That all sounds great, Tony. Given all that the surgeons had to do (and on both sides), I don't think it's surprising that you are still at a pain level higher than before the surgery. It's nice that Dr. Plateau's staff has been helpful with your work release paperwork. Thanks for keeping us posted!
April
Big News - Surgery Scheduled in France 12/6/2018
Re: Big News - Surgery Scheduled in France 12/6/2018
Week 7 after Surgery:
I am seeing some improvement in the post surgical pain. I am moving around better, but still can't sit at all. I have two new areas of pain since the surgery. One is in my groin. which makes no sense at all. That pain is the worst non-sitting pain I have right now. I am truly baffled by this. When I mentioned this several times to the doctor who did the surgery he said, give it time. My scars and surgical wounds are almost completely healed now. I tried sitting today to see if I could drive to the hardware store. No luck, even with a thick foam pillow. Just a minute or two and i had to get up.
I hate being dependent on others for simple tasks like driving. Right now I have to lay down in the passenger seat. But I am able to do some of my light hobby stuff in the garage and I am working my regular from home part time. (Thank goodness they agreed to this). My hobby is restoring and repairing wrist watches. Cheap plug here, my eBay store is here https://www.ebay.com/str/watchtimela and my YouTube Channel is here - https://www.youtube.com/watchtimela. The good thing is this hobby doesn't require ANY sitting. I had a custom workbench made in my garage to accommodate my standing and height. I also started a website and the entire story is here - http://www.watchtimela.com/about-watch-time-la.html. No more plugs, I promise.
Until next time . . . .
I am seeing some improvement in the post surgical pain. I am moving around better, but still can't sit at all. I have two new areas of pain since the surgery. One is in my groin. which makes no sense at all. That pain is the worst non-sitting pain I have right now. I am truly baffled by this. When I mentioned this several times to the doctor who did the surgery he said, give it time. My scars and surgical wounds are almost completely healed now. I tried sitting today to see if I could drive to the hardware store. No luck, even with a thick foam pillow. Just a minute or two and i had to get up.
I hate being dependent on others for simple tasks like driving. Right now I have to lay down in the passenger seat. But I am able to do some of my light hobby stuff in the garage and I am working my regular from home part time. (Thank goodness they agreed to this). My hobby is restoring and repairing wrist watches. Cheap plug here, my eBay store is here https://www.ebay.com/str/watchtimela and my YouTube Channel is here - https://www.youtube.com/watchtimela. The good thing is this hobby doesn't require ANY sitting. I had a custom workbench made in my garage to accommodate my standing and height. I also started a website and the entire story is here - http://www.watchtimela.com/about-watch-time-la.html. No more plugs, I promise.
Until next time . . . .
Middle aged male suffering excruciating pain from pudendal neuralgia since 2013. Tried nerve blocks, caudal block, back surgery, and a dozen different medications. Surgery 2018. My condition grows worse every month. Can not sit at all.
Re: Big News - Surgery Scheduled in France 12/6/2018
Hi Tony,
Just wanted to give you a word of hope here because it was a real roller coaster after my surgery too. I was worse initially after surgery too so I understand the fear associated with that. The recovery process seemed like it took forever too and it was many months before I could sit much. So please remember to take it easy and don't try to do too much at first. it is encouraging that you are seeing some improvements, even if they are minor.
Violet
Just wanted to give you a word of hope here because it was a real roller coaster after my surgery too. I was worse initially after surgery too so I understand the fear associated with that. The recovery process seemed like it took forever too and it was many months before I could sit much. So please remember to take it easy and don't try to do too much at first. it is encouraging that you are seeing some improvements, even if they are minor.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Big News - Surgery Scheduled in France 12/6/2018
Thanks for the update, Tony. I had surgery (a much less complicated surgery and just on one side) at about the same time you did, and I recently had a two-day uptick in my pain as well. I had to ice most of the time. Today is better, though, so it does seem to be a bit of a roller coaster, as Violet said. Thanks for the info on your hobbies and blog!
April
April
Re: Big News - Surgery Scheduled in France 12/6/2018
Well, here we are at the 3 ½ month mark. I wish I had better news to reports, but I really don’t feel any better than I did a month ago. As I stated then, my pain is still much worse than before surgery, and I have a couple of new pains since the surgery. Of course, I am better than the first 30 days, but boy is this going slow.
I have been in contact with Dr. Plateau in Nantes France who did the surgery. He still thinks it is way too early and said that since my case was so difficult, it may be more than the original six months he estimated to get back to my baseline pain. I can tell you I have never wished time to pass more quickly than I do now.
