I wish I could retitle this entire post "Progress and Regress with Dorsal Nerve Decompression", because all of the progress that I made in the six months after surgery with Dr. Dellon seems to have evaporated in the course of just 10 days. In the last week I have found my pain levels increasing and I have found myself having to rely on medication more and more. My dosages of Cymbalta and Gabapentin aren't what they were prior to surgery but they are getting up there. I just turned 40 the other day and it was a very difficult day. I have had suicidal thoughts of late, but thankfully I seem to have gotten over them for now with the help of family, friends and my dear dear girlfriend. She came into town for my birthday and managed to make at least parts of the day happy and joyous.
One thing that is hard to come to grips with is that the Gabapentin that I had been taking for years had really nasty side effects on my bowel movements. That is partially why I was so happy to have gone off Gabapentin 6 weeks ago and I was so happy that my GI system had returned to normal. Now I am facing having to deal with these same side effects of Gabapentin, perhaps for the rest of my life. That is difficult to contemplate. But for now I am soldiering through. Best to all of those who are in pain. My heart goes out to all of you. We have to hang in there.
Biker George
Progress with Dorsal Nerve Decompression
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Biker George
- Posts: 23
- Joined: Wed Sep 29, 2010 10:35 pm
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Progress with Dorsal Nerve Decompression
have you tried pregabalin at all? It is a more metabolised form of gabapentine and often has less side effects because of this. If you site side effects of gabapentin as a reason for a 'swap' to pregabalin/lyrica you may be successful. I hope that things go better for you in the near future.
Take care of yourself,
Helen
Take care of yourself,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: Progress with Dorsal Nerve Decompression
Biker George, how are you doing? Hope that it was only partial relapse and you overcame it...
Thinking about you and the others recovering from dorsal nerve surgery, because I am the next candidate...
wishing all the best, keep the strength buddy
Thinking about you and the others recovering from dorsal nerve surgery, because I am the next candidate...
wishing all the best, keep the strength buddy
summer 2009 - episodic post ejaculatory pain,
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
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Biker George
- Posts: 23
- Joined: Wed Sep 29, 2010 10:35 pm
Re: Progress with Dorsal Nerve Decompression
Thanks for asking about me. Well, I have good news and bad news. The good news is that returning to PT made a difference. I have gotten my pain levels back down somewhat, and I have lowered my Gabapentin dosage such that my GI system is back to normal again. Hooray! I haven't even been to PT since June 29 and I still feel better. Nowhere near 100%, and I don't sit very much, but at least my GI system is back to normal. Also, I have some homework to do with a dilator to help me relax my pelvic floor muscles, and I'm not exactly looking forward to that. But I have to try. The bad news is that my mom passed away suddenly on July 1. She had been undergoing chemotherapy for multiple myeloma, which had set her back a bit. However, she had been doing better, regaining her strength, eating regularly, seeing friends, and returning to a more normal routine. However she came down with an infection that progressed very quickly. She felt pain in her leg on Friday afternoon June 29, she was hospitalized on the morning of Saturday June 30 and she passed away less than 24 hours after being hospitalized. Luckily I was able to make it to the hospital to see her before she passed away (I live 4 hours away), but as anyone who has lost a close relative knows, it is extremely trying. I am trying to focus on the positive, but I am kind of day-to-day at this point.
Anyway thanks for asking about me and stay optimistic about your surgery.
Anyway thanks for asking about me and stay optimistic about your surgery.
Re: Progress with Dorsal Nerve Decompression
Biker George,
So very sorry to hear of you Mom's passing. My Mom died of the same in 1990, but I still miss her and it was a hard loss. My best to you and your family during this time. Glad to know PT is helping. The diolater is difficult they gave me two and I have not done well with either the pelvic floor or rectal but have to try again for the place in between. I am doing better with an elevator exercise for the pelvic floor. I will check to see if the handout has a write-up for you. Good luck to you.
Janet
So very sorry to hear of you Mom's passing. My Mom died of the same in 1990, but I still miss her and it was a hard loss. My best to you and your family during this time. Glad to know PT is helping. The diolater is difficult they gave me two and I have not done well with either the pelvic floor or rectal but have to try again for the place in between. I am doing better with an elevator exercise for the pelvic floor. I will check to see if the handout has a write-up for you. Good luck to you.
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Progress with Dorsal Nerve Decompression
So sorry about the sad news about your Mum BG, grief and sudden emotional turmoil is so exhausting. Well done tho' ,your positive focus has got to help.
