Share Your Brain Tumor type & Years since Diagnosis

@rbygonzales1205 I’m sonsorry-i have been reading a lot about glioblastoma since April. I can suggest this book Navigating Glioblastoma and High Grade Glioma by Dr. Thomas Gruber

Also Glioblastoma - a guide for patients and loved ones by Gideon Burrows

Has anyone heard of an DNET brain tumor? My son was diagnosed about 1 year ago after he had a seizure. He has failed several meds and waiting for next steps from our local neurologist. His WADA test was inconclusive.

@jeanneoc

Praying for a good prognosis

@maxamom, you must be so worried for your son. May I ask how old he is? Have you and your family considered getting a second opinion at a pediatric center of excellence, like Mayo Clinic Children's?

Hello All,
During the summer of 2016, I noticed a blurry spot in my vision from my right eye. I only noticed it when I was driving, so I thought it was a smudge or scratch on my sunglasses. After a month or so, I noticed it inside while watching TV. I went to the eye doctor, thinking I would need glasses. After all the tests she had, she couldn't find an issue with my eyes. She ordered an MRI. She called me later the same day of my MRI to tell me I needed to go see a neurosurgeon. The neurosurgeon showed me my MRI and there is was...a tumor the size of a large avacado sitting on my optic nerve and pushing my frontal lobe backward. He explained that this was the reason for my personality changes (quick temper), loss of interest in things I used to enjoy, and of course, the vision. Within a month I was scheduled for my craniotomy. The day of the surgery, I could no longer see out of my right eye. The good news; after surgery, it was confirmed as a benign meningioma and my sight returned to normal. The bad news; my olfactory nerves were engulfed by the tumor and subsequently, removed along with it. I no longer have the ability to smell anything; candles, food, fire, noxious fumes, toxic chemicals, etc. Also, I have memory issues, mostly short-term, and I get headaches. Sometimes very bad and lasting for days. I served for over 23 years in the military and deployed to both Iraq and Afghanistan. I was exposed to burn pits during both deployments. Also, I worked with hazardous chemicals in the military. I retired in 2012, but the meningioma wasn't discovered until 2016. My neurosurgeon gave me a letter stating that in his medical opinion, this tumor started growing well within my military service, due to the slow-growing nature of meningiomas. However, my claim to have this included as a service-connected disability was denied by the VA. The VA requires more proof that this tumor had been growing while I was on active duty. I am having a VERY hard time finding a study, paper, article, or anything that I can site as evidence that this tumor was growing then. I recently found out that it is back, but so small right now that it isn't a concern. I am to continue getting annual MRIs to keep an eye on it. Has anyone come accross information on the growth rate of meningiomas? I am now without one of my original 5 senses and have no doubt it is connected to my military service.

@judyandchloe Thank you for the suggestion. Read it. Slot I already knew but some I did not. Easy tounderstand. My husband is 18 months from diagnosis of GBM.

@rjnitke Hi, I’m not the one in my family with the brain tumor. However-I have researched gliomas and glioblastoma a lot. Here is a list of best booms with much information that may help you :

Complete Guide to Glioblastoma and Gliomad. By Dr. Colt Walter

Surviving Terminal Cancer by Ben A. Williams PHD

Glioblastoma A guide fir patients and loved ones by Gideon Burrow

Navigating Glioblastoma and High Grade Glioma by Dr. Thomas Gruber

The information is extremely good, from surgery to drugs and clinical trials and much. Even if the type of tumor is yours often other types are mentioned. These can also lead you to doctors, other books and resources.
Very good luck to you-thank you very much for your sacrifices and service,

Judith

@leg1945 In another post I listed the best four books I have read recently-all extremely helpful.

@rbygonzales1205, how did the appointment go last week? What treatment is recommended for your husband? How are YOU doing?