Dementia from Whole Brain Radiation?

I had my radiation 18 years ago for GBM in the right temporal lobe. I had 6 weeks of  focused radiation and then stereotactic radiosurgery.  Two years later the tumor began to grow again around an area of necrosis that had formed at the original site.  That was removed surgically.  I have not done any chemo yet.   I am not the same person I was before.  Some days I look like I had a stroke my face is drawn and my left side is very weak.  Other days I can drive, play golf, shop and take care of whatever I need to.  Other days I am like a toddler.  my husband of 35 years never knows what to expect.   Fatigue is a major problem and my  short term memory is horrible.   It is very hard to learn new things but if I new it before I still know it now.  I was 38 when diagnosed and will soon be 57.  My Dr.s  say it will probably get worse with age but the time I made the decision to do radiation I only wanted to live to see  my youngest graduate HS. He is now a college football coach.  I have seen all my kids married and have enjoyed 8 grandchildren and now 2 great grandchildren.  At one point in 1995 just days before my youngest graduated we were told I wouldn't live through the weekend because of the necrosis  and tumor recurrence.  I have no regrets about any treatment decisions we made.    I was advised in 1995 to go home and go peacefully.  i opted for the second surgery that left me blind and so totally disoriented my whole family regretted letting  me do the surgery.  My vision returned except for some left side peripherial damage  and I am alot  slower than I was but I am here  I can love and be loved and am so thankful for everyday.  I learned from a good friend who was also ill there are no "bad" days anymore  but some days are "bed" days.  Try not to second guess  treatment decisions  try to rejoice and enjoy the good that still exists.

Hello to all of you.  Just joined when doing a search about this condition.  My husband had a medulloblastoma 23 years  ago.  They cured him with WBR.  Today he is in a care home diagnosed with dementia.  It started about 3 years ago and took a huge dive this May.  He knows who I am and then talks about me in the third person during the same conversation.  I have been mourning the man I love for the last 10 years due to his personality changes, weakness and chronic pain from avascular necrosis of his hips and shoulders.  That, they think, was caused by the steroids used during his treatment all those years ago.  So now I am working though the guilt I feel for taking him out of his own home.  I know it was right but it still is hard. 

Wow, this discussion started in 2008.  My husband was dx 12-08 and seems to be suffering from Alzheimer's.  I am reading a book called Still Alice and it is about Alzheimer's.  Alot of things in the book remind me of what my husband does.  The other day he thought I was in my pj top in a resturant and asked if I needed his shirt to put over mine.  I looked at him and didn't know what he was talking about.  He said he was just kidding.  I can't tell if he is kidding by the tone or the look on his face.  I don't think he was kidding.  I feel like I am going crazy.  He is slower at doing things.  He can't see.  We are on our 5th pair of glasses.  But my husband still goes to work each day.  Amazing and a blessing.  We do still laugh, just not as much.  Life seems sad and cruel alot of the times and is going to get worse for both of us before it gets better.  I pray to God that he has mercy on us and helps us through this horrible nightmare.  Two years and nine months is a long nightmare and it is not even over yet............... Love, Tina.

This is all so painful.  My mom had GBM dx in 8/08, then meningitis, brain abscess, hydrocephalus, and finally -- the straw that broke the camels back, after 2 years of steady improvement, a stroke and MRI surprise: radiaiton necrosis.  We blew it off for 8 months because she seemed fine, until one month when she started sleeping all the time  (it seemed to come on over a week or two) and complaining she couldn't keep herself awake.  Hi-dose dex woke her up and got her moving, but then we switched to avastin because the hi-dose dex stopped helping after a while.  Threee sessions of Avastin just opened up a door to a bigger nightmare.  More infections, shunt failure, more infections, multiple shunt revisions...and finally, after a 10 month cycle of going in/out of hospitals, we are back, full-circle, to her being asleep 20+ hours a day and still bedridden.  Her NO still says she appears to be in remission, but what can you do with the person you love when all they do is eat or sleep?  Love them as much as you can, I guess.  Let them know you love them.  Try to accept things and not to tear yourself apart remembering who they use to be.  She can barely talk, but she is still "hanging in there."  No one on the outside (friends/colleagues) can possibly comprehend how horrible this is -- only all of you do.  I like the person who mentions that there are no good and bad days anymore, just good days and "bed" days.  I pray that everyone here finds peace, good memories, and laughter again -- and that we are all given hope and healing, and that our children and grandchildren will never have to know this horrible disease or any of its side effects.  If I knew radiation could do this, we never would have taken this route. 

Wow. I'm reading all these posts and it's beginning to sink in. This is what's happening to my husband.

He had Primary CNS Lymphoma back in 1998. They told us he would die anywhere from 6 months to 4 years later. They wanted to buy as much time as possible and hit the cancer with brain-batheing chemo (with an Omaya reservoir so the chemo would literally bathe his brain) and full brain radiation 5 days a week for 6 weeks. After 6 months of chemo and the 6 weeks of radiation, he was sent home to recuperate. For a year, he slowly recuperated.

He's a scientist... a brainiac... a PhD in optical engineering involved with managing space missions. The smartest man I ever met. It was SO awful that the cancer hit his most precious possession: his brain! He was 45 and we had 4 young children. 

But he is my MIRACLE! HE LIVED! I am ... we are ... so thankful.

