Considering triple neroectomy or inguinal orchietomy

Hernia Discussion Forums Hernia Discussion Considering triple neroectomy or inguinal orchietomy

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    • #11378
      Pwuenstel
      Member

      looks like I ended up being the unlucky 1% that had a hernia repair that went wrong.

      Brief medical history… had an open inguinal hernia mesh repair in 2016. Had immediate pain in my left testicle as well as pain at the surgical site. I was teated for reoccurrence of the hernia, came up negative. In 2017 I had a hydrocele performed, as well as a second hernia repair, this one laproscopic, to remove a portion of the mesh that had migrated on to the spermatic cord. This did relieved some of the pain in my testicle, but I still suffer daily with testicle pain, as well as pain at the hernia site

      I believe I have a good team of neurologist, and general surgeon. They both agree that the pain is nerve damage. The neurologist has hesitated, but finally agreed that he would perform an inguinal orchiectomy, although he is not certain that will cure my pain. Option 2….I have a general surgeon who believes a triple neurectomy may offer a cure, but it comes with risks as well. At this point, I am ready to roll the dice

      has anyone on here had either of these two surgeries to relieve testicular pain? Any advice would be really appreciated

    • #16461
      Good intentions
      Participant

      The actual measured number is 10 – 16%. Here is a recent review of how to deal with chronic pain, linked below. But, since your pain is so specific you might want to choose more carefully. Has all of the mesh been removed? I mention this often in my posts but the training and the mantra today for the mainstream surgeons is that mesh is inert and any problems must be caused by something else. Even though it is known that the mesh fairly rapidly stiffens in to a boardy less flexible structure. It sounds like your surgeons are trying to “salvage” the mesh. That is a word that they actually use – salvage. The mesh is meant to be a permanent part of the body, so removing it is one of the last resorts, when maybe it should be the first.

      Regardless of the reasons for the thought processes, I would at least get more opinions. Try to find a surgeon who has actually worked on a case like yours. It sounds like your two surgeons have just gone to the books and are telling you what they read there.

      Here is some reasoning, in question form, for having all of the mesh removed – are there cases of injury where scar tissue alone was enough to justify either of the two options you described? Auto accidents, stab wounds,other types of surgery, etc. Because if you have all of the mesh removed that is what you will end up with. Scar tissue that will restructure and adjust to get back to its original form. That, to me, seems like the logical approach. Remove all of the foreign body that started the problem. Then consider drastic measures. The surgeons will want to try to solve all of the problem in one shot. It’s up to you to slow them down, to try to save your parts. Having an orchiectomy will probably affect you psychologically also. Complete mesh removal before an orchiectomy seems logical. It’s surprising that any surgeon would consider the orchiectomy alone, first.

      Get more opinions. Send a message to Dr. William Brown at his practice. He will probably respond. Include your phone number. Don’t try to stay inside your insurance plan, be willing to travel. It’s the rest of your life.

      I had two very large pieces of mesh removed and the only area that still gets sore is where a mesh fragment is. It’s been seven months and it’s stayed in the back of my mind that I will eventually have to get the last small piece removed. I can still feel it at times and don’t know if my body is going to adapt to it or not.

      Good luck. Do more research. Your problem is not a “by the book” problem.

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5896652/

      https://www.sportshernia.com/sports-hernia-specialist/

    • #16462
      Good intentions
      Participant

      Dr. Peter Billing of Eviva is also a good resource. He will respond to a well written description also and will remove mesh. He is the one that removed my mesh, he is in Shoreline WA.

      https://www.evivamd.com/about-eviva/meet-our-physicians-providers/peter-s-billing

    • #16472
      SavingBob
      Member

      Hi! I had a left inguinal hernia repaired in May 2013. I’ve had continuous radiating from the tacks! At least five debilitating month long episodes of severe pain. First one was in Oct 2013; shortly after feeling like I’d maybe recovered. This time around my hopes of recovery seem unlikely. I’ve been in level 8-10 stabbing pain 1/2 of the past 2-1/2 months. 50% of the time I feel edges of the entire mash; like steel wool is scrubbing my internally. with occupational throbbing pain lower near of in left testicle, and higher up mid way to near my belly button. Always unable to walk at normal speed.

