Progress with Dorsal Nerve Decompression
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- Posts: 23
- Joined: Wed Sep 29, 2010 10:35 pm
Re: Progress with Dorsal Nerve Decompression
Thanks. To his credit, Dr. Dellon replied very quickly to my e-mail. He indicated that since I have come this far there shouldn't be any scar tissue forming unless I re-injure the nerve. (Which I haven't.) Hopefully the nerve is just more sensitive as it continues to regenerate. Thanks for the support.
Re: Progress with Dorsal Nerve Decompression
I am sorry for your relapse and I hope it is temporary seeing your ongoing progress. I commend you for contacting Dr.Dellon and I think it is imperative for all of us that had dorsal nerve surgery to contact and give feedback to our surgeons. Our post surgery stories are eerily similar.
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
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- Posts: 23
- Joined: Wed Sep 29, 2010 10:35 pm
Re: Progress with Dorsal Nerve Decompression
Thanks, Ezer. I appreciate it. I had seen your name before but I didn't recall that you had had surgery with Dr. Dellon. I looked through some of your old posts to refresh my recollection. Boy, that Dr. Dellon thread is pretty darn depressing. My thoughts as of now:
1. One area where we could use improvement is the terminology that doctors use to describe the effectiveness of their treatments. After my surgery, Dr. Dellon said that I should have an "excellent" result. To me, an "excellent" result would be 90% improvement or better. When I came out of surgery, I envisioned being virtually pain free, being able to sit without a cushion, returning to physical activity, etc. I'm still a long way from that. I'm pleased with my progress so far, but I was hoping (and still am hoping) for a lot more. Now that I've looked through some older posts, Dr. Dellon like other doctors seems to use a definition of "excellent" which might be at odds with the average patient's expectations. I don't expect doctors to be miracle workers, but if they are talking people into having risky surgery at great financial cost, there should be more transparency/better understanding.
2. At this point I am still very glad that I had the surgery. As I reported earlier, I felt an immediate improvement in blood flow so the fibrotic tissue was certainly a problem as far as blood flow was concerned. I also experienced a lot of pain when bending, stretching, squatting, etc., and I'm convinced that removing the fibrotic tissue removed that entrapment. I experience far less pain than I used to. So in that sense removing the fibrotic tissue was the right thing to do.
3. I'm still off of medication, which is a great thing.
4. I'm thinking/hoping that some of the discomfort that I experience is nerve regeneration and/or the nerve getting used to its new surroundings. I see posts that say that by this time (nearly 7 months out) the nerve regeneration should be over. I certainly hope not.
5. I'm going to start physical therapy again. It didn't yield much benefit before surgery, but if the fibrotic tissue was indeed the problem, then it would make sense that the PT wouldn't have any long term effect. I'm hoping that nerve gliding/flossing techniques might help. Who knows but it's worth a try IMHO.
6. This sucks. (Not that we don't know.)
7. To all the bikers out there, have you (like I) wondered why we have so many warning labels on every consumer product under the sun (hair dryers, lawn mowers, video games, etc.) but we have no warnings whatsoever with bicycles and conventional bike saddles? I've second-guessed my decisions oh so any times over the years, and I wish that I had been better educated about the subject, but reading about biking etc. I always thought that what it caused was ED and I always thought that was a blood flow issue. I never had any idea of the importance of the pudendal nerve and its course through the perineum, nor that I was risking permanent nerve damage every time that I got on a bike. I have a fair amount of anger at myself, but I also have a fair amount of anger for the cycle club that taught me all about how to spend hours at a time on a bike but never once to learn about this important part of human anatomy. Argh. I could go on for a while and I know I'm venting but sometimes you just have to do that. And my family and loved ones only deserve to put up with so much.
1. One area where we could use improvement is the terminology that doctors use to describe the effectiveness of their treatments. After my surgery, Dr. Dellon said that I should have an "excellent" result. To me, an "excellent" result would be 90% improvement or better. When I came out of surgery, I envisioned being virtually pain free, being able to sit without a cushion, returning to physical activity, etc. I'm still a long way from that. I'm pleased with my progress so far, but I was hoping (and still am hoping) for a lot more. Now that I've looked through some older posts, Dr. Dellon like other doctors seems to use a definition of "excellent" which might be at odds with the average patient's expectations. I don't expect doctors to be miracle workers, but if they are talking people into having risky surgery at great financial cost, there should be more transparency/better understanding.
2. At this point I am still very glad that I had the surgery. As I reported earlier, I felt an immediate improvement in blood flow so the fibrotic tissue was certainly a problem as far as blood flow was concerned. I also experienced a lot of pain when bending, stretching, squatting, etc., and I'm convinced that removing the fibrotic tissue removed that entrapment. I experience far less pain than I used to. So in that sense removing the fibrotic tissue was the right thing to do.
3. I'm still off of medication, which is a great thing.
4. I'm thinking/hoping that some of the discomfort that I experience is nerve regeneration and/or the nerve getting used to its new surroundings. I see posts that say that by this time (nearly 7 months out) the nerve regeneration should be over. I certainly hope not.
5. I'm going to start physical therapy again. It didn't yield much benefit before surgery, but if the fibrotic tissue was indeed the problem, then it would make sense that the PT wouldn't have any long term effect. I'm hoping that nerve gliding/flossing techniques might help. Who knows but it's worth a try IMHO.
