no end to vicious cycle?

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no end to vicious cycle?

Postby Redevil » Tue May 10, 2016 6:30 am

I'm into 6th month of post-surgery rehabilitation cycle which is supposed to time frame for nerves to start healing.
Somethings have improved others not so much. For instance tight pelvic floor has improved and elastic feeling around hip has gone.
But some other symptoms have erupted over last two months or so.For example every time during sexual arousal and ejaculation , there is stabbing pain in left part of lower back (multifidus muscles area) and in back of left rib. To make matters worse my erection issues haven't improved, the tingling sensation is still there in scrotal area.
Someone please shed some light on my potential options.
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Re: no end to vicious cycle?

Postby janetm2 » Tue May 10, 2016 2:49 pm

Are you seeing a PT? I got exercises from them to strengthen the multifidus muscles and general core strengthening that helps my low back.
Janet
2007-08 pelvic muscles spasms (per colon-rectal dr.) treated by ElectroGalvanicStimulis(EGS). 6/27/10 sat too long on a hard chair- spasms, EGS not work Botox help, spine pain dr 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 started/surgery at age 21. TG gave me back enough sitting to keep my job and join in some social activities. I wish the best to everyone!
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Re: no end to vicious cycle?

Postby Redevil » Wed May 11, 2016 5:53 am

I'm working with my osteopath regarding mucoskeletal issues and they were getting resolved as well. It's just that latest relapse has broke my spirit.
Does anyone think Botox can help??
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Re: no end to vicious cycle?

Postby Violet M » Mon May 16, 2016 4:05 am

If your tight pelvic floor has improved I'm not sure what further benefit Botox would have. It might relieve some symptoms temporarily but if there are some musculoskeletal issues that need to be dealt with Botox would not be a permanent solution. Some people have had bad reactions to Botox and gotten worse so I'm not sure it's worth the risk. Has your osteopath checked your SI joint and checked for any pelvic instability or ligament strain?

Six months is still pretty early to draw any conclusions after PNE surgery so it's possible you will continue to see some improvements. I went through stages of healing where some things got worse but then those symptoms faded away. I continued to see improvements for several years after surgery -- nothing sudden and immediate but just slow improvements. I did some PT, used a TENS unit, and had prolotherapy injections to strengthen the ligaments and all of those things helped.

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: no end to vicious cycle?

Postby RJR » Wed May 18, 2016 2:15 am

I had a similar journey as Violet. Dr. Hibner's former PT, Loretta Robertson, told me that most everyone has some level of flares at the 4-8 month.

Bob
Cyclist till perineal pain onset R side (Apr'08). Dx with PN (Aug'09). Lyrica gave 30% pain reduction. Potter MRI (Oct'10) validated at surgery with Dr Hibner (Nov'10) - found nerve attached to scarred STL. Now sitting 10 hrs/day vs 1 hr/day pre-op. Occasional MRI-guided steroid injections by Dr. Jan Fritz at Johns Hopkins. Surgery video = http://www.youtube.com/watch?v=6FDwana6SQU

Deep neuropathic burning pain flares have been gone since surgery...Grateful to Dr Hibner.
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Re: no end to vicious cycle?

Postby Redevil » Sat Sep 17, 2016 5:24 am

Hi all,
It's been 10 months since I had nerve(pudendal) decompression surgery on left side. Things have improved over the time like tingling and numbness has improved and so has the sexual dysfunction. But lower back pain is getting worse. Sijd specialist sent me to get Spec-CT and results showed multiple tendon enthesopathies and hip impingement leading to Sacroilliac joint incompetence on left side.
He is telling to me to continue with PT for now.
What are my options and does Prolotherapy makes a diiference??
Thanks
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Re: no end to vicious cycle?

Postby Violet M » Sun Sep 18, 2016 3:47 am

I had several prolotherapy injections and I felt like they did make a difference. Slowly over time as my pain decreased I was also able to start exercising and strengthening back, buttock, and leg muscles to help compensate for the ligament/SI joint issues but I don't do anything extreme -- just light weights and nothing real bouncy like jogging.

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: no end to vicious cycle?

Postby Redevil » Mon Nov 28, 2016 12:51 pm

Update on my condition:
It's been a year since my surgery, nerve is healing though slower than the rate I'd anticipated. Nerve related issues like tingling sensation,numbness in groin area
and weak erections are getting better as time passes by.
Only hiccup has been Sacro-illiac joint pain worsened as time has passed. It exacerbates when in I do some physically strenuous activity like bending repetitively or lifting something heavy from floor or sexual intercourse(this i can't correlate). I've been on sacro-illiac rehabilitation exercise regime for last three months now, it has made some impact but not that would be daylight before and after i started.
Anyone who is or has suffered from SIJD can please tell how long does it take for physiotherapy to work. I'm hoping Doctor would put me on prolotherapy next time I see him.
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Re: no end to vicious cycle?

Postby jaxi123 » Tue Nov 29, 2016 2:41 am

I have SIJD as well. Nothing has helped it
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Re: no end to vicious cycle?

Postby Violet M » Wed Nov 30, 2016 6:10 am

I would say it took a couple of years of slowly building up my strength and figuring out what exercises I could tolerate to notice a significant difference in SIJD problems but I am still not cured and never will be because I have bad ligaments. You can strengthen the muscles to compensate for bad ligaments to some extent but ligaments don't heal easily and if you have any genetic components contributing toward weak ligaments you may have to be careful the rest of your life. At least that has been my experience.

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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