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Any suggestions?

Posted , 3 users are following.

Spikegirl
Spikegirl

Okay, so I've now had 6 surgeries for this stupid Disease... The last two were rhomboid flap repairs... I had an ultrasound 4 weeks after my last surgery and it showed more fluid building up, when I saw my surgeon last week she said my body is fighting against the healing process by producing fluid which means there are no more surgical options... I had a drainage done 3 days ago where they use the ultrasound to find the fluid and then stick the syringe in to drain it, they only got a total of 2ml out.. I'm at a loss, my surgeon is at a loss... No one seems to have any answers.. All I want is this to be over and the pain to stop.. Anybody been thru this and have any in site? Thankyouuuuu

0 likes, 4 replies

4 Replies

  • gill09
    gill09 Spikegirl

    Posted

    Hi what a terrible time you're having. My son has this problem and is now hopefully on the mend. He had an op with a fantastic surgeon but we had to pay privately. He had a difficult one to operate on and heal but so far so good. I have packed and cleaned it daily . Never missed a single day and altho it's not completely healed yet this is the best it's been. Surgeon is Emin Carapeti and he works from London Bridge hospital. He has not had one that hasn't healed and is def an expert in this area. The best money I ever spent on anything. Good luck x
    • Spikegirl
      Spikegirl gill09

      Posted

      I hope your son heals from this one and has no further complications! I love to hear success stories as it makes me feel like there is hope... I'm a 22 year old female, I can't work because of the pain, I also have a 3 year old son. I've been told it's genetic so I really hope my little fella doesn't go thru this hell! I'm in australia and have seen a total of 5 surgeons and 7 doctors over the past 2-3 years, my first rhomboid flap repair was done March last year and for 8 months I was in excruciating pain for 8 months, the doctors kept telling me it was nerve pain and kept giving me more and more pain killers until they finally discovered I had a big fluid build up, it was 10ml deep and 30ml wide, so I ended up having my second rhomboid done in December and I know that's only a month ago but I've still been in loads of pain and I just feel useless and angry that no one seems to know how to help me
  • rnarang
    rnarang Spikegirl

    Posted

    can wish u luck , as I am also under same boat.

    my internal stitch wasn't healing so minor surgery done... again now stitch from upper. layer open, again pus n all ... will get MRI done by next two or three days

    I don't know what s the problem why this is such a hell of situation ..

    can u tell me one thing. was there pain over ur stitches when they started to heal? if yes was it a normal skin heal pain or was dere fluid there aswell

    ?

  • gill09
    gill09 Spikegirl

    Posted

    When we were at the desperate stage that you are I relentlessly googled the Internet for help and found our surgeon. Maybe you could contact him and ask for any names he may know of. If you get a good one as we were lucky enough to do, they are so keen to help . He has worked abroad before, you never know , he may have some advice or a name? His name is Emin  Carapeti. Good luck😕
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