I was happy to hear about the PT and med regime, long may that continue and improve of course.
Take care,
Helen
I was happy to hear about the PT and med regime, long may that continue and improve of course.
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: Progress with Dorsal Nerve Decompression
Biker George, I feel so sorry for you and your mom. My mom is also seriously ill and I know how devastating these things could be. Stay with your relatives, you are surely not alone and there will be better days there.
I am glad that at least your health condition is little better.
m.
I am glad that at least your health condition is little better.
m.
summer 2009 - episodic post ejaculatory pain,
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
Re: Progress with Dorsal Nerve Decompression
Biker George,
The pelvic floor elevator exercise handout did not have many words but I will try to explain so you can ask your PT about it. I would not try anything without PT approval for we are all at different stages but this may help while you figure out the diolator. I was told to hold in the pelvic floor muscles a third the way for 3seconds then two- thirds for 3 seconds then all the way 3 seconds then you release a third and hold 3 seconds the other third 3 seconds then a full release (inhale exhale helped with that) and relax 5 seconds. Repeat 10 times for 1 set a day. Take Care
Janet
The pelvic floor elevator exercise handout did not have many words but I will try to explain so you can ask your PT about it. I would not try anything without PT approval for we are all at different stages but this may help while you figure out the diolator. I was told to hold in the pelvic floor muscles a third the way for 3seconds then two- thirds for 3 seconds then all the way 3 seconds then you release a third and hold 3 seconds the other third 3 seconds then a full release (inhale exhale helped with that) and relax 5 seconds. Repeat 10 times for 1 set a day. Take Care
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Re: Progress with Dorsal Nerve Decompression
Hello George
I hope this finds you better than your last posts.
Ifound your post and I am trying to find a surgeon that does clitoral branch/dorsal nerve decompression surgery in women.
Howdidyou find a surgeon with good success stats for their surgery.
Sorry to bother you George and hope you are OK.--god bless.
lexie----san francisco.
I hope this finds you better than your last posts.
Ifound your post and I am trying to find a surgeon that does clitoral branch/dorsal nerve decompression surgery in women.
Howdidyou find a surgeon with good success stats for their surgery.
Sorry to bother you George and hope you are OK.--god bless.
lexie----san francisco.
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PN_down_under
- Posts: 31
- Joined: Sat Jun 11, 2011 6:26 am
Re: Progress with Dorsal Nerve Decompression
Hi BikerGeorge
Been a couple of months since your last update, so hopefully you have overcome a temporary flare-up. Has Dr Dellon given anymore consideration to your recovery and potential reasons or secondary solutions?
Regarding your post about doctor definition of surgery success, I totally agree. After detailing my 9 month recovery symptoms post dorsal decompression, based soley on my increase in walking ability from 15 minutes to up to 30 minutes, the doctor exclaimed "success"! <rolls eyes> This is completely ignoring the fact that the pain is still there, that all other physical activity is pretty much not doable, and that any sitting still illicits perineum pain! Success is obviously in the eye of the beholder...
Not that it helps the situation too much, but I also concur with the rant about cycling dangers. I knew about it, but also thought it was simply a blood flow issue, as that is all it is ever termed as (some bike companies actually test blood flow to the bits as a determiner of saddle rightness). I thought, "okay, in the unlikely event that I start getting warning signs of ED issues I can simply stop riding and all will revert back to normal". Of course the reality for me was, no problems or warning signs at all for two years and then one day 'bang', life ruined.
I hope your days are improving.
Been a couple of months since your last update, so hopefully you have overcome a temporary flare-up. Has Dr Dellon given anymore consideration to your recovery and potential reasons or secondary solutions?
Regarding your post about doctor definition of surgery success, I totally agree. After detailing my 9 month recovery symptoms post dorsal decompression, based soley on my increase in walking ability from 15 minutes to up to 30 minutes, the doctor exclaimed "success"! <rolls eyes> This is completely ignoring the fact that the pain is still there, that all other physical activity is pretty much not doable, and that any sitting still illicits perineum pain! Success is obviously in the eye of the beholder...
Not that it helps the situation too much, but I also concur with the rant about cycling dangers. I knew about it, but also thought it was simply a blood flow issue, as that is all it is ever termed as (some bike companies actually test blood flow to the bits as a determiner of saddle rightness). I thought, "okay, in the unlikely event that I start getting warning signs of ED issues I can simply stop riding and all will revert back to normal". Of course the reality for me was, no problems or warning signs at all for two years and then one day 'bang', life ruined.
I hope your days are improving.