Angelia's 2nd Brain Surgery Expenses

I was born with a disease call NEUROFIBROMATOSIS(NF) that we were unaware of. I did complain of my head hurting growing up but we didn't think it was anything major.  We found out in 2012 at 31 yrs of age that I have NF2.   According to the National Institute of Health they say I was born with it. 3 months after being diagnosed I had to have my first brain surgery to remove 3 off the right side.

There is three classifications of NF.  NF1, NF2 and Schwannomatosis

Neurofibromatosis type 2 (NF2) is much less common than NF1. NF2 affects about 1 in 33,000 people worldwide. The disorder is characterized by the development of benign tumors, called vestibular schwannomas.  Tumors can also grow anywhere in the body where there are nerves. There is NO CURE! NF2 results from changes (mutations) in the NF2 gene. The NF2 gene regulates the production of a protein that functions as tumor suppressors. In more than half of individuals with NF2 is caused by a spontaneous(new) mutation of the gene. In others NF2 is inherited. A person with NF2 has a 50% chance of passing it onto their child(ren)

If hearing is lost during this surgery, but the auditory nerve is maintained, the surgical placement of a cochlear implant (a device placed in the inner ear, or cochlea, that processes electronic signals from sound waves to the auditory nerve) may be an option to improve hearing.  As tumors grow larger, it becomes harder to surgically preserve hearing and the auditory nerve.  The development of the penetrating auditory brain stem implant (a device that stimulates the hearing portions of the brain) can restore some hearing in individuals who have completely lost hearing and do not have an auditory nerve present.  Surgery for other tumors associated with NF2 is aimed at controlling or relieving symptoms.  Surgery also can correct cataracts and retinal abnormalities.

NF2 is a serious disease that can quickly be life-threatening. The pressure of lower cranial nerves schwannomas is a poor prognostic factor, and radiosurgery should be considered for their treatment as surgical removal often worsens the swallowing disturbance.

There is only 4 options a person with NF2 has.

1) Radiation
2) Avastin (will not kill them but stop/slow the growth of the tumor) {it’s also extremely expensive}
3) Surgery (sometimes not always able to have surgery depending on location and size)
4) Monitor them by getting constant MRIs. 


I get MRIs every 5 to 6 months to monitor my brain for any growth of current ones and to see if any new ones have developed. I get an MRI of my spine every 2 years unless I begin to have issues or symptoms. 

Due to Neurofibromatosis being a rare disease I will be having this surgery done by the same Surgeon who did my first.  This surgery involves my brain stem. 

Your donation will be going towards expenses during and after my surgery. 

I GREATLY APPRECIATE YOU! 

I have also decided to seek ThirtyOne as a way to also earn extra income. If you are interested in purchasing some ThirtyOne items please find my shopping link at:

https://www.mythirtyone.com/us/en/11148610

I thank you very much from the bottom of my heart.