News Feed Discussions Hernia Mesh Hell for almost 15 years

  • Hernia Mesh Hell for almost 15 years

    Posted by MeshMangledMerritt on August 14, 2019 at 1:05 am

    Had right side ilioinguinal hernia repair done on army active duty in 05 and have been in constant pain ever since. In my op report the surgeon said he “intentionally sacrificed my ilioinguinal nerve to prevent post op pain”. He used a Lichtenstein repair with Prolene Mesh and 2-0 prolene sutures. After I was medically discharged In Oct 07, I saw a specialist in Connecticut, Dr Sedlack, who diagnosed me 1) lateral femoral cutaneous nerve syndrome, 2) entrapment of the general branch and general femoral nerve, 3) Meshoma, 4) Spermatic Chord entrapment and constriction with vas deferens impingement, 5)Post ejaculatory and testicular pain.

    However, even with all this my doctors at the VA ignore these diagnosis and instead tell me it’s “impossible for me to be in so much pain from this procedure”. I only have VA health care or I would see someone on the outside.I don’t know who else to turn to and hope someone in here can assure me that I’m not crazy and that is the mesh and operation that has left me crippled and walking with a cane these past 14 years.

    MeshMangledMerritt replied 4 years, 5 months ago 5 Members · 29 Replies
  • 29 Replies
  • MeshMangledMerritt

    Member
    October 5, 2019 at 3:32 am

    Bump for easier to find access next week when I see Dr Brown

  • MeshMangledMerritt

    Member
    August 25, 2019 at 4:55 am

    Got the call from the VA yesterday. They are going to send me out for community care. Getting closer to getting this resolved

  • MeshMangledMerritt

    Member
    August 21, 2019 at 1:23 am
    quote DrBrown:

    [USER=”2967″]MeshMangledMerritt[/USER]
    If you can make he trip to see me, I can examine you and then write a letter on your behalf that you can use to try to get the VA to let you go outside of the system.
    Also, complain to your local congressman/woman.
    Regards
    Bill Brown MD

    Hey doc

    I’ve been to the VSO and VA today.

    the VSO says your letter must contain

    * Nexus or origin of this pain – which is of course the operation in 05

    * All secondary conditions relating to it (nerve entrapment, spermatic chord adhesion, etc)

    * if there will be any long term issues related to the mesh

    The VA told me

    They have put in for gen surgery consult. once I schedule to tell them I want community care and THEN request my community care surgeon refer me to you and that is how and the only way the VA will cover it.(surgery)

    Thoughts? Should I still call your office and schedule a consult? It could take months before the VA approves the surgery itself

  • MeshMangledMerritt

    Member
    August 20, 2019 at 5:41 am
    quote DrBrown:

    [USER=”2967″]MeshMangledMerritt[/USER]
    If you can make he trip to see me, I can examine you and then write a letter on your behalf that you can use to try to get the VA to let you go outside of the system.
    Also, complain to your local congressman/woman.
    Regards
    Bill Brown MD

    I would have to let my gf know a good day since I can only drive around town but the good news is you’re only 3 and a half hours away and she’s already said she would be more than happy to accompany me!

    Thank you Doc! I will call your office this week to set it up

  • DrBrown

    Member
    August 18, 2019 at 3:15 pm

    [USER=”2967″]MeshMangledMerritt[/USER]
    If you can make he trip to see me, I can examine you and then write a letter on your behalf that you can use to try to get the VA to let you go outside of the system.
    Also, complain to your local congressman/woman.
    Regards
    Bill Brown MD

  • MeshMangledMerritt

    Member
    August 18, 2019 at 1:49 am

    Just got my letter from the VA, they are refusing to change my doctor. Looks like I’m stuck with the one who said “Its impossible to be in this much pain from the mesh!”

  • MeshMangledMerritt

    Member
    August 17, 2019 at 10:35 pm

    I’m an idiot. My mesh is Prolene mesh. Prolene is trademarked by Ethicon, Johnson and Johnson. Went to my congressman so here’s hoping the ball gets rolling here.

  • MeshMangledMerritt

    Member
    August 16, 2019 at 4:31 am
    quote DrBrown:

    [USER=”2967″]MeshMangledMerritt[/USER]
    Dear Merritt.
    You need to make lots of noise to get the VA to listen to you.
    Do not hesitate to contact you congressman or congresswoman with your story.
    Your best chance for improvement is to have the mesh removed with a neurectomy.
    You can print the following articles as evidence that mesh needs to be removed.
    https://www.sportshernia.com/treating-mesh-pain/reference-articles/

    Regards.
    Bill Brown MD

    Thank you for all your help doc it was a pleasure to talk with you. Thank you for the links and letter. I will get those to my docs and the VA

