Having Surgery with Prof. Erdogru , advice or feedback

[shirlayneh]

Hi, I'm Shirlayne,
I have been suffering with pne for the last 19 months. As a result from a hysterectomy, and cystocele, rectoccele repair. I have visited with Dr. Hibner, Dr. Conway, and Dr. Dellon, I also had an MRI with Dr. Potter. It was recommended that I should have pudendal nerve decompression surgery. I have decided to go through with the surgery, but with Prof. Erdogru, mostly because of the advancment with the laparospic procedure, and also cost. My insurance is not going to cover the surgery, it's considered investigational and experimental. I was just wanting some feedback from anyone who has had this Surgery from Prof. Erdogru. I am scheduled for Oct. 9th.
Thanks, to all

[Faith]

If you are on Facebook, there is a couple of facebook PN groups (that are closed) and there is a lady on there who recently had surgery with Dr. Erdogru and is from the States. Her name is Lisa, you may have corresponded with her. I wish you the best and please post back with an update from time to time when you feel up to it. I'm very interested in the laproscopic approach and am watching and waiting hopefully that he will continue to have good successes. Very few insurances seem to cover the surgery so going to Turkey and paying $10,000 or so is MUCH cheaper than being charged $60,000+ for surgery here like a friend of mine was.

[helenlegs 11]

Good luck Shirlayneh,
The difference in cost is dramatic isn't it. I expect that you have done all of the PN blocks etc, although when it is a problem from a surgical procedure there doesn't seem to be any option other than surgery unless you just try and live with it At least you are giving yourself the chance of recovery with this.
All the very best,
Helen

[shirlayneh]

Thank you, Faith and Helen,
I have not heard of anybody else from the states who has had Surgery in Turkey, I will definitely try and contact Lisa, thanks for the info. I have done 3 PN blocks, and also worked with a PT for a few months. I feel this is my best option for any improvment, and I'm really excited for hopefully some great results. I will keep you updated on the recovery. I have started a blog for our friends and family to follow my recovery while we are away. You are welcome to check this out also, if you'd like to follow my progress. ( meandpne.blogspot.com )
Thanks for the well wishes,
Shirlayne

[pmurali1]

There is another forum member Ali who got operated yesterday by Dr Tibet Erdogru. I am not sure whether we can expect his experience before yours. Its better you join the Facebook group. I am also getting updates from there.
Hope your surgery with Dr Tibet goes well..

Murali

[molly]

Hi Shirlayne,

I,m from the UK and I had pn decompression surgertbwith Dr Erdogru in may this year. As yet I have not had any improvement but still hope to do so given time. Dr Erdogru feels I should have better by now but I am trying to remain positive.

The care in Turkey was very good and Dr Erdogru is a very kind and caring doctor. Whilst Dr Erdogru speaks English , most of the nursing staff did not, so Igot by with sign language and a few words.

I wish you all the best, you will be in good hands, please let me know how you get on.

Best Wishes Molly

[Faith]

Sorry to hear you have not had improvement in your pain yet, Molly. Would you mind to share more about your history/what Dr. Tibet found during surgery exactly? Did you have any imaging that showed PN entrapment prior to surgery? Hang in there....hopefully you will have better days to come. Do you mind to share your symptoms now?

[molly]

Hi Faith,

I have had pn for five years following a manual manipulation of a retroverted uterus. Ater this I began to feel uncomfortable. The extremely arrogant consultant, who would,nt accept he was resposible for triggering the pain , proceded to laparoscopy, then totally unnessary hysterectomy.


T his sent the pain into orbit at which point he would have nothing more to do with me.

I was now having exteme vaginal rectal and perineal pain.

After a short time six months I was refered to London where Dr Baranoski diagnosed pne, after four blocks and one RF?

I,ve also had eighteen months physio, spinal blocks andbotox injections with with Dr Greenslade, so surgdry was my lasr resort.

The delightful Dr Erdogru perfofmed surgery and found the nerve to be severely trapped at the ligament grip.

I had severe pain post op and the flight home was a nightmare

I,m back now towhere I was before I went, I,m hoping time will heal.

Dr Erdogru says Iam the only pn patient to have not responded with his current technique.

Sorry this is rather long I just got carried away.

Regards Molly

[Faith]

Thanks so much for sharing, Molly. I am so sorry you have not seen benefit of the surgery yet, but hopefully in time you will have some pain relief. It is good you are at least back to your pre-surgery pain level. I can empathize with the fustration of having your pain begin due to negligance of a healthcare provider as my pain became life altering due to an SI manipulation from a PT. I am sure it is very frustrating to be the only person to not respond to a surgery that has been claimed to help everyone so far, but not matter the outcome at least you've tried your best to find relief and hopefully it will pay off in the end. If not, don't give up and keep searching!

[molly]

Thanks Faith, I feel at the moment I have everything I can to try and rid myself of this devil. If this is how Ihave to live the rest of my life, Ihave come to terms with it, who knows what break throughs around the corner

Kind regards Molly