I managed to see my new ENT specialist in early Feburary 2010. I had a quick discussion with him in regards to how this tumour affects me and the possible methods of treatment. Being 25, he mentioned that it would be a good idea for me to chat to a radiotherapist as an alternative to surgery as there are risks of facial paralysis and scarring involved. At this stage, my mind was set on having the tumour removed from my head, but i went along to see the radiotherapist anyway.
Once I had a chat about the pros and cons of radio therapy, I was still leaning towards total removal of the tumour. Radio therapy would stop the tumour growing and possibly reduce the size of the tumour but the risks associated didn't sit well with me. With the decision made, I was asked to do a urine collection to check for increased dopamine / adreniline which can be associated with these tumours. The issue that arises with either of these is that when the tumour is being removed, it can cause it to send too much of either chemical and cause complications with the heart.
Lucky for me this was checked.
It was found that my dopamine levels were higher than they should be and I had to begin some medicine which blocked the body recieving these drugs. First I started the alpha blocker.. this made me feel a tired and like I had the flu. It was called Phenoxybenzamine. The beta blocker medication I had to start prior to surgery was called metoprolol. This made me feel a bit depressed, tired and generally crap - so if you're on these then that's why!
Through out these 2 months I had a MIBG scan, multiple MIR's and CT Scans. This plus the medication starts to add up over time, so it was important to keep an eye on my bank balance.
I didn't feel too worried or scared at this stage, I think I let other people do the worrying whilst I prepared for my surgery. I found that having a strong group of friends and family who will both talk about it and not talk about it to be very important to keeping spirits high. For me, it was easier as I had the unfortunate experience of hearing other people being told that they couldn't be helped. This made me realise that I WAS lucky.
These are rare, slow-growing, very vascular tumours of a group called paragangliomas. They are derived from glomera jugulare (or glomus bodies) which themselves are derived from neural tissue and arise within the jugular foramen of the temporal bone -Rare tumour (the annual incidence is around 1 in 1.3 million people per year) -They tend to present between 40 and 70 years of age (range: 6 months to 88 years) -There is a female preponderance of between 3 and 6:
Friday, April 30, 2010
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Apparently my first attempt at posting this didn't go through. I really appreciate you making this blog. I'm a 31 year old female, not the norm that are diagnosed with this. I especially appreciate you writing how you felt. It's comforting to know that I'm not alone in grappling with these emotions.
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