      I’m scheduled for surgery with Dr. Brown, first week August 2018. https://www.sportshernia.com/

      Secondly, Just is case, I’ve scheduled an alternative surgery with Dr David Chen, UCLA, for the last week of August.

      Thirdly, due to long travel time required (flying or driving!) I’ve been still looking for a closer alternative; preferably within the state of WI. So, yesterday, I scheduled a evaluation with Dr Matthew Goldblatt, at Froedtert Hospital Acute Care. https://www.sages.org/sagespages/members/matthew-goldblatt/ Has anyone heard of his work?
      This would require postponing the surgery with Dr Brown until the end of August; if the Milw visit don’t work out (plus the surgery is not set for Froedtert yet either)

      I feel confident with either Dr Brown or Dr Chen. I actually, feel better about the open surgery approach Dr Brown is suggesting than laparoscopic (maybe with aid of a robot, I’d feel differently); since it took two months for the stomach swelling to go down after the original surgery (now I’m feeling the scar tissue under the left side of my belly button -where the video scope went in).

      Does anyone have any thoughts on what I should do?
      Thx

    • #16473
      Momof4
      Participant

      Pwuenstel,
      I had a laparoscopic triple neurectomy by a hernia expert and it did not resolve my pain. However, it did result in muscle atrophy, which I was not warned of the risk of this happening. When I asked an expert after the fact, I was told that atrophy can be due to triple neurectomy. I believe that this contributed to recurrent hernias I have had to deal with. Would yourntriple neurectomy be lapnor open? I would make sure to ask lots of questions regarding either procedure, the possible risks of the surgery and their outcomes from each procedure. I understand that you are ready for this to be over. This pain is very hard to deal with, both mentally and physically, but you need to make the most informed decision possible. Good Intentions has made some excellent points and suggestions. You can’t just roll the the dice, your future depends on resolution of your problem. Best wishes!

      SavingBob,
      I can relate to months, well years, of debilitating pain. Also, I have traveled across the country for hernia surgery and mesh removal. It adds a whole new level of difficulty. For me, there always seems to be an unforeseen complication that results in me having to stay longer than planned, and also, the travel back after surgery has been difficult. It is also harder to deal with complications, that may arise some time after surgery, from so far away. It is certainly worth checking out the doctor closer to home if he sounds promising. It is much easier having surgery close to home! If you don’t feel confident after the consult, traveling for expert care is worth it, just a little more complicated. I have seen Dr. Goldblatt’s name on another forum but don’t know any specifics. Best wishes for resolution to your pain! I know how difficult this is and I am still working to get my life back! Keep looking for the answer, it will come.

    • #16477
      NFG12
      Member

      I would have the rest of the mesh removed first before an orchiectomy. You have already had open and laparoscopic procedures done so there is most likely a lot of scar tissue built up. A lot of surgeons perform triple neurectomy or even selective neurectomys. Once mesh is put in it alters the anatomy and each surgery in the same spot will cause more and more scar tissue each time and therefore more pain. Surgeons tell people that with a neurectomy you pretty much trade pain for numbness and most people are ok with that. Like they above posts they don’t say other things that can go along with a neurectomy like burning or muscle atrophy. Another thing patients don’t realize is say if you get mesh removal alone that when the scar tissue grows back in it can entrap your nerves and cause pain/problems. If a nerve is damaged by mesh you will most likely not miss it. If a nerve or nerves are encased in mesh when a surgeon is removing the mesh sometimes they will just carefully release the nerve but most don’t not take that chance so they will cut it because you cannot see the microscopic damage done to it even if it looks ok. I would consult about getting the rest of the mesh removed or look into a selective neurectomy of just the genital branch nerve if testicle pain is the issue but I would not go for the triple neurectomy. I wish you the best!

    • #16496
      Chaunce1234
      Member

      I am sorry you are going through this.

      Where are you located? Perhaps someone can recommend a doctor located near you that can help your case. You will want to seek out an expert with specific experience managing pain related complications of hernia surgery, as it is really its own sub-specialty of medicine.

      Do you know the type of mesh used in the first surgery? Did the second laparoscopic surgery also use a mesh?

