X-ray showing my VNS problem

Discussion in 'Your Living Room' started by tucker, May 2, 2008.

ATTN: Our forums have moved here! You can still read these forums but if you'd like to participate, mosey on over to the new location.

  1. tucker

    tucker The Meniere's DVD Guy!


    The mesh that THEY put in to hold my brain in has come out and attached to the neck muscle in my neck. If you look inside the white circle you can see what looks like a "scrubbie" that you wash dishes with and about that size,and then in the red area is where it is out of place and hooked to my neck muscle.

    What can they do about it...nothing! they don't want to do surgery because I have had so many on that ear.

    Just keeping you all updated!
  2. HeadNoise

    HeadNoise Invisible Me

  3. LisaB

    LisaB New Member

    Danny............that stinks. Lisa
  4. fcclimber

    fcclimber New Member

    That does stink. Do they think it will get worse, or do they think it's 'stable' where it's at?
  5. tucker

    tucker The Meniere's DVD Guy!

    They have no idea.....all I know is it causes rotational quick spins if I turn my head just a right way and it swells up all the time and I have to ice it down. My roommate wants me to get an lawyer!

    I actually think that it is causing my MAV also and it makes it difficult for me to keep my head down like if I am writing or doing craft work.

    Nowadays they put in a plastic shield instead of the mesh. I had mine done in Dec 2005.
  6. livestrong

    livestrong New Member

    so sorry :'(
  7. jim1884again

    jim1884again advocating baldness be recognized as a disability

    Bummer Tuck--hope it remains stable
    is it the "fishing line" mesh like I have for one of my two hernia repairs?
  8. tucker

    tucker The Meniere's DVD Guy!

    that is right! I had a double hernia and that is how they repaired it, for that they said they put in over 500 stitches to hold that mesh in place.......either that or they used one of those 6 pack rings! lol
  9. tipsy

    tipsy New Member

    What are they afraid will happen if they go in and fix it, or replace it w/ the plastic shield? If it is causing you so much misery maybe it would be worth it. Btw I agree w/ your roommate you should sue them for the new surgery and/or pain and suffering.
  10. holding on

    holding on New Member

    OMG!!! that looks horrible! No wonder you get quick spins. If its attached to the neck muscles, its probably got some nerves too!! I cant imagine!!! Can you get a second opinion on another surgery? It would almost be worth it, just to get some relief and possibly a much better future!! Best of luck! Its not fair that you have to just live with it.
  11. GinaMc

    GinaMc Me and my friend Sally :)

    Cripes Danny that is not right. so what did Dr. W say about it? He won't do any surgery for it either hey? he pretty much told me that there was nothing more he could do for me and said I should see Dr. Timothy Hain from Chicago... I saw my neurologist and she said that was BS and the latest CT scan that I had that read I had a spinal fluid leak and the bone defect protruding into my posterior mastoid needed to be looked at by another surgeon too so she is in the process of trying to find me another surgeon that deals with MM or this type of stuff at either Mayo or Madison.. do you know of any?

    sorry that you are having such a hard time but if I find a doctor that would be willing to do a second opinion on me I will let you know to see if maybe he/she could help you as well. hang in there. thinking of you.
  12. utalledo

    utalledo Paradise

    Oh men!!!! That really sucks!
    Try to find another way.....I agree with your roomate, get a lawyer and try to fix it!

    Good luck Danny.
  13. Amethyst

    Amethyst She believed she could, so she did.

    yuck Danny, that's horrible. Please go get a second opinion. I understand how tricky it may be to remove considering it's right up in the neck muscles but hopefully someone can find you some relief.
  14. Wobbles

    Wobbles Storm (April 15, 1992 - November 17, 2006)

    I agree with Amethyst: get a second opinion. It would really be unfortunate for you if you do not get it fixed when it is just what the doctor orders. Joe
  15. dizzjo

    dizzjo One day at a time & baby steps!

    I agree with getting a 2nd opinion.

    I always warn people of all the risks of surgery like this. I am so sorry this happened. :( ???

    I wish that sometimes we could turn back the clock and do things over.
  16. jabber

    jabber New Member

    What a BUMMER Danny, don't give up, there HAS to be SOMETHING that can be done...
  17. June

    June New Member

    Who is 'they'? Have you been to House or Mayo or Johns Hopkins?
  18. Linda1002

    Linda1002 New Member

    ......... :(
  19. MedievalWriter

    MedievalWriter Ryan's Rose Pvt Ryan Winslow KIA Iraq 4-2006

    Oh man, Danny...what a choice before you.
  20. LisaB

    LisaB New Member

    Danny, could you see another surgeon for a 2nd opinion? Lisa

Share This Page