MRI

So I have to have a MRI on Tuesday. Its basically to see how much and where the tumor has grown. Im not looking forward to this. Im used to them. But I still hate them . A LOT! Its going to be a long one 4 maybe 5 hours. I can never sleep in them either so I just get to lay in there and listen to the pounding noise the machine makes. Yuck.

So for those of you who don't know and are wondering why exactly Im having this done, I have whats called Neurofibromatosis Type 1 (I can't explain it very well so I took this description from the MayoClinics website "Neurofibromatosis is a genetic disorder that disrupts cell growth in your nervous system, causing tumors to form on nerve tissue. These tumors can occur anywhere in the nervous system, including in your brain, spinal cord, and large and small nerves. Neurofibromatosis is typically diagnosed in childhood or early adulthood. The tumors are usually noncancerous (benign) and the disorder is usually mild. But effects of neurofibromatosis can range from hearing loss and learning impairment to cardiovascular complications and, in a few cases, cancer.")
Its something I was born with this. But I didn't start developing tumors until I was around 6. I used to get these horrible migraines that I remember I'd be fine one minute and passed out the next because they'd hit so fast! They did brain scans but never found anything. I used to always get ear infections so I had to have tubes put in my ears, thats how they found the tumor.

There's never been anything they can do for my tumors. In a lot of cases they can try chemo and other treatments but in my case they'd just grow. If they removed them they'd grow back ten times the size, or since the tumors grow off nerve endings if they cut too much and I'd be paralyzed or seizure on the operating table. I also can't have any surgeries ever since the tumor is completely wrapped around my airway pushing it to the right. It is also in my jaw, chin, tongue, cranial nerves, voice box, right lung, choroted arteries, wrapped around my spinal chord, in my neck, my rib cage and the list goes on!

I haven't had an MRI in a few years so we are going to see where the tumor has expanded to.

I was a lot sicker when I was younger than I was now, at one point I was hooked up to all sorts of machines,((I had a Gtube in my stomach, basically a feeding tube, a central line I was hooked up to constantly) in a wheel chair and was given 6 months to live. Well I proved them. Still do.