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JenS

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JenS last won the day on September 20 2011

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About JenS

  • Birthday 05/15/1963

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    Jen_Schutte

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    New Jersey
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    Pit surgery by Dr. S. 4/28/04, removed ACTH secreting corticotroph hyperplasia and prolactinoma. Diagnosed by Dr. F. as cyclical pituitary Cushings. 2nd Surgery 7/21/04 for infection resulted in neuralgia. BLA in March 2006 as Hyperplasia returned. Possible Nelson's syndrome.

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  1. JenS

    Adrenal Gland Tumor

    What type of pituitary tumor did you have and was it ever treated (sad to ask that, but true - a lot of times they are ignored). Do you get copies of all your testing, MRIs and reports - and did you get pathology if you had surgery? Are you being followed by a pituitary center and a neuro-endo? Have you been tested at all for MEN? Multiple endocrine neoplasia? How is your ACTH? Lung tumors tend to throw off more ACTH if they are carcinoid and there are blood tests for carcinoid - have you had those tests. You have had the PET scan what about an octreotide? Why are you on pred? Is that your post-op replacement? Pred can have a lot of symptoms - how much are you taking?
  2. JenS

    So, he just wants me to blast my body with HC, weight etc. be damned - and forget everything else. I am less than happy.

  3. JenS

    I saw Dr Snyder today. He told me I never had Cushings ever and that my pathology was normal (he considers cortitroph hyperplasia even if it is ACTH secreting not to be a source of Cushing's) so in his mind, my BLA was medically unnecessary. That being said, I now only need to boost my cortisol up and I would feel better. This completely ignores my ACTH that has been rising anyway, and is a...

  4. JenS

    Hello Hope/Maggie Mae!

  5. Recently discovered that a relative thought to have died of thyroid cancer died of an adrenal tumor. Makes you think, huh?

    1. zoe

      zoe

      curious--was the tumor cancerous or cause some type of complication?

    2. JenS

      JenS

      It killed her at a young age - but the family has no real idea. But they think she was really sick, and I am not sick at all.

  6. There is a whole thread on here about depo and Cushing's. I had my tumor show up beforehand, but it was only after the depo that my symptoms went, well, all to heck...and my weight went totally out of control. Of course, it was all my fault. My gyne told me I should take up tennis (true story). Old thread - http://cushings.invisionzone.com/index.php...hl=depo+provera
  7. Good luck on your surgery!

  8. Hey Adina - start posting so people can get to know you and get the support that you need!

  9. Sending you a hug that does not involve you moving your shoulders in any repetitive motions.

  10. JenS

    Hi Anne! You are one complicated case! Keep on trucking.

  11. Would I be too much of a PITA to say... one with survivor, one without, and no years as that gets too complicated? Otherwise Amber is going to look funny wearing this - a year on the shirt, a year on her neck... it is going to cause accidents. Good thing she is in the business of helping them...
  12. I like the ribbon plain... but that is just me... I will get a few for gifts! Of course, large sizes... Wonder if my brother will wear one?
  13. Well, as much as I like the original... probably would be easier just to do a plain ribbon or without the word survivor - just Cushing's in the hump position and we would know where the inspiration came from. At least it may make people ask questions - both the hump and the position of the ribbon might make people think a bit... I hope. Might have to make the website a bit bigger - my prototype got too small.
  14. I think on the hump should be the "Amber tattoo". How would that be?
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