That’s great there is some communication.Thats huge. Hope they can sort it out for him.
No use in reinventing is right. Just trying to help.
Let us know how it goes.
That’s great there is some communication.Thats huge. Hope they can sort it out for him.
@Rmd123 Patient. I’m a dentist in the Denver area. 33, vasectomy last year, chronic issues ever since. More importantly, I’m a father of 4 and would give my life for my kids. I know you feel the same way because you’ve landed on this site. This site is a blessing. No one wants to be on here but, without the support of these random people whom I’ve never met, I’d never make it.
I think i sent to many emails. The site said I had to wait three hours. I’m back. Choohooo your awsome thanks for getting us together on this complicated subject and finding the mom in the same situation.
Choohoo thank you! Rss thank you! Three different blockers not working. Many different drugs not working. Nero comming in today. Spedred… As we both pray. I hope that these great docs can fix this for the both of our sons
When he’s lying on his back with weight on his butt does the pain level change at all if he lifts butt up taking weight off butt cheeks, hips and tail bone.? I’m talking just get him to go from full weight on butt lying on back normally to lifting it a half inch upwards. If pain level changes that tells you quite a bit. (If it doesn’t disregard rest of message.
You have Doctors there so I won’t get carried away with suggestions. Nut cracker syndrome (lol it’s real), piriformiis syndrome, L4-L5 or L5-S1 nerve impingement, varicocele. All cause more pain if pressure is increased with pressure on nerves or veins (Blood pressure in veins increase) across the butt and lower back. Nut cracker syndrome is a very real and painfull condition,please google. Easily missed.Varicocele are under rated for cause of Nastey cord pain also, worse when sitting or pressure on veins in buttocks. Other than that they damaged a nerve but that’s a long time for it to sit without issues. Hope it goes well. Thoughts are with Ya.
Rmd123 . . . thinking of you and your son today. We meet with a new pain management doctor tomorrow in our town, which has a university teaching hospital and a major medical center (but we still had to go out of state to see Dr. P at the PUR clinic). Two medical schools very close by. The only medication that has helped my son is oxycodone and gabapentin. The options that we are considering are: more nerve blocks to see if they work; neurectomy (removal of the nerve) or orchiectomy (removal of the testicle). We have already been through: robotic neurolysis of the right spermatic cord, cryoablation, and botox ablation. Please let us know how things are going.
Ok here is where we’re at today. Three blocks done yesterday. None long lasting, but did redo the block near the top of the scrotum and seems to be working. Doc states that since this works, he is thinking that he would like to try the denervation surgery. Don’t know when but will let you know. Again you have been mentioned many times and my doc is reading the blog. Thank gosh I haven’t had anything bad to say.
I am here with my son waiting at our appointment with his new pain management Doctor. Generally, we were told that denervation has a high success rate (like 85%). My son did the surgery last June when school was out, and he did rest at home for a few weeks. I guess that everyone recovers on their own time, but the recovery seemed long to me. I am so glad to hear that the block is working. Sounds like your son has a good team assembled.
Please know that your in our prayers too. Block brought him down to seven and slept a couple of hours. Pain back up. I hope your visit goes well. I will let you know if and when on the surgery. Also would like your number again. I know I saw it but can’t find it. Don’t know if they took it down or what.
Thank you. We both need prayers and miracles. The most difficult aspect for my son is not sleeping well. The next treatment the doctors are going to try is pulsed radio frequency ablation. A nerve block is scheduled for Monday. I sent you my number is a personal message. It may be difficult to find your messages on the forum? I do not want to post it publicly. I hope that you can find it.
@Rmd123 How are things going? We had to cancel a procedure today for my son due to icy roads. It was disappointing not to be able to get it done today. Your son is in my thoughts and prayers.
@Rmd123 Any updates on your son? I hope and pray that he is doing better this week. My son is having a diagnostic nerve block on Tuesday.
I haven’t been in the site for a while due to the guilt I felt. I will explain, Ryan had the denervation surgery on Feb 13. We were released that night with no pain. It was awsome!! The guilt came in know your son was out there and has not had the same result. As you may or may not know I have tried contacting you via phone and start to get on this blog and can’t seem to put in words how I felt. Well here is the kicker…we are back in the hospital after 8 days of being pain free. Last night he turned to get off floor and fell to knees crying. So here we are same pain. 1 to 10 it’s an 8 on heavy meds. Pain starts at right hip and down to testicale. 8 days pain free and this again!!! Why?
That’s horrible!! Not sure how denervation worked so well then … Not going to blow smoke but maybe a SI joint nerve compression. You mentioned hip pain. They can do a guided block to SI joint. Relief is almost instant if that’s what is going on. Seems unlikely if denervation worked.But worth having a thought about. One of the guys on here… Choo or Aschiro talked about nerve back talk before but that doesn’t help you much standing with your kid in agony.Did his maneuver rub or compress nerve end that was operated on? Read my previous post about if the pain changes at all if he takes weight of his hips(butt) when he raises it a bit.
