I have some info which may be helpful

January 19, 2011 at 9:20 am

Cathy, Sorry to hear the troubles Natalie is having, maybe I can be of help. I have CIDP which is the chronic form of the acute form GBS. Several years ago I also had a brain tumor on my optic nerve. It was called a menigeoma. I was on the table for 5-1/2 hours on Wednesday so surgeons could place a PVA capsule in the local blood vessel/s to reduce bleeding and so the operating surgeons could observe the tumor under a fluoroscope. On Thursday I was on the table for 10-1/2 hours. A “tunnel” was made through my sinuses and the entire tumor was removed successfully by 2 surgeons using scalpels – which I still find amazing. Next week I get my yearly MRI to make sure the tumor has not returned.

Cathy, the medical folks can do miracles today. The Gamma knife has given many patients a second chance. However, there exists yet another device called a linear accelerator or LINAC. At this writing there are only 5 in the USA that I am aware of. One is currently being installed in North Carolina. Here is a blurb taken from the Jefferson Hospital LINAC website :

“Linear accelerator (LINAC) machines have been proven to be a
safe, effective treatment option for patients with inoperable brain
tumors in dangerous locations, such as the optic nerve and brain stem”

You may want to do research on this to find the nearest one to you. This may be helpful if Natalie’s tumor returns (and hopefully it doesn’t). It may also be helpful for you to know, I shared a lab with 5 others for a total of 6 and 3 of us developed brain tumors (as did several others in the same building). These numbers give me a different perspective and viewpoints to draw on. I was speaking to an ex co-worker who told me he his tumor had started to grow again and he is going to Jefferson (Phila. PA) and getting LINAC treatments. He choose this option over the gamma knife for good reasons. I too may one day need to utilize the LINAC, hopefully not.

I pray, I gave you another option and did not scare you. With the exception of one person most of my co-workers and myself have enjoyed productive lives after the tumor removal. I looked at it as just one more speed bump of life.