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IPSS Cushing’s

Posted , 6 users are following.

camilla123
camilla123

Hi all, me again!

I’m having an IPSS before i have the surgery and I’m VERY nervous about it as I have a fear of needles!! 

Has anyone else had one (where they put the needles/wires up through the arteries in your legs and up through your neck and into your brain...?!) 

Would love to know your experiences! 

Xxxx

0 likes, 13 replies

13 Replies

  • cycliccushings
    cycliccushings camilla123

    Posted

    Camilla

    Yes i have but it was many many years ago. I think I was very optimistic as I knew that this proceedure was necessary for my surgeon to know exactly how to approach the surgical removal of the pituitary tumor. I do remember that everything went smooth ...the nurses and dr were very supportive and kept me comfortable. I'm sure you will do just fine. Please keep us posted here as we all care how you are doing.

  • vicky61456
    vicky61456 camilla123

    Posted

    Hi yes I did have that IPPS.  It is not pleasant but it is not as bad as you fear re:the needles.  You may experience a sense of the wire going through your body but I had another injection during the procedure which made me feel quite good!  There is nothing to worry about, there is a nurse at your head all the time to tell you what is happening.  It is not painful at all!  The procedure is a must because it will tell the surgeon exactly where the tumour is and help him to know exactly where to go.  The staff will explain all this to you.  Don't be scared, it is another huge step forward to getting better.

  • camilla123
    camilla123

    Posted

    THANK YOU both!! Makes me feel a lot better!! 

    Xxx

  • Coc87
    Coc87 camilla123

    Posted

    Hi. I remember that test well. But it’s a must. The golden test it’s refered to. So I hope it is golden for u An gives ur docs the answers they need. For me it wasn’t a pleasant experience. But the nurses an doctors are right beside u, an asking do u feel ok. So if u ever feel unwell just tell them. I did pressure in my head An could hear the wires wat felt like was in my ears but they’re not. An after wards I was very red, jus due to the contrast but I would b a bit sensitive that way. I was fine after. U lie for so many hours after an then off u go home. It definitely worth havin done. But not a test I think anyone would run back to get done unless necessary. You’ll b grand. Just think loads of ppl have had this done An you’ll get thru it. X
    • camilla123
      camilla123 Coc87

      Posted

      Thank you! Good to know as I’m REALLY SCARED but you all have made me feel a lot better about it! Xxxx
    • Coc87
      Coc87 camilla123

      Posted

      I was really scared too. But I knew it had to be done. An kept sayin to myself, loads of people have had this before an they were ok. Only natural to be nervous. But the sooner done then one step closer to surgery for u. X
  • Ace0310
    Ace0310 camilla123

    Posted

    Hi!

    I had the test in decemeber 2017 and it was nothing to worry about it sounds a lot worse than it is. Its more uncomfortable than painful. To be honest i found the 2 hours lying flat on your back afterwards the most boring thing!!

    Im still waiting for my surgery i have an appointment with the clinic tomorrow wish me luck ha! I hope things work out well for you and things move quickly i understand how hard it is! Let us know how you get on!

    • camilla123
      camilla123 Ace0310

      Posted

      Thank you! Good luck with everything and let me know how it goes! Do you know when your op is? Seems long to wait!!

      Xxx

  • courtnay26
    courtnay26 camilla123

    Posted

    I've never had it done but I've read lots about it

    I suggest you could read patient stories from major hospitals

    Personally I would avoid it but that is just me

    I would ask them for an mri instead

    I wouldnt feel comfortable with a needle like that

    My feeling is that they should already know where my tumor is

    Sorry, im probably no help at all

    Some say it is no trouble but there are risks

    • vicky61456
      vicky61456 courtnay26

      Posted

      Hi Courtney,  We know that you feel strongly about the IPSS test but it really is absolutely necessary to locate the tumour, an MRI is not enough to show the surgeon the precise situation of the tumour.  We have most of us gone through it and it is NOT that bad.
    • courtnay26
      courtnay26 vicky61456

      Posted

      Yes, your right

      It might be a very helpful test

      I dont recall enough about it right now

      Thanks

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