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It's been a while.Any progress?


#1

Hey guys. I dropped off the map for a bit. Still fighting this horrible condition. My denervation failed completely. Didn’t make it worse but no better. The swollen vas/epy still there and throbbing bilaterally. Cyst in right comes and goes… ridiculous. My pain was mostly just left scrotum but went bilateral then cyst/sperm granuloma in right. Scrotal rsd.
As I mentioned in previous posts that I was having arthritic ms like nerve pain etc that continued to get worse. Just to let you know it’s gotten so bad I go for nerve conduction study tomorrow. I’ve had nerve ablation done in back trying to kill nerves to groin/nuts. That didn’t work either. Got really pissed with my Doc (he doesn’t deserve it.Hes trying) and asked for semen cultures (2). Both came back with nothing .Urinalaysis with minor growth. Reasons I asked for this? The pain was so bad I could not believe that this wasn’t an infection . I knew it wasn’t but the pain was and is that bad.
I had a vas in 1997 and have had severe nut pain for 19 years . The constant pain has ruined who was a strong hard working guy and now my nervous system is over stimulated, causing anxiety/depression, loss of weight due to inactivity etc. Arthritis appeared almost over night after vas and really is getting bad now.(SI joints/l5/s1 facets). I know 85 year old men that have less pain than I do. I’m 50 now. Vas cut out the best 19 years of my life.
I really hope they stop doing this procedure completely. Even with new methods they should not be doing anything thing in the scrotum unless its life threatening.
Hope some of you old timers have finally gotten some relief and any new timers get things reversed before the cycle begins lol. Don’t mean to freak newcomers out but once this shit starts it doesn’t take a break.


#2

Man. I’m sorry to hear you’ve been at it this long. My urologist mentioned the possibility of crps as well. I hope he’s wrong. It’s a hellish condition.

Have you considered an orchidectomy? I know it’s extreme, but it might help.

Just throwing out ideas.


#3

Sorry to hear your battle has been going on for so long.
I second vasregret, have you reached out to DrP in Florida or Dr Jarvi In Ontario Canada ?


#4

DON’T DO IT! I had that done 2 years after my Vasectomy pain would not subside and totally regret it now but THEN I was willing to do anything to stop hurting 10 years ago. I asked the doctor I was seeing at that time if this would solve my pain and he assured me “more that likely pain will stop”. I also inquired about testosterone levels, would removing the aching testicle change my levels, he also said that wouldn’t change significantly. He lied there also. My levels drop all the time, some weeks seems worse than others. I did shots while back but I really didn’t see the benefits of giving myself shots every two weeks. So I just experience “hot flashes”,tired spells and foggy feelings all the time. Last time I had my levels checked and they stay on very bottom end of norm. Just my 2 cents from personal experience


#5

That’s rough dude. Did you have an inguinal or scrotal removal?

Does the other one still hurt or do you have phantom pain?

Perhaps it’s nerve pain, have you tried any other procedures?


#6

The removal was inguinal and I get really odd throbbing “attacks” from time to time in the scar. As if someone stabbing me in my scar site. As for procedures I think I’ve had everything under the moon done to me. Few had a brief glimpses of being pain free but then just to “reconnect/regrow” nerves and hurt much more intense. Oh it’s definitely nerve pain, because when Dr.P did targeted chord blocks and I had moments of being with out pain. But then later it seemed to return and with a vengeance too. 90% of neurological medications give me awful jitters like I drank a full pot of coffee by myself. Also I would break out in hives really bad like as if I had a Poison Ivy/Oak reaction and itch all over. So hit and miss tries on different medications over the years.


#7

Same diagnosis here RSD testicles but has spread whole body. I go next week to have my SI joints fused, had no problems with them before vas immediately began after vas along with pudendal symptoms and pelvic floor spasms. Now the lower abdominal muscles and pelvic floor muscles are weak and I can feel pubic bone and both si joints pop and move with every step. The pelvis is so unstable I feel like with one step my left leg is an inch short then the next my right is short. Have you looked into dorsal root ganglion stimulation or ketamine treatments for RSD they are the only things that show some chance of helping RSD. Ketamine didn’t work on me but I met al lot of patients it did work on for legs knees ankles foot etc. I’m still debating on drg stimulator or have Dellon remove nerves higher up he thinks I have neuromas in scar tissue from the cryoablation. He absolutely hates cryoablation on any peripheral nerve says it does too much damage to the tissue around the nerve up to a 1 cm which causes bad scarring and tissue death. Pm me if you have any questions about the RSD I saw Dr Hanna in Clearwater Florida who runs a ketamine clinic for RSD patients


#8

Hello,
Can pls recommend Doc for dorsal root and ketamine procedures? What is latter one. Thanks very much.


