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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

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