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pendulous abdomen

Posted , 4 users are following.

nrosado3
nrosado3

I've had Cushing's disease for about nine years of my life and now a survivor feeling very blessed very healthy but left with cosmetic appearance problems. Does insurance cover the cost for pendulous abdomen surgery ?

0 likes, 11 replies

11 Replies

  • vicky61456
    vicky61456 nrosado3

    Posted

    Hi there, So nice to hear from you and glad that you are feeling healthy.  I had the same problem after I lost my 4 stone but over the years it has improved.  I can't help with the insurance question as I didn't have health insurance.  Have you asked your GP what the best way forward would be? Surely there is an NHS operation? Hopefully some of the others will have more advice for you.  Take care and do keep in touch.

    Vicky

  • KarenNY
    KarenNY nrosado3

    Posted

    So glad to hear that you are feeling good now after your long ordeal with Cushing's.  I am also feeling about a trillion times better after my decade of suffering from this cruel disease.  I had an ACTH producing pituitary tumor removed in 2003 and am very blessed to be cured.

    Although my body has suffered greatly at the hands of long term extreme levels of cortisol, it is not overly deformed.

    But, I definitely understand your question. I have lost a lot of weight since surgery.....but not all that I really need to.  I have wondered recently, also, if I lost the rest of the weight, would my insurance cover the removal of the excess skin.

    I do not know the answer.  But, I do hope that someone else here will help you. It seems that if your present cosmetic issues are more then just cosmetic that your insurance company should seriously consider covering any procedure that you need.  If you can convince and prove that, medically, you need the surgery, they should consent.

    One of my really, really bad symptoms with Cushing's was horrific boils, welts on my face......including huge sties on my eyes.

    A lot of insurance companies consider laser removal of the sties as cosmetic.  Thank goodness my insurance covered this for me.  I had to take low dose antibiotics for a whole year to keep the boils under control.  

    After pit surgery....all my ailments and symptoms subsided.....within 2 months. I do still have scars on my the skin surrounding my eyes from the sties that were zapped.

    I just wanted to respond to let you know how happy I am that you have survived well! It is so awesome to be on the healing side of Cushing's.

    Sometimes I forget how ill I was.....and nobody but another Cushing's patient understands what it was like.

    I wish you well with your cosmetic issues.  

    Take care of yourself.

    • vicky61456
      vicky61456 KarenNY

      Posted

      Hi  and welcome to the site.  It's great to have all of you contributing.  I started the discussion because I felt so alone in my feelings.  I think that after a while you do forget how very ill you were!  Tahnks for replying and hopefully someone out there will know the answer to the cosmetic surgery, after all it is the left over of a dreadful disease not just a fanciful idea!! Take care all.
    • vicky61456
      vicky61456

      Posted

      Sorry I also meant to say that I had not heard of the awful side effects that you suffered Karen.  Very glad that you got the help you needed.
  • fiona85181
    fiona85181 nrosado3

    Posted

    Hi

    I was offered surgery on my arms following my weight loss of ten stone due to cushings. They upset me more than my tummy as they were visible in short sleeved tops.

    • fiona85181
      fiona85181

      Posted

      Sorry meant to say that was on NHS.

      Hope that helps!

    • vicky61456
      vicky61456 fiona85181

      Posted

      I put a short sleeved T shirt on when it was sunny and could not believe my arms looked so awful.  Was the op a success?
    • fiona85181
      fiona85181 vicky61456

      Posted

      I didn't have the op as my cortisol increased again. Following pituitary surgery they told me I have an ectopic tumour which they still haven't found so don't want to have surgery and then swell up again so hoping and praying they find my second tumour and then I can have the surgery!
    • vicky61456
      vicky61456 fiona85181

      Posted

      Hi all,  Jazzy anne has asked if an MRI with dye would show the tumour up.  My MRI didnt show anything so I then has Petrosal Sinus sampling.  Does anyone have experience of MRI's for her.
    • fiona85181
      fiona85181 vicky61456

      Posted

      I have had many MRI and CT scans both with dye and isotope solution to try and find my ectopic tumour but to date they have all been unsuccessful.  I have also had petrosal sampling and althought that indicated a "hot spot" when they scanned that specific area nothing was seen on the scan results.

      Sadly the tumours can be so tiny that they are not visible as in my case!

      I have also had a few PET scans too but again they were unsuccesful in finding it!  I am fortuntate that I have a medical team who havent given up on me though and everytime something new comes up at a metabolic conference I am offerred the tests.  13 years is a long time to be continually undergoing tests but I am fortunate that the medication is keeping my symptoms fairly well under control!

      Sorry I cant be more positive about the dye but it really depends on the size of the tumour in my experience.

       

  • KarenNY
    KarenNY nrosado3

    Posted

    My pituitary tumor was 5mm.  Very small......but, thank goodness it showed up on the MRI.

    My awesome neurosurgeon removed it successfully.....had to take part of the pituitary gland with it.

    But, the gland started working fully on its own within a few months.

    I have been Cushing's-free since 2003.

    I feel blessed and cannot imagine what it may have been like if the tumor could not be found.....or if the source was unknown. My heart goes out to you.

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