#9

I did my ketamine treatments with dr Hanna in Clearwater Florida unfortunately they didn’t help me but I met quite a few other RSD patients that they were working on. I chose him because he does 4 hour daily for 2 weeks. Same protocol used by the dr Fitzpatrick in Tampa. I chose Hanna because he billed my insurance and it was covered 100% since I met my max. I believe Fitzpatrick is about 5-10k. Each treatment at Hanna is $500 a day . Just to let you know it is a really taxing treatment you are basically a walking zombie for 2 weeks. He recommended DRG stimulator to be put in by dr. Nagy Mikael at Cleveland clinic pain center. I saw him and was scheduled then insurance denied it. They finally approved it but at that point I had decided on one last ditch effort with dr Dellon on nerve removal and will try stimulator if that doesn’t work. dellon diagnosed me with neuromas bilateral gf right II right IH left pudendal and left lfcn. What are your symptoms and what procedures have you tried

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#10

Thanks for help. Hope you feel better soon. Pelvic neuralgias left side (GF, II, IIH) and left pudendal. Difficult to sit. Some relief when standing. Like night and day differences. Painful to sit in car bucket seats and most soft seats. Starts with pulling pain left pelvic. Turns into intense pressure and pulling travels inside upper left leg. Dealing with this physical pain almost 4 years. Need a professional to assist. Thank you.


#11

You sound like your in the same boat as me not a good boat to be in. Have you noticed any of your muscles just shutting off. Basically my entire core muscles and pelvic floor just shut off due to the pain and my entire body feels like I’m being pulled straight down into the ground. I go sit for 5 minutes and everything reboots. I couldn’t sit more than 5 minutes for a year now I can sit an hour or 2. What nerve started first on you or was it all of them and was it caused by vasectomy or something else.


#12

Yes, noticed muscles below my core goes weaker, sooner. Seems combination
of constant pelvic pain and neuralgia, difficult to “get up and go” w
neuralgia, and maybe condition causes some involuntarily system issues
(muscle atrophy, fluids flow, vascular, etc.). Not sure. Feels that way.
Used to be faster. Had surgeries that triggered. Exercise does help. The
difference in pain between sitting and standing is stark contrasts. It is
nerve compression. Very similar to lower back nerve pain, but in the front
of pelvis. How do we resolve? Doctors can help?


#13

@CarolinaEdgar hello…i hope things are going better for you. I have had PVPS for somewhere around 20 years now just to let you know that you are not alone. I am writing specifically about what you said about nerve pain meds…was it Gabapentin? I have tried to introduce neuro pain meds several times to my pain treatment regimen because of all the guilt and the downright paranoia and fear of opiates in the USA. (I could take 3 to 5 times as much as i do with no negative reaction …i could say mire but i always go too far…anyways) I have been getting these dry scaly itchy blotchy spots on my skin since about the time i started 100 to 200 mg of Gabapentin to sleep at night. I’m also getting age spots and dark patches that i have never had before. I cant take Gabapentin or Lyrica during the day because Gabapentin makes me dizzy and i fall a lot and Lyrica makes me nervous like you said in your post. I was just considering quitting it when i saw your post on “It’s been awhile any progress”…Does this sound similar to your skin and nerve reaction to these meds? Thanks


#14

Hello @Eng13 …you can learn more about ketamine info at painpathways.com or .org i can’t remember and buy one of their back issues on CRPS and the useage of ketamine. I can’t remember the issue number but i could dig it up if you cant find the issue on their site.


#15

Wow, yeah it sounds exactly what was happening to me with the fogginess and “zombie” like days. And always gave me jitters and shakes like I’ve drank too much coffee from almost every Neuro medication I tried. Even the dry scaly patches you speak of, I never made the connection. So I just thought it was from daily sun/air exposure and never told my doctor about them and just put Intensive care lotion on the spots. So I avoid any and most Neurological medications as a regimen because of the side effects. Few actually made me very short tempered (easily agitated) like Amitriptyline, I began taking it to see it it would resolve the throbbing. My wife called my doctor 2-3 days after and asked him to take me off of it ASAP because I was unbearable from pain already and now medicine made me like an “agitated BEAR”. So I stopped taking it too. I need to pull out the list of medications I have been on over the last 13 years because it is pretty extensive.


#16

Thanks fof your input @CarolinaEdgar…i am going to cut out my Gabapentin and see if it helps my skin…i’m not sure it’s doing me much good exct if everything elese hasen’t done thw job. …i’m also going to talk to my doctor and see what he thinks is causing the skin issues. Its good to have data that someone else is experiencing it.