I am fortunate to have a great wife and support system, including my work that has allowed me to work from home for the duration. While I am still confident I went to the right place, I must admit there are times when I wonder if I made the wrong choice to have this surgery done at all. I guess only time will tell.
In any event, I promised I would keep everyone informed. If anyone has any pointers on things that may speed up the recovery, like exercises, stretches, etc., please let me know. Also, If you have your own results and recovery time to share that would be helpful as well. Thank you.
I have been in contact with Dr. Plateau in Nantes France who did the surgery. He still thinks it is way too early and said that since my case was so difficult, it may be more than the original six months he estimated to get back to my baseline pain. I can tell you I have never wished time to pass more quickly than I do now.
I am fortunate to have a great wife and support system, including my work that has allowed me to work from home for the duration. While I am still confident I went to the right place, I must admit there are times when I wonder if I made the wrong choice to have this surgery done at all. I guess only time will tell.
In any event, I promised I would keep everyone informed. If anyone has any pointers on things that may speed up the recovery, like exercises, stretches, etc., please let me know. Also, If you have your own results and recovery time to share that would be helpful as well. Thank you.
Middle aged male suffering excruciating pain from pudendal neuralgia since 2013. Tried nerve blocks, caudal block, back surgery, and a dozen different medications. Surgery 2018. My condition grows worse every month. Can not sit at all.
Re: Big News - Surgery Scheduled in France 12/6/2018
Thank you for you update Tony. I wish you the best of luck of recovery.
I didn't have the surgery yet, but I went to a lot of PT and Chiro, and some of the stretch make me feels better.
I think you may knew them all already, but i just feel like to share them with you anyway.
1) lying down hamstring stretch: https://goo.gl/images/EszDRg
2) lying down adductor stretch : https://goo.gl/images/m4haUj
3) lying down hip stretch: https://goo.gl/images/QXgrVU
4) lying down piriformis stretch: https://goo.gl/images/DxmCdA
5) obturator internus stretch: https://goo.gl/images/3TDxX9
hang in there and feel better.
P.S. I try to do all my stretch lying down, because i feel more relax in my pelvis this way.(I am lazy
)
Edit: foam roller is also a good choice to try, but with your recent surgery, it may to so painful for you.
I didn't have the surgery yet, but I went to a lot of PT and Chiro, and some of the stretch make me feels better.
I think you may knew them all already, but i just feel like to share them with you anyway.
1) lying down hamstring stretch: https://goo.gl/images/EszDRg
2) lying down adductor stretch : https://goo.gl/images/m4haUj
3) lying down hip stretch: https://goo.gl/images/QXgrVU
4) lying down piriformis stretch: https://goo.gl/images/DxmCdA
5) obturator internus stretch: https://goo.gl/images/3TDxX9
hang in there and feel better.
P.S. I try to do all my stretch lying down, because i feel more relax in my pelvis this way.(I am lazy
)Edit: foam roller is also a good choice to try, but with your recent surgery, it may to so painful for you.
Re: Big News - Surgery Scheduled in France 12/6/2018
Hi Tony,
I had surgery around the same time as you but I went to Dr Bautrant in Marseille. I can't even comprehend how you managed the journey all the way home, I only did the flight from to the England and that was bad enough. I have started to feel a bit better since physio and my husband helps me with a lot of it. I was very disheartened like you though with good days and bad days and I am not soft either like you I am a consider myself to be a tough cookie. I thought I would be driving by now but I started back at work but on a part time basis 4 hours a day and then I have had enough and they have also got me a stand up desk and I still sit on a cushion but at least my legs will bend now so I can sit but because I haven't sat properly for nearly 3 years my stomach muscles are hurting a lot, but my physio giving me exercises to help that. I think people's comments don't help either " can you not sit down yet" but I am getting there and you will to. I can even lie with my legs flat in bed now which I couldn't before because the nerve was so trapped that I had to lie with pillows under my knees and lots of foam on my mattress.
I have a muscle roller that my physio told me about has helped my legs a lot.
Day by day you will improve and just don't try to rush it like my husband keeps telling me and I think I am getting there slowly and you will to. I am now a few inches taller because I used to be in that much pain that I was always hunched over my pc at work and now people can't believe I was always that tall.
I hope you are still keeping positive and if I can help you with anything just ask.
