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Re: update diary after pn surgery
Posted: Tue May 13, 2014 3:22 pm
by chillijava
no i didnt try physio as it was never mentioned to me by anyone, but just the thought of doing that makes me feel very negative, it would make things worse in my case
andrea
Re: update diary after pn surgery
Posted: Tue May 13, 2014 6:47 pm
by Positivepoppy
The physio is invasive as your pelvic muscles are internally worked on, only had one session so early days. I'm also trying AMATSU alternative therapy to work on trigger points.
Have you had any contact with the Bristol team at all, how are you coping are you back in work?
Take care
Re: update diary after pn surgery
Posted: Wed May 14, 2014 1:13 pm
by Alan1646
I keep looking on this section in the hope that there will be a positive success story by someone who has had surgery in the UK. Surely, there must be someone. I remember one poster saying that there had been several successes at Bristol- is that correct? All we hear is of disappointments. Is there anyone at all who has had significant improvement after surgery?
Re: update diary after pn surgery
Posted: Thu May 15, 2014 9:41 am
by chillijava
the last time i spoke to anyone at bristol was last october, no one has rung me at all and no follow up, i feel like they were just after the money as i went private.
i must admit my new pain consultant and also the neuro surgeon who will be fitting my stimulator have made me feel like a person not a meal ticket and this is now on the nhs, so there you go.
i have been told that my trial will be around july time so i will keep you all posted
andrea
Re: update diary after pn surgery
Posted: Thu May 15, 2014 7:36 pm
by Positivepoppy
Sadly that has been my experience, I have now given up as it was causing me more stress=flare ups to keep being ignored. I'm so glad you have found someone that treats you with compassion it really does make all the difference. Good luck with the stimulator, keep me updated x
Re: update diary after pn surgery
Posted: Thu May 15, 2014 7:37 pm
by Positivepoppy
Sadly that has been my experience, I have now given up as it was causing me more stress=flare ups to keep being ignored. I'm so glad you have found someone that treats you with compassion it really does make all the difference. Good luck with the stimulator, keep me updated x
Re: update diary after pn surgery
Posted: Tue May 27, 2014 10:35 pm
by Violet M
Andrea,
I'm sad to hear your surgery was not successful.
Unfortunately, it doesn't work for everyone but I wish you all the best with the neurostimulator and would be interested to hear how it works for you.
Violet
Re: update diary after pn surgery
Posted: Mon Jun 16, 2014 12:54 pm
by chillijava
well i have just been given the date of the 1st july for my addmission into hospital for my stim trial, and i will be as far as i know in hospital for about 5 days to see how it goes and if it works for me
andrea
Re: update diary after pn surgery
Posted: Tue Jun 24, 2014 4:23 am
by Violet M
Andrea,
Hoping very much that this works for you.
Best,
Violet
Re: update diary after pn surgery
Posted: Wed Aug 06, 2014 8:12 pm
by chillijava
well stim trial went good, but because of all the stress i now have a real bad fibromyalgia flare, this always happens when i am stressed. i have just had my next appointment to see my neurosurgeon to find out if he is going to go ahead with the full implant, so i will keep you posted
andrea