  • DrBrown

    Member
    August 16, 2019 at 3:42 am

    [USER=”2967″]MeshMangledMerritt[/USER]
    Dear Merritt.
    You need to make lots of noise to get the VA to listen to you.
    Do not hesitate to contact you congressman or congresswoman with your story.
    Your best chance for improvement is to have the mesh removed with a neurectomy.
    You can print the following articles as evidence that mesh needs to be removed.
    https://www.sportshernia.com/treating-mesh-pain/reference-articles/

    Regards.
    Bill Brown MD

  • MeshMangledMerritt

    Member
    August 15, 2019 at 9:09 am
    quote Arkj93:

    Hi Merritt,

    Good luck to you and please keep us updated. I’m not sure what the process is like but if I were you I would be fighting like hell to have the VA approve the case. There are of course other options that could help with the bills too. Here is a link to a short article about medical debt:

    https://www.npr.org/2019/02/14/69467…m_term=nprnews

    Whatever happens, just don’t give up. Just be confident that you will be able to find the right doctor who will acknowledge your situation and be able to give you your life back. You’re already on the right path by coming to this forum and reaching out to Dr Brown.

    We’ll see. I sent all my record I could in email. You’ll have to forgive me for not sending pics of my naked body I’m not about to do that. I know his site says to but I sent all medical records instead

  • Arkj93

    Member
    August 15, 2019 at 3:35 am

    Hi Merritt,

    Good luck to you and please keep us updated. I’m not sure what the process is like but if I were you I would be fighting like hell to have the VA approve the case. There are of course other options that could help with the bills too. Here is a link to a short article about medical debt:

    https://www.npr.org/2019/02/14/694670747/rx-for-medical-debt?utm_source=facebook.com&utm_campaign=npr&utm_medium=social&utm_term=nprnews

    Whatever happens, just don’t give up. Just be confident that you will be able to find the right doctor who will acknowledge your situation and be able to give you your life back. You’re already on the right path by coming to this forum and reaching out to Dr Brown.

  • MeshMangledMerritt

    Member
    August 15, 2019 at 2:04 am

    Sent email to Doc Brown after speaking with his office. Fingers crossed for me brothers and sisters

  • MeshMangledMerritt

    Member
    August 14, 2019 at 10:48 pm
    quote Arkj93:

    Hi,

    Yes that article was written about our own [USER=”2608″]dog[/USER], he was very active on this forum for a while about his positive experience with Dr. Brown. If you want, you should be able to look up his posts. Dr. Brown is a very talented surgeon who performs no-mesh surgery and I believe he is capable of removing mesh openly as well although from what I have heard, removing mesh with the open method is a bit tricky. That being said I think it would be in your best interest to at least call his office and set up a consultation. Make sure to explain your situation with the VA and I’m sure his office would be willing to help you.

    In my opinion, it is a shame and should be criminal the way the VA has treated someone who is in your condition. There is absolutely no one on this forum who will tell you that what you are feeling is not real and that it is inside your head and that goes for the doctors on here as well. It is unfortunate that you had to go through this for 15 years just to find answers to your problem. That’s why I am confident that in the right hands you can get your life back on track.

    Good luck and please keep us updated on your progress.

    I called his office but I’m gonna need to get referred out by the MISSION ACT for consultation first

  • Arkj93

    Member
    August 14, 2019 at 2:10 pm

    Hi,

    Yes that article was written about our own [USER=”2608″]dog[/USER], he was very active on this forum for a while about his positive experience with Dr. Brown. If you want, you should be able to look up his posts. Dr. Brown is a very talented surgeon who performs no-mesh surgery and I believe he is capable of removing mesh openly as well although from what I have heard, removing mesh with the open method is a bit tricky. That being said I think it would be in your best interest to at least call his office and set up a consultation. Make sure to explain your situation with the VA and I’m sure his office would be willing to help you.

    In my opinion, it is a shame and should be criminal the way the VA has treated someone who is in your condition. There is absolutely no one on this forum who will tell you that what you are feeling is not real and that it is inside your head and that goes for the doctors on here as well. It is unfortunate that you had to go through this for 15 years just to find answers to your problem. That’s why I am confident that in the right hands you can get your life back on track.

    Good luck and please keep us updated on your progress.

  • MeshMangledMerritt

    Member
    August 14, 2019 at 7:19 am

    https://www.meshmedicaldevicenewsdesk.com/one-week-from-hernia-surgery-to-swimming-in-hawaii/

    this is him right? I literally have tears running down my face reading about this guy. To think I’ve been in such pain for 15 years and not 4 hours away is someone who could cure me and yet it seems like it’s so far away. He doesn’t seem like he’s like other doctors I’ve seen who treat me like it’s all in my head. He seems like someone who could really do this job right and fix me. Should I just call his office tomorrow or what?

