Discussions By Condition: Medical Stories

ginny pig

Posted In: Medical Stories 2 Replies
  • Posted By: Anonymous
  • January 14, 2008
  • 06:53 AM

well i have had 35 operations on my ears it started when i was 6 and had my last one when i was 12 . the docyors at first didn't know what it was then they finaly figured it out it was cholestiatoma i probaly spelled that wrong sorry..then they did more surgerys to figure out how to get rid of it then the antibiotics they tryed wich never were used before so i got to be there ginny pig and i had a reaction to all of them the pain the sickness and then they would desence atise me so they could try it then after all the needles and the skin graph they closed my right ear off inside and stayed in the hospital for 3 months this all happened in boston now im 22 a...but is always fear and wundering when the day is gonna come when it comes back and now theres alot of stuff on colestiatoma back then u couldnt find anything on it and the doctors are saposed to chek ur ear every year with a ct to make sure its fine but they havent done that in years they just tell u oh its fine when they cant even see inside my ear so how would they know .and i whent down there 2 years ago when i was 8 months pregnit and its a 2 hour drive for me to get to boston and they wouldnt see me cus of some bill that was from before i was 18 and they wouldn even tell me the amount that was wierd and they call the doc up and he refued to see me i was mad as ***l him and all the other ones that tryed all the new drugs on me and used me for a medical show and all the cars the doc probaly got just off my 7 hour long surgeries alone and he wouldnt see me cuz of a bill i sapoesenly have before i was 18 and i had insurance back then im still mad and i just read a story how a guy had colestiatoma and his ear ws closed off and of course he not gonna show the main signs of colest so the doc told him he was fine well the drainage had no where to go so it leaked tarwds his brain and almost cuzed brain problems and his face to paralyse that scared me and made me feel bad to most doctors we dodnt mean anything to them they look at us as a medical show for them and money thats why we should put certain doctors threw everything they put us threw and see how they feel afterwards ....please if you have a child who has cholestiatoma or anything dodnt let the doctors the medicine specalist use them for a giny pig dodnt let them try 1000 of drugs on them now after everything the one main side efects of the drugs they tryed on me was they damaged my teeth they leave them permantly weak so now i hve to keep paying every year or 2 to get my teath fixed and everytime i do it upsets me and i get mad cuz people dodnt know what happen to you so they always asume something wrong and i brush my teeth 2 a day i even floss everything but it wont matter well sorry to talk so much on i just dodnt have no one to talk about it with

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2 Replies:

  • Poor you.Try a teaching hospital maybe.
    chrismia 159 Replies
    • January 15, 2008
    • 05:38 PM
    • 0
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  • Poor you! is not the correct response for a person who has been through all that you have. The reason that you are having such an incredibly difficult time is that not only are people being judgmental at a time that you are vulnerable and in need, they also have no idea that the nerve damage and possible recurrent infections in your ear are causing you to experience sadness, isolation, and much confusion at a deeper level than they could possibly "get." You need to find a therapist who is able to help people experiencing chronic illness and all that it entails. You need to find people you can rely on when you are experiencing difficulties with life even though the surgeries are over. Post-operative care is lacking in our society. However, there are all the answers and people we need to help us if we keep seeking the help we need and find ways to heal the rest that we can on our own. Bless you. I have experienced confusion, dizziness, weak body, weak teeth, broken relationships, and a broken family because my emotional state after all I had been through made me behave in ways that were not usual for me. People suck who don't understand and lay judgments instead of helping. Stay away from those people. I am much better now that I have survived all the suffering and found strength in all my weaknesses. The people in my life are amazing and I feel amazing, even though I still suffer and get sick and tired a great deal. People accept me for who I am because I have learned to accept myself. You can do it to, but it is not easy. Find love in your heart and share that love as much as you can with others. Just wait and see what happens! Good luck...
    Anonymous 42789 Replies Flag this Response
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