Sight and smell loss after pituitary gland tumour removed

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I had a benign pituitary gland tumour removed last year May (2019) and I still have loss of sight in my left eye and total loss of smell. Any recommendations on medical or natural treatments to regain some use??

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  • Posted

    Have they said why your eye has lost its sight? In my case the sight returned quickly once the tumour was removed although my optic nerve was slightly damaged. If your optic nerve was also damaged, is the sight able to return? It took many months for my smell to return to normal, I had quite a few ENT appointments to check out my nose and clear crusting and check for infection, did you have the same? I'd say my sense of smell is about 80% of what it was.

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    • Posted

      @esc4p3 when you say you had ENT's clear crusting, what did they have to do? I had my surgery in 1996 and for 24 years I have crusting every single day that I clear out myself. Only times I don't have it is during a head cold or allergies causing a runny nose. I'm 50 now and the thought of having to still clear my nose like this constantly when I'm 80 and shaky scares me.

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  • Posted

    Just want to sympathize with you. I had a pituitary tumor removed in 1996. I remember having a loss of smell and taste for quite some time. I'm sure over a year. I even remember having numbness under my upper lip, and side of my nose on the side they went through. Can I ask how your healing is inside your nose? The scarred area inside my nose that healed always has like a scab over it. And if I don't clean it out regularly, it just feels bigger to where I can hear myself breathe or it whistles when I breathe and I can feel it inside like dry boogers. Sorry to be so graphic. I just wonder if other people that have had the same procedure ever endure this or if it is just me.

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  • Posted

    For me the crusting was scarring and blood clots that were cleared away up my nose in the first few months. The ENT consultant went up my nose with a camera and cleared it away, it was unpleasant at the time but over a 4-6 month period it cleared up. I still have a more snotty left nostril than I used to, but it is manageable. My surgery was in 2013. I don't think you should still have this issue since 1996!

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    • Posted

      Exactly. Thats the thing I don't understand. After my surgery, I only had one follow up post surgery appt with the neurologist and he cleared me. But never had me follow up with an ENT or any doctor after that...so this has been my nightmare on the daily most of my life.

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  • Posted

    If you had vision problems before surgery, it is probable that the tumour adhered to one of your optic nerves, giving the surgeon an extremely difficult task of separating it without damage. If so, you should have been informed of the outcome. In my case, I was warned before surgery of that risk, but the choice was between definitely going blind in both eyes or possibly losing sight in one eye, so a no-brainer really. I was lucky, the bread fell jammy side up. Yours might still come back but ...

    Your smelling nerves are more likely to recuperate but your brain could get bored in the meantime and divert the neurones to something more useful. So (writing as a total amateur!) I think that you need to push it as hard as you can in the meantime by sniffing the most revolting smells you can find (not something acrid like bleach that will cause damage) something like rotten eggs or durrian fruit. Something that will trigger the survival instinct.

    There are a load of quack remedies out there that won't do you any good and some will cause harm. But if you really want to try something, anything, then acupuncture just might help. There is no objective reason why it should but it seems sometimes to awaken the placebo response, which does work when it happens.

    Have you contacted the Pituitary Foundation?

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