I had surgery around the same time as you but I went to Dr Bautrant in Marseille. I can't even comprehend how you managed the journey all the way home, I only did the flight from to the England and that was bad enough. I have started to feel a bit better since physio and my husband helps me with a lot of it. I was very disheartened like you though with good days and bad days and I am not soft either like you I am a consider myself to be a tough cookie. I thought I would be driving by now but I started back at work but on a part time basis 4 hours a day and then I have had enough and they have also got me a stand up desk and I still sit on a cushion but at least my legs will bend now so I can sit but because I haven't sat properly for nearly 3 years my stomach muscles are hurting a lot, but my physio giving me exercises to help that. I think people's comments don't help either " can you not sit down yet" but I am getting there and you will to. I can even lie with my legs flat in bed now which I couldn't before because the nerve was so trapped that I had to lie with pillows under my knees and lots of foam on my mattress.
I have a muscle roller that my physio told me about has helped my legs a lot.
Day by day you will improve and just don't try to rush it like my husband keeps telling me and I think I am getting there slowly and you will to. I am now a few inches taller because I used to be in that much pain that I was always hunched over my pc at work and now people can't believe I was always that tall.
I hope you are still keeping positive and if I can help you with anything just ask.
Re: Big News - Surgery Scheduled in France 12/6/2018
P.s
Also I was told that a lot of the pain after the operation can come from myofasial because the muscles have been protecting the nerve for so long and you tense up with the pain and it's the levator ani muscles that your physio should be concentrating on. So my physio works on the trigger points inside me & me and my husband work on the outside.
Also my physio told me to do pelvic pain release meditation which I thought would be a load of crap because I am not into things like that. It is actually amazing and I found one a video on YouTube for ten minutes a day and it does really help to relax everything down there and stops you from tensing up everything which we do without realising
Hope this helps
Also I was told that a lot of the pain after the operation can come from myofasial because the muscles have been protecting the nerve for so long and you tense up with the pain and it's the levator ani muscles that your physio should be concentrating on. So my physio works on the trigger points inside me & me and my husband work on the outside.
Also my physio told me to do pelvic pain release meditation which I thought would be a load of crap because I am not into things like that. It is actually amazing and I found one a video on YouTube for ten minutes a day and it does really help to relax everything down there and stops you from tensing up everything which we do without realising
Hope this helps
Re: Big News - Surgery Scheduled in France 12/6/2018
Month 5:
Here I am approaching the five-month mark after my surgery in France. I honestly do not think I have seen any improvement in the last two months except for a week or so where the pain abated a bit. Keep in mind I am talking about new pain that I never had before surgery. The post-surgical pain is still the same or worse. This new pain in the groin area is much worse than any of the original pain. I have been to several doctors here in the states for follow-ups. The surgical sites are almost completely healed. There is nothing visible anywhere that can explain this new pain. The doctors just shrug.
At this point, I am starting to really contemplate the fact I have made things worse, much worse. I am not sure what to do from here except see what happens. But from someone who has recovered from open heart, spine and brain surgeries in record time, it seems this should have resolved somewhat by now. I still can't drive to work, so still disabled.
Not a good outcome at this point in time. To be continued . . .
Here I am approaching the five-month mark after my surgery in France. I honestly do not think I have seen any improvement in the last two months except for a week or so where the pain abated a bit. Keep in mind I am talking about new pain that I never had before surgery. The post-surgical pain is still the same or worse. This new pain in the groin area is much worse than any of the original pain. I have been to several doctors here in the states for follow-ups. The surgical sites are almost completely healed. There is nothing visible anywhere that can explain this new pain. The doctors just shrug.
At this point, I am starting to really contemplate the fact I have made things worse, much worse. I am not sure what to do from here except see what happens. But from someone who has recovered from open heart, spine and brain surgeries in record time, it seems this should have resolved somewhat by now. I still can't drive to work, so still disabled.
Not a good outcome at this point in time. To be continued . . .
Middle aged male suffering excruciating pain from pudendal neuralgia since 2013. Tried nerve blocks, caudal block, back surgery, and a dozen different medications. Surgery 2018. My condition grows worse every month. Can not sit at all.
Re: Big News - Surgery Scheduled in France 12/6/2018
I have followed your surgical journy Tony and am so sorry to hear you are not better yet, and in fact worse. That's devastating news. I cant imagine how terrible that must feel after all the research and travel. But give it time. Some of these pains could slowly dissipate over time. My only experience with nerve surgery took a year to get better and I had written it off as a failure. So I assume the doctor is telling you to give it time? And explanation as to why that groin pain has appeared? I dont know what else for you to do but hang in there. Our prayers are with you.