Need advice!!

Posted , 4 users are following.

I'm 41, had total hysterectomy last year and found a cyst on my pituitary gland last year. My hormones can't regulate even though I take hormone replacement therapy. The anxiety, headaches, dizziness, blurry vision, fatigue, etc etc is killing me slowly. I used to be one of the most energetic people ever and now it takes the life of me to do anything. I'm having a second MRI to Che k for growth. Can that cyst be causing me not to level out? Any suggestions? I'm scared to have it removed but I think this is the culprit of my on going issues. Has anyone had the surgery? Do you feel better? i would be ever so grateful for anyone who's gone through this to share their experiences. Thank you soooo much!!!

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  • Posted

    I had the transphendoail( spelling?) surgery in February of 2017, where they go up through your nose and take out the tumor from there. It went pretty well but some was still stuck onto my pitituary stalk so the do to decided to leave it rather than risk tearing my stalk and that would affect my hormones. I am aback on cabergoline now and the tumor hasn't grown any more in a year but it also hasn't shrunk. Before I was put in the medicine back in 2014 I used to have really blurry vision and tired all the time, like it was too much to keep my eyes open. But after going on the cabergoline within a week or two I felt much better. My vision is completely fine now. 

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    • Posted

      Thank you so much for replying!!! I feel so alone and nobody to talk to. Can I ask how big your cyst was? Did it take long for you to recover? Are you feeling much better? How long was the surgery? I really can't thank you enough for your input! Do you find it helping you balance out your hormones? Thank you again and again for the info!!!!!

      Jenn

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    • Posted

      I can't remember the exact measurements of it, I'd have to go back and look at the MRI results. It took me a good 3 weeks after the surgery to recover. The surgery felt like you got punched in the head. Bad headaches all day, I couldn't stand the light either. I probably had a harder time with the pain because I found out the pain meds prescribed to me made me sick to my stomach and throw up. So I was on Advil and ibprofuen. For almost a year after, every time I would blow my nose is get blood but they said it was normal. Now everything is back to normal now.

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  • Posted

    Hang in there. You’re definitely not alone. It’s a lot more common than you would ever think until it happens to you. Once i started talking to people about it, I found a surprising number of people who knew of others with a similar condition. The important thing is that you discovered it and are receiving treatment. It’s all too common for people to suffer with the symptoms for a long long time before discovery. 
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  • Posted

    Hi jennifer

    If it were me, I'd have the surgery

    The main thing is to find a well qualified pituitary surgeon

    This should be a piece of cake to remove

    And you'll feel a lot better

    Look up Daniel Kelly at the

    Pacific neuroscience institute

    He is a very good surgeon

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    • Posted

      Thank you so much for the recommendation! I will look Daniel Kelly up today. I'm feeling better and better with these responses! Thank you EVERYONE for taking the time out of your day to reply!! It means the world to me! 

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  • Posted

    My adenoma was 35mm (eyball size). My experience of the trans-phenoidal surgery was a lot better than other people report. I really didn't suffer at all and couldn't understand why the nurses kept trying to give me pain killers. It's not like I have a high pain threshold, I'm a total cry-baby! I was fairly exhausted for 2-3 weeks and it took about six months for the vision in my right eye to fully recover [it had blurred out suddenly a couple of weeks before the op due to the adenoma pressing on the optic nerve).

    I think that a cyst [literally, a water bubble] is a lot less significant than an adenoma [growth] so the op will be a lot less significant. No surgery is trivial but nowadays this one is way down the list of risky procedures.

    Do please remember that, although the pituitary is in your skull, it is not in your brain. You will not be having brain surgery!

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    • Posted

      Wow yours was pretty big! I thank you tremendously for the input! Are you glad you had it done?? I hear ya on the surgery thing! I needed to hear this!  Do you feel better? Did you have dizziness while you had your cyst thingy?
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  • Posted

    I had transphenodial surgery, they go up through your nose, about 2 years ago. The Nuerosurgen removed about 90%of my tumor but part of it was left since it was on my pititary gland stalk and it was too risky.

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