surgery date 2nd june nantes

well there you have it my date for surgery, just hoping i am making the right decision, i am always worried i will end up worse than before, but at the end of the day i wont know until i have it, its a choice you just have to make and stick to!

andreax

19 Replies

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  • That's great news! Not too long to wait but enough time to get everything together for your surgery. Good luck I will be keeping my fingers crossed it is a success for you x

  • Good Luck to you...please let us all know how you get on. It's natural to have these thoughts, but stay positive...you are in professional hands.

  • That's great news. You have to try and do something as we have very little options available to us with this kind of pain. I sincerely wish the very best outcome for you . Think positive and stay strong .

  • Good luck, it's hard trying to live with this condition, if you don't try everything possible, you'll never know if it would have helped. Xxx.

  • thanks to you all, your lovely emails are making me feel more confident and determined, its always nerve wracking having surgery and more so when you are having it in a strange country where your knowledge of the language is very limited

    andreax

  • Good luck with the surgery x

  • Good luck! Remember to keep a journal. That really helped me reflect back when I needed to see small changes. 5 1/2 weeks seems to be when the Nerves calm down after surgery. Save your Percocet for right before bedtime when you really need it. Try to stick to a clean diet . Lots of (green)vegetables, good fats(olive oil, coconut oil), one fruit a day, and a little protein and rice. You will heal better on a good diet. Have nice mood music in your house and lots of TV movies ready. Have a pincher grabber to pick things off the floor. The first two weeks don't do anything. Avoid stairs, any bending, learn to roll off the bed and push up with hand, get up once an hour to avoid blood clots, keep your pain killers and medicine in bathrobe so if you do go downstairs you don't go back upstairs for medicines. Always write down medicines you take during the day . You will forget. Have ice packs made before you return home and a heating pad ready. If you need to take your attention off pain have someone put two cold cans under your feet you can roll with your feet for comfort, move an icepack around your body to get your brain to focus on something else as well as a heating pad. Having foot massages helps and cranial massages. Ask for help!

    My husband , kids, siblings, parents, in laws , and friends talked to me and helped me get through it. Letting go and using prayer every night and meditation focusing on your breath helped. Use all the tools in your toolbox.

  • thats a fabulous email for me, i will keep a journal and try a lot of the things you have suggested, having had this surgery before on only one side, i know it takes a while for the nerves to settle and for the pain flare to settle down, i already take a lot of pain meds, so i am ready to up them for a while

    andrea

  • Hi Susan 1-2,

    I just read a post you wrote about 4 months ago (?)... it was about your 3rd nerve block failing, and you were wondering if you should consider surgery.

    Reading the above post, it sounds as though you have had surgery. Is that right?

    I hope you don't mind me asking, has it been successful for you?

    I have a friend on this site, Fiona, 2cv64. She posted monthly following her surgery in Nantes, and recently was told that it hadn't been successful.

    I would LOVE to hear a success story, truly, and I am sure it would reassure our friend chillijava before her surgery.

    Is it cheeky of me to ask if you could please write one...?

    Don't worry if I am asking too much, but I have only ever read negative reviews.

    Anyway thank you for this wonderful positive post, and your "lollipop" one which I also found. Your writing is like a ray of sunshine!

    Best wishes,

    SuzyQ

    Sue xx

  • I consider my surgery a success. What does success mean? Well prior to surgery the pain was UNBEARABLE. Every day I had to talk myself out of taking a knife and cutting open the area. I begged my husband a couple times to cut the area open and I drove myself to the hospital and begged them to do the same or I told them I was going to do it. I could not focus on anything but the pain. I could not take medication and work. So, I was headed toward disability. I can not afford to lose my job as I have a daughter with a disability who will need financial assistance in the future . So, the information I read about this problem looked less than promising. People are on medications that don't work with numerous side effects, neurostimulator aren't working for many, physiotherapy definitely not working, nerve blocks limited, radio frequency pulse 4 days of numbness, and I was getting worse day by day. My personality was changing as I kicked the wall every day and was swearing to get rid of my anger. I could barely sit for 10 seconds, no longer sleep, sweating all day and breathing heavy, and ending up in the hospital for pain management. The only thing that worked was the nitroglycerin but it lowered my blood pressure. My normal blood pressure was 90/60 of course would climb out of control during severe pain.

    I thought they needed to get to the root of the problem. Not a bandaid.

