Health Organization for Pudendal Education

Hi My name is Molly,

I have had pn now for four years which started after a gynae disaster. To date this is what I have had

I have had nerve blocks and neuro modulation in London.
Eighteen months physio with a very good pn aware physio.
Two lots of botox with the lovely Dr Greenslade.

On top of this I,ve tried acupuncture, magnetic therapy, chropracture treatment,and several other alternative treatments, with little or no success.

Earlier this year I finally decided to have surgery, as a last resort.

Having read about Dr Tibet,s new operation I felt it looked very promising.

I visited in February, where I met the team, and Dr Tibet, who is a very nice man. On this visit it was a through examination, from a range of specialists I returned in May for right sided decompression surgery. The hospital and staff were all very nice and Dr Tibet was very attentive.
It was a long operation(six hours), and the nerve was badly entrapped. I did have a haemorrhage, which I wonder has effected my recovery.

Unfortunately, I have made no progress at all in the last four months which I had hoped to do. Most of Dr Tibet,s patients respond very quickly, so I am really disappointed although I still hope I may improve in a longer time frame. Dr Tibet continues to monitor my progress via e-mail as he does all his pn patients.







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Hi Molly,
Thanks for your honest post, I hope that you will continue to improve and that the complications with the op are the only things holding you back from a speedier recovery.
There are many people on here who have had to pass the operations anniversary to see any great benefits, although that is not with Dr Tibet. I have heard some good reports from his patients but everyone is different and you do sound like you had a big and difficult op.
Would love to be able to keep up with how you are progressing
Take care,
Helen

Hi Molly,

I met Dr. Tibet in May and he seemed like a nice guy.What is Dr. Tibet's reasoning to why you haven't seen any improvement in your symptoms.I would really appreciate if you could elaborate on what your symptoms were in the first place.Do you have aching pain when you sit at your ischial tuberosity(sitting bone) amlong with urinary frequency/urgency etc

I look forward to hearing from you.

Kind Regards,
Ali

Hi Ali,


My history is pretty much as are many people,s. The pain started after a painful gynae examination. I started to have trouble sitting and vaginal discomfort. The consultant then procceded to laparoscopy, which showed nothing, he then procceded to hysterectomy.

By this time the pain had become very severe and I also suffered from urinary frequency, rectal pain kicked in and the rest is pretty much standard.

MRI was clear, thankfully got diagnosis quite quickly, thanks to a friend scouring the internet for hours.

Dr Tibet,s last feeling was I had another reason for my pain, but as you can see I,ve had a significant number of investigations, including which I forgot to mention, one caudel block and one sacral nerve root block, so if there is another reason, I really don,t know how to go forward .

Hope this is helpful,

Molly

Hi Molly,

Any complications from the surgery like restrictions/pain to bending, walking ,lifting etc.

Thanks,
Ali

Hi Ali,


Actually funny you should say that, because I did have a significant haemorrhage which resulted in a blood vessel having a clip put on it.
Dr Tibet did wonder if this could be irritating the nerve, but decided probably not and advised me to go home.

I have asked him if he would reconsider this, but he has not replied to me.

Other than that I cannot think of any other problems, a lot of post-op pain, again which was unusual.

The surgery was also very long (six hours), and I wonder if the nerve suffered being stretched
for so long on decompression, but again I do not know how long his surgeries are as he has not answered this question.


Regards Molly

Hi Molly,

Sorry to hear your surgery has not proven successful yet. Most people I know of who have had PNE surgery do not get well by the 4th month and in fact the 4th month can be the worst because the nerve can be waking up. I think it is way too soon to tell if your surgery was successful because nerves take a long time to heal. I was on narcotic pain medications until 9 months post-op and couldn't really count on a good day until 18 months after surgery. I know it sounds like a long time but don't give up hope that you may yet have improvement.

Take care,

Violet

Hi Violet,

Thank you for your kind message.

It is only the fact that Dr Tibet,s patients respond so quickly that makes me despondant. I ,m quite happy to wait if I knew there was light at the end of the tunnel.

Molly

Unfortunately, I have made no progress at all in the last four months which I had hoped to do. Most of Dr Tibet,s patients respond very quickly, so I am really disappointed although I still hope I may improve in a longer time frame. Dr Tibet continues to monitor my progress via e-mail as he does all his pn patients.

Molly,

Can I ask you what makes you believe that most of Dr. Tibet's patients "respond very quickly"? I don't really know anything about Dr. Tibet, but I do know that some doctors tend to overstate their accomplishments and success rates. My statement to you here has nothing to do with whether or not your recovery will come. Just want to let you know that some doctors really do exaggerate their success rates as well as how long the recovery can take. I wish they wouldn't, but many do it. I suppose it's done to get patients to have surgery with them.

Did he tell you this ("respond very quickly"), or is this something that you'd heard elsewhere?

Greg

Can I ask where Dr. Tibet does surgery? Also, Molly stated earlier that she liked his new surgery (or something to that effect). Can someone briefly tell me what is different about his surgery?

Finally, are there other people on here who've had surgery with Dr. Tibet who have had good successes? I know I could spend time searching this, but if someone could briefly answer these few questions it would save me a decent amount of searching time.

Thank you.

Greg