6. This sucks. (Not that we don't know.)
7. To all the bikers out there, have you (like I) wondered why we have so many warning labels on every consumer product under the sun (hair dryers, lawn mowers, video games, etc.) but we have no warnings whatsoever with bicycles and conventional bike saddles? I've second-guessed my decisions oh so any times over the years, and I wish that I had been better educated about the subject, but reading about biking etc. I always thought that what it caused was ED and I always thought that was a blood flow issue. I never had any idea of the importance of the pudendal nerve and its course through the perineum, nor that I was risking permanent nerve damage every time that I got on a bike. I have a fair amount of anger at myself, but I also have a fair amount of anger for the cycle club that taught me all about how to spend hours at a time on a bike but never once to learn about this important part of human anatomy. Argh. I could go on for a while and I know I'm venting but sometimes you just have to do that. And my family and loved ones only deserve to put up with so much.
- helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Progress with Dorsal Nerve Decompression
I wouldn't beat yourself up about this too much Bikergeorge. I'll bet that even if you did have a vague inkling of a connection and loved the sport it would then be an 'it won't happen to me' thing. Even if that is not the case this IS the place to vent . We really do have a fair bit to VENT!!! about
Take care,
Helen
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 am with you on the description of success and improvement being different from doctor and patient. I had another disconnect with not understanding supposedly I should go back to work in 4 week.s but recovery is a year and be patient. I am almost to the year and can sit longer than before surgery but have issues bending, squatting and lifting over 2 pounds? Then of course with the cut ligament certainly no twisting especially combined with lifting! I am grateful I am not 24/7 at pain level 10 in bed but did and like you still hope more recovery is on the way. Not sure I had a choice to avoid the excessive sitting since it was my way to deal with chronic foot pain but maybe if I had known I could have split the time better, anything to avoid this condition. That is in the past and we can vent and still go forward to better days ahead.
Ohh yeah wheen I got bunions at age 21 the doctor said with the sitting I would only have to worry about "secretarial spread" he never mentioned PNE!
Take Care,
Janet
I am with you on the description of success and improvement being different from doctor and patient. I had another disconnect with not understanding supposedly I should go back to work in 4 week.s but recovery is a year and be patient. I am almost to the year and can sit longer than before surgery but have issues bending, squatting and lifting over 2 pounds? Then of course with the cut ligament certainly no twisting especially combined with lifting! I am grateful I am not 24/7 at pain level 10 in bed but did and like you still hope more recovery is on the way. Not sure I had a choice to avoid the excessive sitting since it was my way to deal with chronic foot pain but maybe if I had known I could have split the time better, anything to avoid this condition. That is in the past and we can vent and still go forward to better days ahead.
Ohh yeah wheen I got bunions at age 21 the doctor said with the sitting I would only have to worry about "secretarial spread" he never mentioned PNE!
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
Hey George, I got PNE from exercising too so I know the feeling -- wishing I could go back and relive that part of my life and do things differently. The amazing thing is my husband and son are both huge cycling fans and even though they've seen everything I went through I cannot get them to stop! We tend to have a sense of invincibility until it happens to us.
Well, I'd love to say you are going through a temporary flare-up phase but it's impossible to know for sure. We're all here behind the scenes hoping for the best possible outcome for you - one that you can call excellent in the end.
Violet
Well, I'd love to say you are going through a temporary flare-up phase but it's impossible to know for sure. We're all here behind the scenes hoping for the best possible outcome for you - one that you can call excellent in the end.
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.
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Re: Progress with Dorsal Nerve Decompression
Had a tough day again today. Am going back on Cymbalta (30 mg) and Gabapentin. Hopefully only temporarily on the latter. Discomfort level increasing without a corresponding explanation. (Although I did play roadie of sorts for a large musical gig yesterday, so maybe that was the reason.) I've been suicidal these last couple of days. It's amazing how perception and hope can change your outlook. I'm still better than I was before the surgery, but the backsliding can completely change your perspective, cause you to abandon hope etc. Luckily my family is really supportive and so is my girlfriend. I told my sister and my girlfriend about my mental state and they are being incredibly supportive. I am going to start going to a counselor again. I don't mean to bring anybody down but I wanted to post the latest update.
Re: Progress with Dorsal Nerve Decompression
I'm really sorry to hear about your pain levels increasing, George. I think you are smart to go back on the medication for a bit and hopefully things will calm down again soon. Having a supportive family can make a huge difference in giving you the courage to keep fighting. I'm so glad you have that support.
Take care,
Violet
Take care,
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.
- helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Progress with Dorsal Nerve Decompression
Think the cymbalta + is a good idea. I can understand the predicament; even tho' you are slightly better than before surgery, the hope you had for your recovery was boundless and any set backs must be soul destroying.
I suppose the phrase 'early days', will be used time and time again but then from all accounts, it's true!
So glad you have good people around you BG
Also hope things calm soon,
take care,
Helen
I suppose the phrase 'early days', will be used time and time again but then from all accounts, it's true!
So glad you have good people around you BG
Also hope things calm soon,
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.
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- Joined: Wed Sep 29, 2010 10:35 pm
Re: Progress with Dorsal Nerve Decompression
Thanks, Helen. I appreciate it very very much. BG.