Health Organization for Pudendal Education

hi everyone, hope you are all doing as well as you can be with this awful condition, sorry i havent been here for a while but i have soooooooooo much on at the moment.
i just wanted to keep you all updated as to what is happening with me. i have seen mr dixon again in bristol and he and dr greenslade have decided i will be a good candidate for pn decompression surgery on my right side which is being scheduled for this month not sure of the date yet but possibly the 17th at the spire hospital bristol. they have said that after the surgery i need to wait 6 months to see if there is any improvement to the pain and if not then ketamine could be used and the final step would be spinal cord stimulation if all else fails.
if anyone has any tips on recovery or do's and donts after surgery would be most grateful, keep you all posted when i know the definite date, have a good bank holiday
p.s what is this ketamine thing?, i forgot to ask
andrea

Hi Andrea,
Good luck with the surgery. Ktamine is a drug the are just starting to use more teadily and sometimes do as days of treatments. Asfor dos and don'ts do be even more patient than you have been! It is an icredibly slow recovery but it is finally paying off for me. Once I get off Lyrica I can post yhe success, finalmiracle was acupuncture. Do not push to hard to do to much. Get PT ahen they say it is okay I think after 4-8 weeks the nerve glides are supposed to prevent scar tissue buildup. I avoided stairs there were some doctor guidelines posted but not sure where for things to do and how to get through the beginning stages, maybe someone will know where thy are? They suggested someone be home with me the first 7 days which was good since I was taking narcotics and could easily have fallen or something.Take Care
Janet

Yes Good luck Andrea. . . I have no post surgery tips but I would back up what Janet said about nerve glides, if it were me I would pay attention to this anyway.
I love the way the Bristol team have a post surgery back up plan and really want to help. Doubt you will have any contact problems now, at least hope not!
Take care,

Helen

Andrea, all the best for your operation, sadly the options are so limited for us .

Apart from taking life very easy post op I found my local pool very beneficial obviously after the wound had totally healed.

Luckily the water is warm so great for this condition.

Dr Greenslade has recently referred me for hydrotherapy which I have in Bath, again feels great. If I won the lottery I would install a hydrotherapy pool.

I don,t think I can add anything else, keep your bowels soft and regular as constipation is a big enemy.

All the best.

Molly

Will think of you Andrea

Larry's story pictures on the home page has a bit about ketamine infusions if this is what is meant.

Take care

Rosemary x

Hi Andrea, good luck with sgy. Can I suggest you get second opinion though or go to team in France or Spain. Len

thanks for your concern, but i am quite happy with the bristol team ie dr greenslade and mr dixon, i have been examined had nerve block etc and they seem to know what they are doing. you can never be 100% sure that pn is the problem, but right now i dont have anywhere else to go, my quality of life is just too poor. we are currently in the process of clearing my mums house out as she is coming to live with us and last tuesday i did a lot of going up and down stairs and also bending and now i am paying for it with a bad flare, so life is virtually on hold at the moment.
i am under no illusion as mr dixon did say not to put my expectations too high, his aim is to get me sitting and he will not know until my surgery if pn is the problem, if i still have pain 6 months after surgery then i will be having ketamine infusions and if after this the pain persists than the last resort will be a spinal implant to mask the pain.
i do know that both dr greenslade and mr dixon go regularly to france to professor robert so i am sure they know what they are doing.
should know this week when the date for surgery is.


andrea

Hi Andrea

It sounds like best thing for you so good luck with it. I guess when in so much pain you try anything so can empathize. Have been there and gone through Bristol team myself. Regards, Len

Hi Andrea

It sounds like best thing for you so good luck with it. I guess when in so much pain you try anything so can empathize. Have been there and gone through Bristol team myself. Regards, Len

hi lenny
how did you find the bristol team as regards care etc and do you regret having the surgery?



andrea