first time post re: Prof Robert in France

[sadie]

This is my first time posting...I am so greatful to everyone that takes the time to answer questions, and for the board members that take the time to help , and all the effort of all thoes involved with this web site. I have met so many great friends through networking and PM's. I have been a mamber since 2010 when i recieved a PNB that caused severe PGAD. I am to sick to go on the computer every day so i held off posting until now to ask a question about re-do surgery. I have had bilaterial TG surgery 3-2011 and i am still not well. (Nine months after the suregery i had an MRI with Dr. Potter which showed that there was scar tissue near the st lig .) I was wondering if anyone has been to Prof Robert in France or knows if he does re-do surgery? Thank you and God bless everyone. Sadie

[catherine a]

Hi Sadie,

I was just wondering if you've had any changes for the better despite still being in terrible pain? Like bowel and urinary function? I had TIR surgery with Dr. Bautrant and I can tell you it was clearly 3 years after surgery before I could finally see positive results. I know you had surgery almost two years ago, but has anything changed for the better? Are you seeing a good pain medicine doctor? Are you doing any physio? or hydrotherapy?

I believe some people go into surgery a second time too quickly. I cried and cried such a lot for the first 2 - 3 years as the recovery was always two steps forward , one back. Rollercoaster of pain. Some weeks really bad and other weeks not so bad but always left me thinking that perhaps surgery didn't work. After the 3 year mark, I began to reduce my meds. and increase my hours of work. I've improved tremendously since then. I'm not 100% but the little pain I have is at the SS/ST ligament on the right side where the entrapment was the worst.

Ezzl who posts here has just had a re-do bi-lateral TG after having TIR 3 years ago. I know each and everyone of us responds to surgery differently depending on our state of health, weight, emotional well being etc. Ezzl has been in hospital for longer than normal on Ketamine and is struggling terribly. She's not yet able to post messages here but i'm sure she will just as soon as she's able. Not an easy decision to make but when the suffering is so intolerable what other choices do we have. Would be a good idea for you to wait until Ezzl posts her experience and recovery period. Hang in there.

Catherine

[sadie]

Cathrine thank you for getting back to me. The biggest problem is the sexual arousal on the right side off the vagina and clitoris, labia minora and into the enterence of the vagina..It is horrifying and nonstop.....the pain comes in the form of a "sexual pain" ..like a needle stabing the right side of my clitoris injecting sex, it goes right through to the bone.....and the other pain is from the rt inner lip being pinched with plyers but still feeling sexual for an entire day (the lip buy the way is now 1/3 as big as it use to be as there is no blood flow to that area due to the entrapment)......I am very open about my symptoms so that it can help other women.......I urinate a lot but that is not an issue right now. There are no bowel issues. I do not have the electrical shocks or acid like burning anymore, but I do not know if that is due to the 75mg 3times a day, and the lexapro. That is as far as i would like to go with such sexual descriptions, if you ever want to talk just PM me and I will get backto you. I was thrilled to hear you are so much better. I hesitated going to Dr. Bautrant who I really wanted to go to, because I heard he could not see the ST lig and that is where the mri says my scar tissue has re-entrapped the nerve.

As for EZZL (I hope i spelled that right). Can you tell me who is doing her re-do surgery? You mentioned that she is getting ketamine drips. Please tell her that the ketamine drip was the most frightning thing I experenced in trying to get well. I was tripping and hated it. Even when i left and went back to the hotel where i lived for 5 months in a Marriott in NH trying to get well ...........I would close me eyes and see colors and pictures and sparks of light for days after I was sent home after the ketamine .

And yes Cathrine I keep thinking I should wait but Ali had scartissue in the same place and waited 3 years and never got better and i dont know many that have scar tissue actually get well. How can a nerve that is designed to move freely get well rubbing against scar tissue? Have you heard anything about Prof Robert and the TG approach as far as re-dos go? PS IF I thought Dr. Bautrant would heal me i would fly there tomorrow. Then there is Dr Hibner ...a nother woman with PGAD went there in 2009 with severe PGAD but is still on lots of meds . Where as violet got well and is not on drugs....that is my goal as I am 115lbs and 5'7 and can not take drugs and I'm alergic to morphine and conine....so I need a great surgon . hope to hear more from you and please give EZZL my very best. Sadie There is no spell check and i am on Ambian so good luck making sence of this LOL

[Bathsheba]

Sadie-I have PN from a botched surgical procedure. Symptoms are totally right sided. One symptom is severe pain in my labia minora, rt. side. I too have noticed that the rt. labia minora appears to be shrinking over time .... very strange. It's almost disappearing. Do you know why this happens? '

My most severe pain is in my anus but second most severe pain is rt. labia minora. I guess this should give someone a clue as to which of the PN are damaged but none of the many doctors have told me.

