1996-Pituitary Adenoma Removed--QUESTION

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I had a pituitary adenoma removed in 1996. They went through under the upper lip, through the sphenoidal area of my sinus to remove it. Everything went great and I went on to have three children after this procedure, which was the end goal. BUT....since 1996, I have dealt with an annoying sinus issue since healing. Whatever scar tissue is in my sinus CONSTANTLY develops a bloody scab on it and I have to clean it out at least 3-4 times a day. Its gotten to the point I have to use a sterile bobby pin I keep just for that to clean it out with because its so far back. Has anyone that has had this surgery, had to deal with this too? I'm 49 now and can't imagine doing this when I'm 80 or 90 years old and shaky. If I ignore it, by the end of the day, the dry mucus/blood is so thick and hard I can hear myself breath through that nostril. This is so embarrassing, but I just need to know if there is hope. What can I do? I would love for this to totally heal up and be normal and not carry a hair pin in my pocket every single day like I have for the last 22 years. Please help me.

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  • Posted

    Hi,

    I am very sorry for your circumstance.

    I too had a pituitary ademona removed, but through the nose and not the upper lip.

    I suggest you find a highly experienced ENT doctor, sometimes called "otolaryngologist" who will be able to look (with a camera) into the sinuses and suggest a solution.

    Good luck.

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  • Posted

    Hi,

    I am very sorry for your circumstance.

    I too had a pituitary ademona removed, but through the nose and not the upper lip.

    I suggest you find a highly experienced ENT doctor, sometimes called "otolaryngologist" who will be able to look (with a camera) into the sinuses and suggest a solution.

    Good luck.

    Report Reply
  • Posted

    Just to agree with Barney, it is time you got this resolved professionally. Sooner or later you are going to give yourself a nasty infection that will be a lot more debilitating that what you have today.

    (ENT = Ear Nose and Throat)

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    • Posted

      One more thing.

      In case the ENT you see recommend surgery, go see someone else. Surgery is NOT always the answer.

      For instance, I have a growth on my vocal cords. 3 ENTs wanted to cut into my throat. As if I'd let them without researching the matter thoroughly.

      Anyway I found one ENT who treats such growth with high dose meds for years.

      While some doctors warned me NOT to take certain meds for years, I thought "well if they cause me a problem in say 5 years, that is better than some butcher cutting into my throat HOPING he'll cure me".

      Bottom line: don't accept any solution until your instincts say "yes, that sounds right to me".

      Best of luck!

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    • Posted

      Odd... "different strokes for different folks"!

      If I had a growth, I would want it OUT! No way would I take a high dose medication for years unless totally convinced it was needed (especially if I lived in the USA where drug prices are such a rip-off) and the side-effects reasonable AND that it didn't clash with any other meds I had to take

      I do take a number of hormone replacement medications and will have to do so for the rest of my life. And I had a tumour out. So it is not theoretical.

      You might want a second opinion. But the idea of going to a series of ENTs until I found one who would tell me what I wanted to hear, makes no sense to me.

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    • Posted

      I doubt you'd rush to take the growth I have, if you had it. It's right on the vocal cord. If a surgeon misses a cut by 2 mm then I will be without a voice for ever. Also surgery on the throat is often unsuccessful and requires further surgeries in the future.

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    • Posted

      Again, it depends. My tumour had already caused me eyesight problems and were it not removed, I would certainly go blind. Just for openers.

      The neurosurgeon had to scrape it off my optic nerves. No 2mm margin in my case. But it was a choice between maybe go blind and definitely go blind, and the rest.

      The famous risk/reward ratio!

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  • Posted

    Sorry to hear this. I have not had an operation i do have a pit tumor. But I am getting this as well. My sinuses are always blocked and bloody at night i have to wake up and take a sinus advil. I am constantly cleaning my nose out with a q tip. This has been going on for a year. I was just about to call Dr about this when I Read this. S o this is very interesting to me. THANKS FOR THE SHARE!!!

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    • Posted

      YES! I too, use a Qtip on the daily to clean it out. Right now the air is so dry that its constantly sore too. I haven't called a dr about it yet. Trying to recover finances after Thanksgiving and Christmas right now. Our insurance is very basic so I need to look it over and see if an ENT would even be covered. If not, not sure what I'll do because I'm sure their pricey.

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