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NH/MA in agonizing pain. Previous hernia mesh surgery done in 2009. Please help.

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  • NH/MA in agonizing pain. Previous hernia mesh surgery done in 2009. Please help.

    I had bilateral hernia repair in July of 2009 with Davol Bard 1 x 4 mesh. The mesh to the eye was always even and symmetrically balanced years after surgery. But now the left side has flattened and contracted. Several years after surgery, I noticed a tightening and intermittent shooting pains primarily on the left side of my abdomen, and rectal pain that slowly got worse.

    Last year in August of 2017, I suffered a groin injury invloving my scrotum and left mesh area very badly. I thought things would just heal on their own. It has been 8 months of solid 10/10 pain and agony to right now that has left me debilitated in agonizing pain that I can barely function.

    8 months of doctors, delays, misdiagnosis, numerous image studies including CT of the pelvis, MRI of the lumbar spine, left hip, and prostate, Scrotal Ultrasound. Numerous blood tests, urine, prostatic fluid, swabs all negative. Seen by numerous doctors including my PCP, urologist, neurogist, 2 surgeons, orthopedist.

    Put on numerous nerve drugs amytriptaline, gabepentin, lyrica with no relief but bad side effects. Same with muscle relaxants. Had nerve blocks done inaccurately under flouroscope that produced no relief or response. One which went terribly wrong, a pudendal block that had me leaping off the table in agony. The intern who performed the procedure hit bone hard and potentially other nerves making things worse, again attempting to diagnose and failing.

    My pain that originally was limited to the left inguinal area, scrotum, and left leg after the August 2017 injury, has now traveled to my legs, feet, back, and bowel. I fear I have developed central sensitization due to the length of time of 8 months in solid uncontrolled pain, and not pain managed.

    Doctors have tried to say it is not the mesh, yet I know my body, and in fact the left mesh has contracted, pulled up, and flattened. The injury could involve the mesh, cords traveling through the inguinal canal, and/or scar tissue, yet because nothing showed on image, doctors have done nothing for me, except nerve blocks that have failed to do anything even disgnostically, giving them the reason to brush me away.

    I am worried my body cannot withstand this pain level anymore, and the stress of the medical system not willing to look at the whole picture and help me. I am ready to have surgery to find out the cause of this, but no surgeon in my area is willing to acknowledge or do anything.

    I was given the name of Dr. Earle at Lowell General in Massachusetts 1 hour and 20 minutes from where I live in New Hampshire. I know he has posted to these forums before, I don't know if he might help me or not if he reads this.
    In the meantime is, there anyone experienced in mesh removal/revision in New Hampshire or New England.

    Please help I am in agonizing pain, and my life has been shattered by this since August 2017 and not so good care and I have run out of doctors willing to do anything more.

    Thank you and bless you for anyone that can help me.



  • #2
    I'm sorry you're going through this.

    Just out of curiosity, did the groin pain begin only after the later incident/injury? And what was the injury that occurred in 2017 that brought about the change?

    Have you been checked specifically for a hernia recurrence? They are sometimes overlooked on CT or MRI, particularly when the radiology is outsourced or not viewed directly. And what was your original surgery type, was it open or laparoscopic?

    The big thing you will want to do is find a surgeon who has a good amount of experience with groin and pelvic pain, re-do surgeries (including mesh removal), along with diagnosing other potential issues with the groin and pelvis. Unfortunately that may mean traveling to a different state. Here are a few specialist surgeons in your general region of the country whose names frequently come up on these forums and elsewhere that have been reported to be helpful, experienced, and knowledgable on complex hernia situations:

    - Dr Igor Belyansky, MD

    - Dr Brian Jacobs in NYC

    - Dr William Meyers in Philadelphia PA

    - Dr David Grischkan in Ohio

    - Dr Bruce Ramshaw in Tennessee

    - Dr Jonathan Yunis in Sarasota FL

    - Dr Shirin Towfigh in Los Angeles California

    Dr Earle is quite knowledgable and occasionally does correspond on these forums, he will be a good resource to reach out to. I am not sure if he performs mesh removal, you would need to ask he or his office directly. If he does not, perhaps he could offer a referral to someone who does that is near you.

    Another option is to gather your imaging discs (CT pelvis, MRI pelvis, etc) and communicate directly with someone like Dr Towfigh, Dr Jacobs, or Dr Belyansky to review the images for anything that may have been overlooked by a radiologist.

    In terms of pain management, you may want to consider some alternative options:

    - medical marijuana or marijuana derivatives, be sure to communicate with someone knowledgable about the topic specifically for pain management as there are different types

    - ketamine infusion therapy

    - work with a pain clinic, if possible


    Please keep us updated on your case and progress.

