Pituatry tumour

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I’ve been diagnosed with a 8 mm prolactinoma but it’s causing me to have so many other problems I just want it out I’ve tried cabergoline but that made me feel awful I just want it taken out but I don’t think doc will probably more meds thing is with the meds it will never go cause once u stop taking it it starts to grow again, has anyone had there’s taken out with surgery x

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  • Posted

    Hi Emma although I haven't had surgery (there seems to be quite a high recurrence rate with  this option) i have been in Cabergoline for almost a year and would be delighted if a doctor could guarantee I could take this for life. If you are able to say why this hasn't suited you I would be interested as I do wonder whether my sudden drowsiness during the day could be down to the meds. It has certainly reduced my prolactin though. 

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  • Posted

    Hi Emma, I had similar issues so my doctor dropped me down to a very low dose of cabergoline.  After about 2 months, the side effects (knitting needed to my head) finally went away.  A year and a half later, my macro prolactinoma is now too small to see in a MRI and my life is good again.  I’d recommend staying with the cabergoline and just get good at splitting pills in quarters.  A little bit of that stuff goes a long way.
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  • Posted

    Why won’t your doctor remove the tumor? I take cabergomine and it keeps my growth hormone at a normal level and I don’t have any adverse side effects but I had my tumor removed. From what I understand if you still have a tumor, you need the injectible, Somert or something like that or you need radiation type drugs. Are you seeing an endocrinologist or family doctor? I wish you luck. 
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  • Posted

    No still got mine but the cabergoline initially was horrible but it did get better.  It’s worth preserving with the medicine as even if they take it out there is still always a risk it can grow back anyway. It’s oretty horrible though in many ways and some days I do get very dizzy standing up and it certainly can affect your mood 
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    • Posted

      I had my surgery in 2011.  Immediately afterwords my debilitating headaches vanished. I had the tumor for 30 years without knowing I had a tumor or acromegaly. I’d had 3 carpal tunnels, 2 discs in my neck fused, sleep apnea and not to mention my hands and feet growing as well as my forehead, jaw (causing teeth to spread apart) and nose spreading. The growth of your bones can’t be reversed. I am luckier than a lot of people in that I’m much better off today; no more sleep apnea or headaches. There is a group on Facebook called Acromegaly Support. You might be able to find support and answers there because there are thousands of us all over the world and you might even be able to find someone near where you live. It’s a closed group but you can request to join by telling your story. I wish you the best.
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  • Posted

    I've had a 30mm macroadenoma out. The neurosurgeon told me beforehand that (a) it is not a major op nowadays, but it is not trivial - 1 in 500 people don't wake up and (b) it will grow back so the surgery will have to be repeated every five years or so and/or I will have to be given radiation which will knock out any normal pituitary function that otherwise remains. I did have the op, was a few days in hospital to recover and have been normal since then. But I have to have an MRI every 18 months to check how quickly it is coming back.  In other ways I've been very lucky [apart from the years of trying to get a diagnosis] because my tumour is non-functioning, so I can't claim to really understand how you feel.  I have no idea whether a prolactinoma excision is a permanent or temporary solution - you should ask.

    Even so, I advise you try very hard with your endo to get the dosage of cabergoline right. Neurosurgery is not the soft option even if you could persuade the NHS [or your insurance company?] to accept it as medically necessary or even advisable on the balance of risk/reward.

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  • Posted

    Hi, I have been given Quinagolide instead of Cabergoline second time round. It is a daily tablet and I was told it could be better tolerated. Is this an option for you? I live in the UK and I'm not sure if it's available elsewhere?

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