and it has cost us a fortune in hotels and stuff.
I would have help with the kids but its whether its realistic. How was your recovery? But I dont want to spend this precious time in a fog of medication.
I emailed the secretary today to see if they will still do the second nerve block after I had such a bad reaction to the first.
Thanks sooooo much for the reply and any help you can give xx

[sweetpea02]

Hi chrissy, i've recently had surgery in france. I saw dr demello and dr greenslade prior to going to nantes in sept last year. I was so scared when they said i needed surgery as i had read lots of negative stuff but i can honestly say i don't regret my decision at all. I know i'm only 3 weeks post op but i have hope that i'll get better. P.m me if you want, i'm happy to help.x

[helen1000]

Hello Crissy,

I live in US and cannot contribute to your choice. Here is what I know about US doctors and what you should be probably looking when considering your European choices. Alacoc canal are 2 ligaments ST (big) and SS (small). In US Dr Conway and Dr Hibner save ST ligament while severing SS. This makes less probability for SI joint dysfunction after operation. Some other doctors in US and in France as far as I know still cut ST. Dr Hibner takes one of ligaments that hold SI joint and uses it during operation. It again compromises SI joint. Dr Conway does not do it. I would rather keep my SI in tact. Dr Hibner is using platelet plasma and wraps nerve into collagen which is probably good but there is not statistics on it. Some doctors in CA do laproscopic procedure but have less success rate because worse visibility. I would rather have scar than lower probability of success. The last thing PTs that deal a lot with surgical patients know outcomes because they have patients of different doctors going through their hands. I do not know again who is it in Europe. But in US it is Stephanie and Liz in CA. My PT who does this stuff locally but not as much as them called them and asked their opinion on doctor's outcomes. Try to get connection to PTs in Europe who deals with surgical patients. Try to ask about ligaments and operation techniques. Kind of try to project what I was told by these PTs to Europe and find the best.

I wish I would know more.

Good Luck,

Helen

[molly]

Hi Chrissy,

I had my surgery in Turkey just under two years ago, and whilst I don,t regret my decision I have,nt made a huge amount of progress either. The trouble is options for this condition are so limited.

As far as France goes I di not think your health insurance would cover you. Dr B should be able to refer you he used to have contacts, if not Judy on the UK pelvic pain website will be able to.

Having suffered this terrible condition for over five years I have become very sceptical about doctors. If I had my time again I would not have gone to London, I would have seen Dr G in Bristol, I didn't know he existed even though I live very near Bristol, or I would have gone directly to France. In my very humble option I think too many blocks further damage the nerve, I do believe there is some Australian research which finding this to be the case.

If you have a diagnosis why do you need further injections?


Please feel free to ask as many questions as you like, it's a big decision and fellow patients do have more experience than doctors.

Love Molly

[chrissy]

Thanks everyone
Gosh I really don't know what to do for the best. I am due to see dr Baranowski for my second nerve block in a week and a half.
Do you have to go for a consultation in France prior to surgery? This whole thing is costing me a fortune already!

[molly]

Hi Chrissy,

The best person to communicate with is either Dr B. Oort Judy from the pelvic pain website. It can be a very expensive process which you don,t mind if you get results.

I can sympathise with you being unsure about which way to go, all I can offer is try to get as much info. As possible before you make a decision.

Keep us informed.

Molly

[chrissy]

How do I contact Judy? I know I have seen it posted somewhere but now I can't find it! Thanks everyone you are all amazing x