    Comment


    • #3
      The groin injury set this whole thing off, yet prior there had been shooting pains occasionally in the abdomen and tightness there and in the rectum. It could be that something was started involving the mesh or system, and the injury was the final straw pulling tissue near the left inguinal area. I had seen 2 local surgeons who dismissed the mesh or recurring hernia based on radiologist report. Yet I am aware that small hernias as well as mesh does not always show on image, and the symptoms I am having feel like the worst hernia times 100. One surgeon noticed the mesh may have contracted but attributed the pain to other pain drivers. The other symptoms that I originally described, whether caused by mesh rejection, chronic pain unmanaged, or sensitization at this point, I am unclear.

      As far as pain management, I have been tried on gabepentin, lyrica, amytriptaline muscle relaxants achieved no pain reduction and had to go off due to horrible side effects that affect me giving a hyperadrenaline response and other not so good things.

      I reached Dr. David Earle as I was referred to him by another good friend who is a doctor and recommended I speak with him. I have since sent radiology reports and mailed physical disks of all image studies to his office.

      I hope others can comment on my post as more information I hear, will help me through this painful medical crisis that has gone on too long.

      Comment


      • #4
        Pete,
        i always hate to hear of a situation like yours. If someone hasn’t experienced this type of pain, they have no idea how debilitating it can be. I had a large piece of polypropelene mesh that I had a reaction to. It was implanted for 2 years and was making me sick. I am thankful that I found the right surgeon to remove it. Unfortunately, now I have recurrent hernias. Maybe you can reach out to Dr. Earle through private message in this forum. Like Chaunce said, if he can’t help hopefully he can recommend someone that can, surgeon and pain management close to home. I tried several of the same medications that you mentioned and, like you, had unacceptable side effects. In my opinion, medication is not a solution to a mesh problem. The problem needs to be fixed. The hard part of that is finding someone who can make a correct diagnosis and is willing to admit that mesh can sometimes cause problems, even if they consider it “rare”! Dr. Towfigh has presented research that a CT scan is not good imaging for small hernias and even if it show up on imaging, the radiologist misses it and gives a false negative report. You need a hernia specialist that knows how to read the imaging and not rely on the report. It happened to me several times. I wish you the best on this journey. It is a difficult one but you need to persevere! It will pay off.

        Comment


        • #5
          I am faced with making a decision about mesh removal now and leaving me exposed to future hernias as only stitches would be used to sew me back up apparently. Much of my pain has been hard to figure out, as I have had other diagnosisis floated from prostatitis, pudendal neuralgia, CRPS yet not confirmed. I had a Pudendal nerve block that went bad where an intern left me screaming in agony on the table as she hit bone and other nerves I think damaging me further. My pain began after the groin injury last August 2017 I thought at 1st it just involved by left scrotum, left inguinal area and penis and rectum. Now it is in scrotum, penis, abdomen, legs, feet, back and ringing in my ears. My muscles spasm so bad and uncontrollable. I am getting burning skin feeling in arms now. I have not been able to tolerate the nerve drugs they tried me on, so no real pain management with this either. Just not sure how this has spiraled out of control. Could this have all started by involving the left hernia and mesh. Has anyone else had symptoms manifesting itself like this?
          Last edited by Pete; 05-09-2018, 03:37 AM.

          Comment


          • #6
            Originally posted by Pete View Post
            I am faced with making a decision about mesh removal now and leaving me exposed to future hernias as only stitches would be used to sew me back up apparently.
            After mesh removal you will be essentially starting over as far as hernia recurrence, as I understand things.

            And there is a wide range of mesh removal possibilities also, from open surgery, entering the abdomen from different points, to TAPP laparosocopy using robotics. The TAPP procedures enter from small incisions in areas that are not hernia prone, so the risk of hernia really only comes from the removal of the mesh reinforcement and the skill of the surgeon in leaving a smooth surface behind, with even stress distribution. That's my guess, from an engineering perspective.

            It's probably hard to recall the memory from back when you had the original hernia, but it might help your decision if you consider mesh removal as starting over, with hernias, as the worst case. Then you can have them fixed via different methods. It might be that the hernias don't recur and you'll settle at some new acceptable condition.

            Good luck. Talk to the surgeons that use TAPP and have experience in mesh removal and things will be clearer. Dr. Billing, Dr. Belyansky, and Dr. Towfigh, for example. You might be assuming that things will be worse than they need to be.


            As far as pain, my thought had been that the pain and other problems were coming from general tissue irritation and inflammation, from the mesh, as your body moves and causes it to bend and stretch. As Dr. Bendavid proposed in his paper about SIN. It isn't a few nerves that can be neutralized, everywhere that has mesh is affected, as the body tries to re-innervate the damaged tissue, growing new nerves in to the scar tissue around the mesh. Then the mesh redamages it as you try to live your life. It's a cycle of fix and destroy. That's one source of pain. The other is from the constant shrinkage around the mesh as body goes through it's normal healing process. My abdomen flattened out and stayed tight like there was a battle going on. Stretching it via exercise caused damage, which caused a healing response, which caused more shrinkage. At times it felt like I had a plastic picnic plate inside my lower abdomen.

