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More Tests!

Posted , 5 users are following.

Ace0310
Ace0310

Evening all! 

So another update on what seems to be something that has been going on forever, I recently moved from Nottingham to Birmingham so had to change consultants and have a fresh appointment over here just to confirm what we already know! Cushing disease caused by a macro pituitary tumour. I have also mentioned being referred to the genetics department due to having a nuro tumour on my appendix back in May. 

Having seeing my consultant he did confirm I have Cushing Disease (like we didn't know already) and just to "double check" as he said made me go for a CRH consisting of a blood test over a 3 hour period blood being taken every 5 minutes and then the last every 15 BORING! Then he said when the results from that get back my surgery won't be long after within the next 3/4 weeks of seeing him which is on the 29th November! 

Well I thought after that test it would be the end of it, but I have recently just received a letter for yet another test after my appointment with him in December for a IPS (Inferior petrosal test) which by reading up on it sounds horrid! Anyone had this done?

As my consultation is before the test I am going to question as to why I need this test done and whether I can just avoid having it completely I can't see why I would need this test done when I have already had 4 lots of urine 24 hour urine sample tests, 2 of the blood tests and the CRH test, plus an MRI confirming a tumour on my pituitary gland. The test doesn't sound great and i just want my op so I can stop feeling rubbish!! 

Any advise on why I would need this test too, could it be they think there is another tumour like on adrenal ? and any advise if anyone has had the IPS test done??

Thanks!

0 likes, 7 replies

7 Replies

  • Coc87
    Coc87 Ace0310

    Posted

    They refer to that test being the “golden test” it proper confirms if u have tumour on the pituitary gland and I think to which side it’s on (don’t quote me in that). I’d let them do the test if they are. U want them to be certain an u want them to be doin the right surgery. It not a pleasant test to have done. But every one experiences is different. Mine wasn’t great. But I’ve read where it hasn’t bothered people.

    It is a long process but u want them to be certain they’re doin the right things by u!  

  • courtnay26
    courtnay26 Ace0310

    Posted

    i hear you

    i wouldnt want that test either

    try to avoid it if you can

    ask them if they can avoid it if possible

  • vicky61456
    vicky61456 Ace0310

    Posted

    Hi As said before the sinus petrosal test is the definitve test.  It will also help the surgeon to find the exact position of the tumour.  It is not a pleasant test, I have had it done, but the staff will be very kind and will help you all they can.  I would advise having the test.  It takes a while but you will not be in pain, just slightly uncomfortable.  It is worth having done so that the surgeon knows exactly where to go during surgery.  If you want anymore information do not be afraid to ask, When I started this forum many years ago I promised myself that I would always say how bad things were and never try to give a false impression of what tests are like.  Do let us know how you get on.
  • courtnay26
    courtnay26 Ace0310

    Posted

    well, if the doctors want me to do the ipss

    I'm going to say no thank you.

    Hopefully the mri is enough

    • vicky61456
      vicky61456 courtnay26

      Posted

      Hi would just like to say that in my experience and others the tumour does not always show on an MRI, it may be too small or hidden behind the Pituitary Gland, hence the need for this test.
  • cycliccushings
    cycliccushings Ace0310

    Posted

    Ace

    The reason for this test is for your neurosurgeon to be EXACT in his approach to remove your pituitary tumor. For some reason he needs more clarification before operating on you. So if you decide not to do this test then you may be denied your operation as your neurosurgeon is not going to go in their unless he's confident exactly what he's doing. So balking at this test, thinking your surgery will happen soon is a error of understanding. I had this done for my first pituitary surgery in 1989, im sure they have refined this test considerably. It takes some time for the proceedure but you can count on the med personell knowing what they are doing. And no it is not painful. So I'm hoping you reconsider blatantly telling your surgical team you are not doing the needed test.

  • courtnay26
    courtnay26 Ace0310

    Posted

    Either way,

    the important thing is to find who

    do this surgery often and well

    hope your surgery goes well

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