      Out of curiosity, have you tried any pain management treatments? Nerve block injections? Physical therapy? Extended prescription strength anti-inflammatory course? Other medications? Medical marijuana? Alpha lipoic acid? You’d of course want to talk with a doctor before going any of these routes. Speaking with a well-regarded pain clinic can be very helpful as well.

      If you’ve had some success with nerve block injections before, cryoablation of the nerves may be something worth looking into as well. They basically freeze the nerve to try and interrupt the pain signal, but the nerve itself is not cut.

      I’m not a doctor but as a fellow patient I would recommend caution before any extreme surgeries like orchiectomy, or even before a nerve removal procedure. Severing of a nerve, a testicle, or even a limb or appendage is not guaranteed to stop pain – phantom limb pain is an obvious example of this where people who lose a limb often report feeling pain in the limb that no longer exists.

      Also, keep in mind that pain can radiate, so you may be feeling it in the testicle but the “problem” may be higher up somewhere along the nerve, or along the spermatic cord, even in your abdomen. Perhaps a better approach is to first try and figure out if something else is causing that pain – a bad hernia repair, a new hernia recurrence, a failed mesh, an incompatible mesh, excess scar tissue, entrapped nerve, etc – and try to deal with that and see if it helps.

      Good luck and keep us updated on your case and decision making.

    • #16498
      Chaunce1234
      Member
      quote Good intentions:

      Dr. Peter Billing of Eviva is also a good resource. He will respond to a well written description also and will remove mesh. He is the one that removed my mesh, he is in Shoreline WA.

      https://www.evivamd.com/about-eviva/…eter-s-billing

      Interesting, this is great feedback and good data to have about another doctor. Thank you.

      Do you happen to know if Dr Peter Billing performs inguinal hernia repair without mesh as well? If so I will add him to a list of surgeons able to do no-mesh repairs.

    • #16499
      Chaunce1234
      Member

      I had a more detailed reply but it was flagged for some reason.

      Anyway: I’m sorry you are dealing with this. I would strongly recommend seeing an expert hernia surgeon who has experience managing complications of hernia repair. It is a sub-specialty of its own.

      Where are you located? Perhaps someone can offer a few options near to you. You may need to travel, however.

    • #16501
      Pwuenstel
      Member

      Thank you everyone for your insight and suggestions. Very glad I posted in this forum, was beginning to feel a little hopeless and ready to take extreme measures without trying less invasive procedures first. Not sure why, but my surgeon ruled out removing the mesh early on in this process. I have asked about it a second time during a consultation, and he shot it down again. I’m going to look into this procedure again though, with my surgeon, as well as with the doctors you have all suggested. I have always felt “tender” in the incision site, as well as pain. Also, even at times when pain is not present, it feels like there is a foreign object inside of me, that my body is rejecting. It does seem very logical that the mesh is some, if not all of the problem.

      [USER=”2029″]Good intentions[/USER], Cant thank you enough for all the info. You are correct, I need to get more opinions and not be trapped in my insurance plan. Questions about mesh removal. Why did they not remove all of the mesh during the first surgery? Secondly, once all mesh is removed, I assume the original hernia returns, what do you do to deal with that? a non-mesh approach? I read the link you sent of Dr. Brown, he mentioned injecting a steroid around the mesh. Have you, or anyone on here tried this? I am actually planning to have this done by my pain management doctor, but wasn’t giving it much hope.

      [USER=”1176″]Momof4[/USER] , very sorry for your results, I did hear that muscle function could be effected, as well as atrophy. It seemed like a better option then orchietomy, but I know that I might have to do both procedures eventually if nothing helped. The triple neroectomy was going to be open. I pretty much have ruled this out though, for now. perhaps as [USER=”1942″]NFG12[/USER] recommended, a selective neurectomy, after removal of the mesh. I really believe this could be the best option, as you all have stated.

      [USER=”2643″]SavingBob[/USER] , good luck with your surgeries! Please keep us all posted on your recovery. I too, am going to reach out to both Dr. Brown and Chen.

      Calling my pain management doctor tomorrow to schedule steroid injection around the mesh, he did say that this helped a number of his clients. Not sure if this will help with my testicle pain or not, but worth a try.

      This could be unrealted, but has anyone had foot numbness on the side where the hernia has been repaired?

      Thanks again to all of you for taking the time to reply with much appreciated points and suggestions!

