where would you go for surgery?
I live in the Uk and so far have seen many doctors. Gone to NY for Dr Potter MRI (scarring entrapment of dorsal nerve and of pudendal nerve in anococcygeal ligament). Gone to Belgium to see Beco ("serious case, you probably have had it for many years, go for sugery asap"). Have an appointment with Bautrant in a month> Not yet done blocks but cannot sit even with cushion for one minute and pain only controlled with Lyrica and amitryptiline.
I have seen that the most recommended dr is Hibner but it is difficult for me to think about surgery so far away. Who would you recommend this side of the Atlantic? I am trying to do stats of success rates based on forums comments but it's impossible!
Thank you for your suggestions and experiences
If you lived in Europe?
Re: If you lived in Europe?
Manon,
I am so sorry you are in this dilemma. You said that your pain is "controlled by Lyrica and Amitriptyline." What do you mean by this? At what pain level does this keep you at?
What I would do is wait and see what comes of Dr. Aszmann and Dr. Hibner's meeting in Vienna. For me, personally, I would spend every last dime to go to the best doctor, insuring my best chance of getting rid of this blasted disease forever.
Why did you choose against Beco? And what are your primary symptoms?
Blessings,
A's Mommy
I am so sorry you are in this dilemma. You said that your pain is "controlled by Lyrica and Amitriptyline." What do you mean by this? At what pain level does this keep you at?
What I would do is wait and see what comes of Dr. Aszmann and Dr. Hibner's meeting in Vienna. For me, personally, I would spend every last dime to go to the best doctor, insuring my best chance of getting rid of this blasted disease forever.
Why did you choose against Beco? And what are your primary symptoms?
Blessings,
A's Mommy
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
Re: If you lived in Europe?
Hi Manon,
Have you had any consultations with either of the UK teams?
Kath
Have you had any consultations with either of the UK teams?
Kath
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manon13
Re: If you lived in Europe?
Thank you all for responding!
manon
manon
Last edited by manon13 on Tue Aug 11, 2015 3:31 pm, edited 1 time in total.
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catherine a
- Posts: 291
- Joined: Sat Sep 18, 2010 4:46 am
- Location: Perth Western Australia
Re: If you lived in Europe?
Manon,
I only just came across your post, sorry if my message is a bit late.
I traveled from Australia to consult with Dr. Bautrant in Aix-en-Provence. I had PNE surgery there in 2007. You can read my update on success stories or on the home page by clicking on the left hand column under 'personal stories'. I had no other option but to travel to France or the USA and I'm happy with my decision to go to Dr. Bautrant. Recovery depends a lot on yourself too, by being positive, patient, and not expecting it to help overnight. it's a long, slow process to recovery and you need to be prepared for that.
Catherine
I only just came across your post, sorry if my message is a bit late.
I traveled from Australia to consult with Dr. Bautrant in Aix-en-Provence. I had PNE surgery there in 2007. You can read my update on success stories or on the home page by clicking on the left hand column under 'personal stories'. I had no other option but to travel to France or the USA and I'm happy with my decision to go to Dr. Bautrant. Recovery depends a lot on yourself too, by being positive, patient, and not expecting it to help overnight. it's a long, slow process to recovery and you need to be prepared for that.
Catherine
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
Re: If you lived in Europe?
manon,
my pain is caused by the bartholin gland! did you get to see the doctor in london?
god bless
my pain is caused by the bartholin gland! did you get to see the doctor in london?
god bless
tiny bartholin infection triggered vulvar nerve pain.
Diagnosed vulvodynia Sept '13 (no burning but electric shocks, paresthesia, aching, buzzing)
Feb 14- Taking 50 mg Ami/Elavil
May 14-pain free with 50 mg Amitriptyline and 300 mg Pregabalin. Back to normal
Dec 15- weaned off all medication, pain free, wearing skinny jeans
April 17- pain returned, Amitriptyline 50 mg. Something doesn't make sense in my diagnosis.
Currently treating depression and anxiety
Diagnosed vulvodynia Sept '13 (no burning but electric shocks, paresthesia, aching, buzzing)
Feb 14- Taking 50 mg Ami/Elavil
May 14-pain free with 50 mg Amitriptyline and 300 mg Pregabalin. Back to normal
Dec 15- weaned off all medication, pain free, wearing skinny jeans
April 17- pain returned, Amitriptyline 50 mg. Something doesn't make sense in my diagnosis.
Currently treating depression and anxiety