            Here is a link to Dr. Bendavid's paper - http://file.scirp.org/pdf/IJCM_2014072117033945.pdf

            Comment


            • #7
              Good intention- Interesting explanation about the fix and destroy cycle. The tissue where I have mesh is hard. I have a midline scar from appendectomy years ago that has shifted 1/2" to the mesh side. The mesh is like a black hole sucking surrounding tissues towards it. Hard and swollen. Did you have your mesh removed?

              Comment


              • #8
                Good intentions - please re-read my initial post describing my symptoms, could all of my symptoms be related to the mesh and possible groin injury last August. Dr. Earle thought upon examination that I have several recurring hernias bilateral despite nothing showing on image. Does this in fact mean the mesh has failed also. I am in agony with pain in scrotum, penis, hips, abdomen, legs, feet, back, rectum. It seems everything has gotten worse and traveled over the last 9 months straight. Mostly pain is worse on left side, and when I squeeze my pelvic floor muscles it feels like something binding up on the left inguinal, left hip, left abdomen within the area of the mesh. I have had so many varying unconfirmed diagnosis, and I must make a decision on this surgery soon. All my muscles have spasms tight in response to this pain everywhere, and I fear I am becoming sensitized due to unmanaged pain also. Could mesh do all this in these other areas I have lost much feeling in my feet also, yet EMG test showed normal nerve function. How does all this relate. Pain is mainly in the groin, genitals, abdomen directly in mesh areas.

                Comment


                • #9
                  I can only give an opinion based on my experience of having a mesh implant. After tissue ingrowth the mesh gets stiff and inflexible. It pulls and pokes at the tissue at its perimeter. I think that when surgeons say that the mesh is not causing the pain, they are only thinking of it as a primary cause, not a secondary cause, meaning that the strained tissue at the edges is a secondary pain, caused by physical movement, not by the mesh itself. It's splitting hairs for sure, but that's how things are done. I suspect that Dr. Earle is also focused on the secondary tissue strains, as potential hernias, causing pain, but not yet palpable. One common method of fixing those mesh edge-induced hernias is to cover them with more mesh. Dr. Towfigh has said in previous posts that mesh-induced pain can be caused by pulling on nerves. It might be that your injury and rehealing has caused tightness that is pulling on nerves.

                  As far as mesh repairs "failing", it's really a matter of definition. If the original defect is still closed up, that will not be seen as a failure. If new hernias are created by the stiff mesh that will be considered a new problem. If the mesh stiffness itself causes inflammation during activity that will be considered a "mesh reaction", a new problem.

                  In the end, after mesh implantation, you have to develop a much higher awareness of what's happening in your abdomen, to decide what to do about it. Over the curse of the three years that I had mine at times I could feel tissue rubbing across it where it sat on my pubic bone as I pedaled a bike, I could feel it poking in to my groins when I crouched. I could feel the seam down the middle between the left and right side pieces at times. It turned in to a stiff plate-like material across my whole lower abdomen. Like a plastic bucket.

                  In many ways, the reasoning and solutions to the mesh problems show that the dynamics of the abdomen aren't being considered. They are thinking of it as a static "bowl" that just needs to be patched up. Considering the fact that when they do surgery there is no movement, it's not too surprising. Dr. Brian Jacobs even described moving a patients leg while operating to see what moved inside. A crude, and irrational way to learn, considering that there was no muscle tightening or tension, or torso twisting, or heavy breathing, just moving a lax leg. But it showed how he thought the abdomen worked while a person moved, like a static non-flexing bowl. Just a leg moving back and forth. It was surprising to see, it's in the video I posted a few days ago. Having had the mesh inside my while I moved I know that's not how things work.

                  So, you probably already know what's happening inside you. If you think that it is a stiff piece of mesh poking and pulling, well it's not going to get softer. It's going to stay that way. Since you had both sides done, you can compare one side to another to get a better idea of it's the mesh or not, if the pain is caused by tightness or just movement. I found that I could reduce my problems by reducing activity, but they came back with resumed activity. I suspect that many people who don't report problems just aren't very active.

                  Watch Dr. Kang's video in post #8 of the link below to get a better idea of how it works. Since you had a very small piece of mesh implanted, 1x4", compared to 6x6 inch pieces implanted laparoscopically, it almost seems like a surgeon would want to remove it just to get it out of the way so they can find your real problem. It's probably about 3/4" x 3" by now.

                  Wish I could add more. It's really an individual decision. Good luck.

                  Here is the link to Dr. Kang's video, post #8. https://www.herniatalk.com/7365-plea...the-human-body

                  Comment

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