It's in the fridge....
"...test your tumour and see" Test my tumour.. you mean the bit they took out? Wow... I didn't actually think I would still have a piece of me languishing in the fridge or freezer of the giant body store of the uk. How exciting! Now I should know because I was a research nurse, but it still surprised me!
Why? Well I mentioned to you last time that I was being tested again. I changed consultant and the new one wanted to know why I had Morris in the first place. Being so young and it being so big. Apparently anyone under 30 diagnosed with an acoustic neuroma is protocolled to be tested for NF2 (Neurofibromatosis 2) in the UK. (not sure about elsewhere) It's a rare disease where you are predisposed to growing schwannomas, and since you are young and have one already in the brain they want to make sure you don't have any others. I was missed... I'm now 36, but he wanted me to be checked anyway. It involved scans of the spine, checking your eyes and a genetic blood test to look for cells of NF2.
Well.. this past week or so after another round of tests we decided that I most likely don't have it, which is great. It may be that Morris has a few random cells of NF2 in him but isolated, so they are just checking him to tick all the boxes.
This has all been happening alongside the last set of scans to see what Morris is up to. He has been growing on and off for 3 years now, and no one can ever decide what to do! It's been frustrating. However, new doc is happy we have room to grow, so after another scan that looked similar we are waiting for 2 years. So finally 2 years out of the MRI (maybe I can get my nose stud back in again!!)
What a journey. I've been waiting for a decision on radiotherapy for so long. It's actually nice to have a little break. Morris will do what he wants and I can face that then.
So the hearing therapy... I said I'd tell you about it. This was a new on on me. Talking about how my ears make me feel! haha. No he was great.
He wanted to know how I manage the tinnitus, how I get on with being deaf. It was actually really good to talk about it. I realised that it was upsetting me. This deafness thing. Not being able to hear in noisy environments has meant I have backed off from so much. My tinnitus is always the loudest thing and I've just accepted it, but it's so draining.
He was surprised that I hadn't ever been given help for the tinnitus. He showed me an app " ReSound Tinnitus Relief" It's a masker app, but he says that's misleading because we don't want to mask tinnitus for relief, but only distract it.Give it something else to listen to. You do this by creating a sound that is the polar opposite of your tinnitus so that your ear strains to hear it and is distracted. Then you can play it when you sleep or when you're stressed and it might just help.
So how about we give it a go? I'm going to. Like a review!
I have a worksheet too, that I will make able for you to see but you have to do your homework first! ;)
Let's make hearing easier!