    So, 7 weeks after surgery I returned to work. Probably should have waited till 8 weeks. I have a better life now. I do have flares off and on but if I rest a bit it stops. The pain stays in the obteratur muscle. I have a spasm off and on. I am still healing so I don't know how much better it will get. I can sit all the time now and sleep at night. I can bend and exercise now but I go slow. If you read some of my posts I could not walk up an incline before surgery. I stay away from lifting. I am 16 weeks post op and I will begin swimming for exercise now starting tomorrow. I worked on postural exercises the last couple of months. I am not the same physically as before the onset of pain and I am not sure if I will ever be . But, for me it was the only way. My surgeon found the trapped and injured nerves. Would these nerves ever calm down without surgery I don't know. I think we all have different stories so not sure if we will all turn out the same. The day of surgery I was calm and knew I made the right decision. My brother helped me make the decision.

    I love the word "cheeky". It's interesting to hear you all talk across the ocean. Love it!

  • Thank you so much for this; what a sweetheart you are to share so freely and honestly.

    This condition is a monster.

    I have a sacral neurostimulator, but am struggling with the site where they implant the computer and battery.

    At the moment I can't sit down on it, or lie on that side. Initially it helped, but a train journey up to London and back before Christmas caused a setback.

    Then my Dad died; 3 weeks ago today.

    I am overwhelmed by pain and grief.

    Thank you so much for your lovely report, I wish you continued healing and a full life ahead.

    Best wishes,

    Sue xx 😊xx

  • Hi Susan,

    Thank you so much for sharing your story so freely. It's very encouraging to hear a positive outcome. Really happy to know if worked out for you.

    I'm in touch with Andrea who's going for her surgery and I think your story will surely encourage her.

    Thank you so very much for sharing your story.

    Regards

    Raj

  • To all my fellow suffers some of you I have gotten to know pretty well. First, let me first say Susan I know and I'm sure most of us do exactly how you were feeling. There have been many times I've thought of just giving up. Many nights my prayers weren't to help me get better and give me the strength to deal with the prison of the pain we all live in but to rather take away my pain by taking me. I've become a very mean and unbearable person to be around the last few months. For me to share this with all of you is taking a lot also. I have always considered myself a fighter and have said I would never let this beat me. But it's kicking my butt lately. I don't sleep, I'm mean, the pain literally is driving me to the point where it is all I think about. Nothing seems to help anymore, I'm getting no relief with everything I try and far worse everyday. I can only hope that my next source of treatment will help me for I fear what is next to come. I know one thing. I do not want to live in this pain anymore. I try to remember what it use to be like without this pain and I can't remember a day when I didn't have it. Then I remembered one day. It was my high school graduation believe it or not that was the only day that came into my mind recently and it reminded me of my gram who passed away in 1991. I was class valedictorian and I had to give the speech and In my speech I used a quote from William Wordsworth. I wanna share that with all of you. " what though the radiance that was once so bright, be now forever taking from my sight. Though nothing could bring back the hour of splendor in the grass, the glory of the flower, we will grieve not, but rather find strength In what remains behind. " That day I feel my gram made me see a little glory of the flower and splendor in the grass. So, when I have those feelings and I know I'm not the only one out there who feels like this, please remember find the strength. I have to. Thank you for this site and the friends I have made. All the brace women and men who share there courageous stories on here and all that they have been through. I truly appreciate all of you and hope one day we all can be painfree from the monster.

    Xoxo Deb🦋🙏❤️😿

  • That's supposed to say brave women and men. Oops Deb

  • I will pray for all the doctors that they may be given the knowledge to heal our pain. I will pray for all of you that you find the strength to get through this difficult time. It was a blessing to find this site and be amongst people who understand the anguish and desperation to find answers . This illness is beyond words. We are our own advocates. We must choose the treatment that makes the most sense and will work for our lives. My hope is that I have helped someone with my own story. God Bless you all💐

  • Thank you so much Susan for your love, prayers and encouragement.

    It is such a difficult path to travel, so it certainly helps to know that we are not alone.

    Many blessings to you too.

    With love, Sue xx

  • Hi Chillijava,

    I have read that Prof.Robert is retiring in Nantes. Is there any other surgeon who operates on pudendal nerve?

  • i dont know if he is retiring, thats news to me, i will ask when i go

    andrea

  • well my hotel and flights are booked, and all my papers have been sent to nantes and i am now booked in for surgery, i will be admitted at 4.30pm on the 31st may, to have surgery the next morning the 1st june and hopefully out on the 3rd june, i will also be having a pre op on the 29th may in nantes, so all set

    andreaxx

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