The next step

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.

Finding out what was wrong

In November 2009, I decided enough was enough and I wanted to work out what was wrong with my ear. I went to see a G.P in regards to my blocked ear which was also causing me to hear my pulse.

The first 3 times I went to the G.P, I was told it was just blocked and to use some drops to help relieve the sensation. Not being satisfied with this, I ask for a referral to a Ear Nose Throat specialist to have a look inside my ear.

On initial inspection, nothing was out of place. The ENT specialist checked for a blockage and noticed nothing other than a small fungal infection on my ear drum. In trying to work out what was causing the pulsing in my ear, the ENT specialist held his camera on the base of my ear canal. The image was amazing, a blue lump moving up and down ever so slightly within the canal. The ENT specialist recommended that I have a CT Scan to try and identify what it was. The specialist mentioned 1 of 2 possible causes, my jugulare vein had eroded the base of the canal or it could be a glomus tumour which is quite rare and usually benign.

After a CT Scan and an MRI, it was confirmed that I had a glomus jugulare tumour. While these usually are benign, they are highly invasive and occur in an area called the jugular foramen.The invasive component effects the mastoid cells within the ear as this is the path of least resistance through the ear - thus coming into the ear canal and causing the pulsing in my ear. The jugular foramen is also where the jugular vein and several important nerves exit the skull.

After finding out that it in fact was a glomus jugulare tumour, my ENT specialist referred me onto another as he didn't have experience in treating these.

Once I returned home, I did what most people these days would do.. I started googling! Sadly I didn't find a lot of information specifically relating to people who have been through this and how they felt. There are some good medical sites which contain information regarding the tumours.

At this stage, I didn't feel affected by this news. I was more interested in finding out about it, the different options to treat it and how to press forward.

It was a few more months before I could see Dr (_X_)

Why am I doing this?

When I was told I had a glomus jugulare tumour, I scoured the Internet to hear about peoples experience with these rare tumours and found out there really isn't much information out there. I've decided to try and document my thoughts, feelings and the way I got to the recovery bed.

I'll try and add some MRI pictures and other useful information (Doctors, hospitals etc) as I work on this.