Dr. Conway success getting better??

[Grammy]

Does anyone know if Dr Conway's success rate is getting better. In the past he was not mentioned as one of the better surgeons. I have had five pelvic floor operations and although doctor's tell me that I do not have a prolapse that is one of my worse symptoms--something is there and it is falling out. I saw Dr.Conway a couple of years ago and he said that he would give me a fifty percent chance of being fifty percent better. Those are not good odds and yet I have suffered every single day for seventeen years. Currently my nerves are so bad I am not sure I could do another surgery. I went to Mass General and had the worse nerve block ever. The doctor felt deep inside the vagina (I am post hysterectomy) and found two sore spots on either side of the upper vagina. Then she inserted what looked like a straw and found the spot again. through the straw like device she inserted a huge needle directly into the nerve and I have never experienced such severe pain in my life. It has caused a set back as the numbness in my foot is worse and my anxiety is through the roof. I just do not know what to do. I would love to know what people do when surgery fails. Is neuromodulation a good choice--and no one seems to have a pain pump. I am at a lost as I just do not have a life and I have tried so hard and endured such pain with the surgeries in the past. One last question will Dr.Potter accept a 3 tesler mri from a place like Mass Gen in Boston. Help me if you can Grammy

[Grammy]

Forgot to tell you that Dr Conway said that he would need to close the vagina for support. How about that? Gram

[Karyn]

Hi Gram,
I'm a patient of Dr. Conways. I can't speak for anyone else, but I consider the bilateral TG surgery I had with him a huge success. I've always been perplexed by your case. Especially the "falling out" feeling. That's usually a sign of prolapse, but you're saying there's no evidence of that. Prior to surgery, I had the feeling of something being "stuck up" the vagina.
From what I understand, Dr. Potter will not accept outside MRI's for readings. I would go directly to NY for the 3T. I have every confidence you'll get a better picture of what's going on with you. Your next steps will be much easier to determine.
I've had some pretty bad experiences at Mass General. Did you happen to visit the "Pelvic Floor Rehab Service" Department?
Warmest of regards,
Karyn

[nyt]

Dr. Potter can't use MRI's from other facilities that is because the area she scans is focused on known areas of pudendal entrapments so it is a smaller area with almost the same number of images as you would have for a regular Mri of the pelvis/abdomen. Not all MRI machines are created equal and I believe the MRI machine Dr. Potter uses was made by GE. If you can't travel she may work with the radiologist at MA General and then read the scan. I know she did that in one case but don't know if she would do it again. No harm in asking.

Wish you were feeling better. My plan, if the pudendal surgeries don't give me the relief I need/want then I will do neuromodulation. I may have to do it anyway because of the RSD in my legs but my regular pain specialist wants to wait until the pudendal surgeries are done. I would think someone at MA General should be able to do that for you. Just look around for a really good dr, ask questions of anyone you know that has chronic pain and see who they work with.

[Grammy]

Thank you for the advice. You must all remember that I have been at this for seventeen years and my life is basically a mess. I just want to go to bed and sleep all the time. Ironically I can sleep. The reason for the prolapse feeling is due to a weak pelvic floor. After the birth of my second son they pulled the uterus all but out. They attached the bladder to the uterus and pulled it straight up as tight as they could and tacked it to my abdominal wall. When I lifeted a heavy box I experienced pain and after a hysterectomy every thing just feel down. I ALWAYS feel like I want to put my finger into the vagina and push something up. Interestingly inserting a tampon that I have put into water does not take this feeling away nor does a pessary. I am leaning toward neurostimulation or a pain pump because I do not think I could do another surgery. I am just too worn out. I have no life seriously. I feel afraid all the time due to the constant irritation that I feel. I live in NH so going to Dr Conway would be easy for us but he only gave me a fifty percent chance of this helping me. I am discouraged beyond words. I feel like I have died and what is left is some shell of a person that on many days is useless. Simpe household chores are overwhelming for me. I am very surprised that there are not more members that have a pain pump or stimulator as these surgeries do not always work. Gram

[helenlegs 11]

Oh Grammy, I can understand how 17 years of this can make you feel so despondent. Sending you ((((( hugs ))))
I think a pain pump may be a good idea for you. If you are anything like me I NEED to have something positive to hold on to, a 'next step' to focus on to stay positive. If the surgery option is making you more unsure as the 50/50 chance of success given is too fine a ratio for you to deal with at the moment, so don't.
I have only been at this for 3 years but I also know that if the time comes when there is no 'next step' worth considering I will have to re evaluate my life and try to accept my limitations. I know there are books out there to help that I know others will recommend.
There are also a few people who have had considerable success with pain pumps but I am not in a position to advise you as I have had no experience. Just wanted to send you well wishes and more ((((hugs))))
Helen

[calluna]

Grammy, my heart goes out to you. Please know, you are not alone, and we are here to listen and help if we possibly can.

The book that helen mentions - I keep talking about this book! - it has helped me a lot, and I refer to it frequently. At the moment I am re-reading it. It is 'Coping Successfully with Pain' by Neville Shone. It is available on Amazon - here. If you look at the reviews on amazon uk - here - you will see that it really can make a difference. It was recommended to me by the psychologist I saw for help with pain management. Maybe it could help you too.

I am sure that helen is right about the surgical option. If you aren't happy with it - and the chances aren't that good - then take another route, one that you are comfortable with. With regard to a neurostimulator - this may well be further along the road for me. It has already been mentioned. Amanda knows a lot about this, as she has one.

Leave the housework. Rest, be kind to yourself.

I hope that things improve for you soon. Please keep posting!