    • #16503
      Pwuenstel
      Member

      [USER=”1916″]Chaunce1234[/USER] yes, I need to find someone who specializes… no doubt.

    • #16508
      Chaunce1234
      Member
      quote Pwuenstel:

      [USER=”1916″]Chaunce1234[/USER] yes, I need to find someone who specializes… no doubt. i am located in Pittsburgh PA.

      I responded with a large response to everyone, and it was flagged as well. Was wondering if anyone had a steroid injection around the mesh, and if it relieved any discomfort?

      There are certainly people that have had positive experiences with nerve blocks / steroid injections to target the area of pain, so that is absolutely something worth trying out.

      As for hernia experts with significant experience managing complications of hernia surgery, including chronic pain, mesh removal, etc, here are some starting points:

      – Dr Igor Belyansky in Annapolis Maryland

      – Dr Brian Jacobs in NYC, New York

      – Dr Shirin Towfigh in Los Angeles, California

      – Dr David Chen at UCLA California

      – Dr Bruce Ramshaw in Tennessee

      – Dr Jonathan Yunis in Sarasota Florida

      Dr Belyansky is very well regarded and several people on these forums have had good experiences with him managing complex situations, mesh removal, etc, he may be your closest best option, and at the very least would be a good resource to reach out to and start a dialog with.

      Another possibility is Dr William Meyers at Vincera Institute in Philadelphia PA, though I am not sure if they do mesh removal. Typically Vincera Institute focuses on athletes and related pain issues but it could be a worthwhile resource to contact as well.

      There are certainly other options available too, those are just a few off the top of my head. Hopefully some other forum users will chime in with some additional options near to you.

      Best of luck and keep us updated on your case and decision making.

    • #16511
      Pwuenstel
      Member

      [USER=”1916″]Chaunce1234[/USER] Thanks for the info. I wish there were more doctors out there who have experience with these complications. Seems like there are a million doctors who can install mesh, but only a handful that really specialize with the nerves involved. I’m going to start with reaching out to Dr. Belyansky, and Dr. Meyers as well.

      I called and left messages with a couple doctors here in the Pittsburgh area, that have experience with mesh removal, though I don’t think they have as significant experience handling hernia complications as the list you have provided. I need to travel, then travel it is.

      Waiting to hear back back from the pain clinic as well, to see if they will inject the mesh with a steroid, as we previously spoke about.

      Thanks again for all the help, very much appreciated. Will keep you posted.

    • #16646
      SavingBob
      Member

      Thanks to everyone that posted. I was watching for emails from HerniaTalk, but saw nothing; so I didn’t know there were any replies. Trying to use my phone is also clumsy at best! The text is to small in the reply window and is not constrained the the edge of the screen.

      Update: I desided to travel to Bay Area. The trip went way better than expected!
      I saw Dr Brown for surgery last Friday. I’m in recovery now! Dr Brown said the surgery went well but was lengthy. He removed the mesh which was had nerves intwined throughout, and did the triple neurectomy. Also my spermatic ord was stuck to the mesh too! Dr Brown said he managed to save it!
      I’m still in a great deal of discomfort. Today some increased burning pain around the incision is new symptom.
      Dr Brown is amazing! He has stayed in contact nearly every day to hear how I’m doing.

    • #16649
      Pwuenstel
      Member

      [USER=”2643″]SavingBob[/USER] Thanks for the update, glad to hear everything went well! That’s a big step you took, I’m looking to do the same. I contacted Dr. Ramshaw’s and got put on his waiting list. Hoping to see him in a few months to discuss mesh removal. I may also contact Dr. Belyansky as he is closer to me.

      Did you have any testicle pain as well, or just pain at hernia site? Did Dr. Brown give you an idea of how long your recovery would be? Please keep me posted on your recovery, really hope this brings you the relief you are searching for.

    • #16672
      Chaunce1234
      Member

      [USER=”2643″]SavingBob[/USER] Thanks for the update about your case. How are you doing now? Any difference in symptoms and pain level since before surgery? Did you have to have another hernia repair after the mesh removal? Was your original mesh put in laparoscopically or open? How did you like Dr Brown overall?

      You might want to consider starting a new forum thread to document your case and progress, I am sure it will interest many people who read this site. Thanks again for the update, heal up and be well!

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