Personally, I am right now very leary of having surgery....
Best wishes,
Bathsheba

[sadie]

Hi Bathsheba
... we both went to the same dr. and radiologist....you wrote in your signature that you may go to Dr. Potter ...I think that is a good idea.... Her MRI showed where my scar tissue was and that is exactly where there is a lot of sexual arousal. Near the ST lig. It is just one more tool for the dr's to use. As for the shrinking labia minoria I am new at all this PN stuff but I have read that it could be the lack of blood flow to the area due to the entrapment....in my case scar tissue. I had no idea you had the same thing, and I understand completely. I would get a PN specialist and get a good diagnosis. Did marvil say it was an entrapped PN? And if PT did not work then "When in Hell keep going" I would not stop till I got answers. I guess there is a time to move forward and a time to be patient. After surgery you need years of patiences but before then you need to network and see the best specialists you can so that you can find hope. You are in my prayers since we first e-mailed a while back and I hope you find the answers you need.

My poblem now is when i went from 10mg of lexapro to 5mg and all the symptoms returned ..so I went back to taking 10mg and it would not work, so I have kept increasing it and I am still having symptoms that I did not have when i was on 10mg.....it has now been 5 weeks since i tried to incease the lexapro and I am now up to 20mg as of last week and still not as well as I was on 10mg. Another patient with PGAD told me just yesterday, the same thing happened with her when she was on anitryptiline....she was on 30mg and tried to titrate down and her symptoms returned....so she kept increasing the dose to get the releaf she had at 30mg and was never able to acheave it , not even when she went as far as 120mg. It is a strange phenomena but I first read about this kind of thing happening in 2010 when I read about it on this forum. I am going to give it a few more weeks and then increase it again. Have you tried anitryptyline just to keep the symptoms at bay till you can find a surgon on some other help? You will get there. Sadie

[Violet M]

Sadie, try sending GregT a private message -- he may know if Prof. Robert does re-do's. I'm sorry, I don't know.

We have spoken many times by phone -- so I think you know what the available options are. It's just so difficult to decide where to turn next.

Hugs,

Violet

[Bathsheba]

Sadie-

"When in hell, keep going." Who said that? Winston Churchill? Another quote: Dum Spiro Spero. As long as I breathe, I hope, by an old Roman (Cicero Cato?), usually translated as "Where there's life, there's hope." Another one: "Keep on truckin'", a comic book character from the 1970's.

Anyway, I am not on lexapro. Didn't know it worked for PGAD. My addiction is to Lyrica. I have tried to reduce the MG from 800 to 600 but my body won't let me. I take the Lyrica at certain times of the day and incredibly I can tell what time it is by the increase in my symptoms. I will start the horrible quivering and twisting and will look at my watch and see that it's time to take my Lyrica. I am never more than 15 minutes off from the schedule.

My MD is now adding Cymbalta to the cocktail, but it may not work as I am suffering from urinary hesitancy-can't pee and this drug is making it worse. Incredibly, it also seems to be making my PN symptoms worse, too.

I haven't gone to Potter yet but plan to. I have logistical issues as I have a 17 year old cat who I can't leave for more than one night, so I would have to get to NYC and back in two days. And, I can't sit, so I am thinking of the train (I live near Washington, DC).

I am sorry that your surgery with Prof. Robert did not work. I am afraid that any kind of trauma to this delicate nerve will result in scar tissue forming, so I am afraid of any tinkering, including CT guided nerve blocks. I had 2 of these and then stopped when I think they damaged the nerve.

I hope you are successful in titrating your Lexapro and wish you good luck. Keep on truckin. There may be some new developments on the horizon which will benefit all of us suffering from PN.

Bathsheba

[Violet M]

Sadie, you could also try contacting Judy Birch on this forum. http://www.pelvicpain.org.uk/index.php?page=about-us
She might be able to answer your question about Prof. Robert.

Best,

Violet

[sadie]

-Violet I went to the link and did not find anything on Judy Birch but did find an e-mail address info@pelvicpain.org.uk and i wrote to that address seeking info on both Judy and Prof Robert and i will PM Greg Thanks for the help
hugs Sadie

[Violet M]

Sadie, if you go to the bottom of that page she is listed as the editor of the website. If you don't hear back by contacting that e-mail address, you might be able to contact her on the message board. http://pelvicpain.healthunlocked.com/