  • MeshMangledMerritt

    Member
    August 14, 2019 at 6:46 am

    I see doc Brown is in the Palo Alto area. If that’s him then I should be able to get the VA to send me to see him through the MISSION ACT. Which would alleviate my financial concerns about getting this done.
    ​​​​​

  • MeshMangledMerritt

    Member
    August 14, 2019 at 6:43 am
    quote Arkj93:

    Merritt,

    I see that Jnomesh and Good intentions both chimed in here as I thought they would. It is clear to us that while your situation is very dire, you may not be getting the best care from the VA that you need. We have seen this kind of thing on the forum before, the VA is a government run medical system with hundreds of thousands of patients and that system is clogged with lots of red tape. Mesh removal is a risky surgery especially when performed openly so we are just trying to convey that you need a competent doctor to perform it. Although it seems like your case is severe enough and that the mesh is definitely causing your pain. That being said the doctors on here won’t be able to make a diagnosis unless you are willing to see them in person. If I am correct, you may be able to set up cash payments with Dr Bill Brown in CA he definitely should be able to help you. The VA is great for some things but I’m afraid not in extreme cases like yours where their doctors have already caused you enough damage and suffering.

    Good luck on your journey to recovery.

    Doc Brown does seem like he’s in my area of Norcal or close enough to it anyway. Maybe I can get the VA to send me out to see him.

    I know the mesh needs to come out, I know I need to see someone outside the system, I would have no qualms about doing so I just need to talk with him before hand to set my mind at ease. You gotta understand I have severe PTSD from all this.

    They labled me a malingerer in the army. Do you know what they do to you when your chain of commander labels you that? It was a year and half of pure hell until I was finally medical boarded out on top of the mesh complications. It’s very hard for me to leave my house even today. I only go shopping at night and I stay away from people.

    All I’m really asking is if he is on here just to talk with me about some things and set me ease I agree with you all I just wanna cross Ts and dot some Is you know?

  • Arkj93

    Member
    August 14, 2019 at 5:00 am

    Merritt,

    I see that Jnomesh and Good intentions both chimed in here as I thought they would. It is clear to us that while your situation is very dire, you may not be getting the best care from the VA that you need. We have seen this kind of thing on the forum before, the VA is a government run medical system with hundreds of thousands of patients and that system is clogged with lots of red tape. Mesh removal is a risky surgery especially when performed openly so we are just trying to convey that you need a competent doctor to perform it. Although it seems like your case is severe enough and that the mesh is definitely causing your pain. That being said the doctors on here won’t be able to make a diagnosis unless you are willing to see them in person. If I am correct, you may be able to set up cash payments with Dr Bill Brown in CA he definitely should be able to help you. The VA is great for some things but I’m afraid not in extreme cases like yours where their doctors have already caused you enough damage and suffering.

    Good luck on your journey to recovery.

  • MeshMangledMerritt

    Member
    August 14, 2019 at 4:38 am
    quote Jnomesh:

    Unfortunately there are only a handful of surgeons in the US or In the world for that matter that can competently remove hernia mesh.
    If the VA doctors are denying you or saying that you will be worse off after mean removal it is code for they don’t have the skill/experience to remove your mesh. And believe me you can be made worse off after mesh removal by a surgeon who doesn’t have the skill set needed-which is probably 99% of all surgeons.
    Maybe consider a go fund me forum in FB to raise money for your surgery and travel expenses.

    I’d feel a lot better if a doc would chime in here and tell me about the procedure and that I’m not Looney tunes for having these symptoms. Understand my trust level is very low and I don’t just rush into things blindly without knowing more about what’s happening. I did that before and that’s why I’m in this mess.

    I also don’t have facebook. Message boards like these and Reddit is the most I “social media”. To me there’s no point. Everyone I know or grew up with has kids and family or they go on trips or lead an active life. I’m literally stuck in my house or bed most days why would I want to broadcast that out into the world?

    so yeah Facebook isn’t for me.

    I don’t mean to come off as dismissive of your suggestions I’ve just been misdiagnosed and lied to or abused so much in the past 15 years that I’m very jaded to say the least

    Edit – I am talking with a lawyer now who thinks he can go after the mesh manufacturer for compensation and if that goes well I can afford surgery then but that’s the only logical way I see that happening

  • Jnomesh

    Member
    August 14, 2019 at 4:25 am

    Unfortunately there are only a handful of surgeons in the US or In the world for that matter that can competently remove hernia mesh.
    If the VA doctors are denying you or saying that you will be worse off after mean removal it is code for they don’t have the skill/experience to remove your mesh. And believe me you can be made worse off after mesh removal by a surgeon who doesn’t have the skill set needed-which is probably 99% of all surgeons.
    Maybe consider a go fund me forum in FB to raise money for your surgery and travel expenses.

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