Not good. That Doc there you would hope he would like to do an ultrasound of surgery area(can detect inflammation) or X-ray of hip or lower back .Pelvic MRI.The fact he was pain free till maneuver says to me surgery location related. 8 out of 10 while on meds is pretty bad.Cant handle that forever. Hopefully Doctor has an idea of what to do. Thoughts are with you and son. Wish I could help more. Aschiro or Choo might have some ideas. It’s nerve problem but what to do is the issue.
Oh my goodness. I am so sorry to hear that your son is back in pain again. The denervation surgery is supposed to have an 85% success rate (I was told), so I was hoping that you were going that route. You did not need to feel guilty at all. All of here are cheering each other on and hoping that the guys in pain will get well. I don’t have any answers for you, and I am hoping that the doctors will. Could it have anything to do with the formation of scar tissue? Maybe it is too soon for scar tissue to form? Today my son had an outpatient nerve block of the genito-femoral and the iliohypgrastic nerves and one other nerve. It seemed to bring down the pain level a bit in the abdomen, but not in the testicle. He said that the procedure was pretty uncomfortable and he is feeling the pain of the injections. I’m feeling pretty down tonight - was hoping that maybe we’d have a silver bullet today. Next up is trying another spermatic cord block at the PUR Clinic at the end of March. Dr. P said that so much is not known about these complex nerve situations. We are nervous to move forward with anything too invasive right now. Sending more prayers your way and hoping that the pain will back off for your son.
Here is the question? Do I pack up my son take him to Dr. P and find same result? Form everything I am reading about SPEDRED is in same boat and has seen Dr. P. Working on a Skype conference between my sons Doc and Dr P. Will let you know how that goes. Do have appointment with Dr. P but would hate to fly down to find same result. I can truley tell you my sons Dr is on top of everything and have great confide in him. We did do a different nerve block yesterday, some relief at hip area down but never to the testicale area. Trying a couple of nerve block pills today. Tried some sports stretching but no relief. Did Spedred ever have any relief? As you know after denervation surgery we had 8 days pain free. What triggered it again? So many questions and not enough answers. Forgive me I’m talking out loud! Here is the relation with what seems to be everyone’s pain problem… Testicale torsion and vasectomy surgery basically ant my surgery on the testicale. So now we need to know about every nerve that goes down there. There has to be some one out there that has that answer. So next step is to isolate the nerve and systematicly go after each one. This I know sounds much easier than what I just said but am I wrong. So is there a DR that specializes in these nerves. Again a rambling dad, a wife who is sick to her stomach on a daily basis and a so. Who sits in a hospital bed telling me to make the pain go away…use every cuss word you can think of after this statement and you get the idea.
Yes, the situation for our sons is the worst. I have also been in contact with Dr. Dellon via email. You can go to Dellon.com to
see his book PAIN SOLUTIONS, click on it and download the Groin Pain chapter free to learn his technique, which is surgery to remove the nerve (assuming you can identify the nerve). Dr. Dellon is out of Baltimore but is in Vegas for the winter. The only time my son got any pain relief so far was after Dr. P’s mapped nerve block of the spermatic cord. We are going to Florida in March to try that again. We are nervous about surgery to remove a nerve because of the risk that the pain could get worse. In the meantime he tries to keep up with his school work and live in constant pain. Would you like to talk on the phone? My stomach is queasy a lot due to concern for my son (and thinking of the many pain sufferers on this forum) so I understand how your wife feels.
Interesting. My son’s nerve blocks on Monday also did not give any pain relief to the testicle, only minor relief in the abdominal area. Only gabapentin and oxycodone provide some pain relief. I agree with your theory about isolating the nerve. My son HATED the nerve blocks that he had earlier this week - painful for him at the injection sites. For Dr. P’s spermatic cord block, he has to go under anesthesia. Last one in May provided 12 hours of relief.
Sorry to hear about both of your son’s situations. Pain in this area is bad enough at most of our ages. I can’t imagine it at their age. Best of luck for answers and solutions for you all.
Frustration is at a high! We’re still here sitting in a hospital figuring out meds to get my son to Florida on Wednesday. You name it he’s either on it or tried it for pain control. Let’s look at all who have visited this room in the last week. Nerologist, pediatric, pain docs, MRI on the back CT and of course a urologist that has been going out of his way to make sure we’re not missing something. Now through all of this the rumor of the pain being in his head makes me crazy. My only saving grace has been all of you and a nice chat with DrP. All who are on this site need to go to his website and find the radio interview and listen with an open mind. PUR clinic. I leave you with this How many people are out there in this pain and all think it’s i Their head. I’m lucky to have found this site and and hopes that Wednesday is the answer with Dr P.
So much good luck to your son and your family. Thoughts are with you. I go for a procedure in 6 days. Praying it helps even a little bit.
As for the “it’s in your head” comment. Don’t believe it for a second. This type of pain is telling a person that something is wrong. Good for you doing your best to get it sorted. I’d like to trade places with the Doctors who say that for an 1 hour. They wouldn’t be saying that ever again.
Good luck and please let us know how it goes. I’ll do the same.