And now, 13 years later, we are beginning to experience what I'm reading here. It began 6 months ago, when he would tire easily, and began to "tilt" to one side. He had no idea he was doing it. When we pointed it out to him, he could sometimes stand up straight again. We called it "listing to port!" 

A couple of months ago he starting listing to port all the time. Now he's aware when it's happening. He can't control it. He shuffles his feet rather than walking. He can't lift his feet. In the past two months we've gone from shuffling, to using a cane, to needing a walker, to needing a wheelchair. We're shocked at the rapid decline! He's begun to forget things - like really important things - and the memory is just... GONE. Not there. He's getting confused. Like he can't keep days straight, and the things we need to do. He's begun to have seizures. 

What do we do? How do we cope? Can I take CLASSES in this? Are there books to read? What in God's name does the future hold? This isn't going to get better, is it? 

possible help - (personally use it every day. Inexpensive & easy to take) 

http://www.youtube.com/watch?v=iScs0uzQZFk

http://www.youtube.com/watch?v=mMw3d3ohx_s&feature=relat

There's a good possibility your husband can recover, at least partially. The link between wheat and neurodegenerative disease has been studied so thoroughly now that it's plastered all over Wikipedia. Yet the vested interests in clinical medicine still seem not to have gotten the news.

http://en.wikipedia.org/wiki/Gluten-sensitive_idiopathic_neu

This is not rocket science. Stop feeding your husband grassy grains (wheat, barley, rye and oats). In addition, stop feeding him anything which tastes sweet, including fruit.

http://www.ncbi.nlm.nih.gov/pubmed/12826451

Fructose feeds microorganisms in the small intestine. The immune system sets up an autoimmune response which recognizes the microorganisms by their proteins. Wheat gluten mimics these proteins, and invokes the same autoimmune response.

Yes, replacing these food sources with beneficial fats can help. But first get rid of these food sources.

On Dec 04, 2011 8:00 AM JeanneG4 wrote:

Wow. I'm reading all these posts and it's beginning to sink in. This is what's happening to my husband.

He had Primary CNS Lymphoma back in 1998. They told us he would die anywhere from 6 months to 4 years later. They wanted to buy as much time as possible and hit the cancer with brain-batheing chemo (with an Omaya reservoir so the chemo would literally bathe his brain) and full brain radiation 5 days a week for 6 weeks. After 6 months of chemo and the 6 weeks of radiation, he was sent home to recuperate. For a year, he slowly recuperated.

He's a scientist... a brainiac... a PhD in optical engineering involved with managing space missions. The smartest man I ever met. It was SO awful that the cancer hit his most precious possession: his brain! He was 45 and we had 4 young children. 

But he is my MIRACLE! HE LIVED! I am ... we are ... so thankful.

And now, 13 years later, we are beginning to experience what I'm reading here. It began 6 months ago, when he would tire easily, and began to "tilt" to one side. He had no idea he was doing it. When we pointed it out to him, he could sometimes stand up straight again. We called it "listing to port!" 

A couple of months ago he starting listing to port all the time. Now he's aware when it's happening. He can't control it. He shuffles his feet rather than walking. He can't lift his feet. In the past two months we've gone from shuffling, to using a cane, to needing a walker, to needing a wheelchair. We're shocked at the rapid decline! He's begun to forget things - like really important things - and the memory is just... GONE. Not there. He's getting confused. Like he can't keep days straight, and the things we need to do. He's begun to have seizures. 

What do we do? How do we cope? Can I take CLASSES in this? Are there books to read? What in God's name does the future hold? This isn't going to get better, is it? 

My father is in his 40s and suffering the same symptoms written in these posts. I am particularly attracted to your because, same as your husband, he tilts to the right when he attempts to walk. He has gone down hill fast - just when we thought things were getting better. He was diagnosed with the brain tumor July 2011 and has been through radiation and chemo treatments. We just got news 2 months ago that his MRI results look great! They call the tumor "stabilized" and are giving him a break from the chemo. He is still doing avaston treatments for maintenance purposes. Since his last chemo treatment 6 weeks ago he has gone down hill physically and mentally. This is very tough on the whole family as we thought things we "better". In the past 2 weeks he has been to the hospital 2x for falling and hitting, of all things, his head. We now have him in a wheel chair just to get around the house. He cannot be left alone for even 5 min - its almost is if he forgets he cannot do things on his own. He tries to get up and falls. I was hoping this all was a side effect and would soon pass but the more I read the less hope I have of him "coming out" of this. He has trouble with short term memory. Forgets days, forgets doc appt he was at with my mother the same day - and has even forgot who my mom, his wife of 23 yrs, is briefly twice. He's so lost and confused it breaks my heart. I am curious how your husband is doing and if there has been any improvement at all or if this is more of a permant thing. The doctors are not giving us any direction, almost like they are avoiding it! I just want the truth. We have an appointment in 3 days to get results of his latest MRI, not sure if this kind of stuff shows up on these tests?

I was told by our NO at one of the best research facilities in the world that once the dementia sets in, it does not come back because as the radiaiton burns the good tissue of the brain, it cannot regenerate.

My wife started going downhill on January the 6th (our last dinner together, our las conversation together was on January 4th for all practical purposes, I count as her death date)

If you go back into the archives you can read her story and it may be in this thread although hers was not whole brain radiaiton.

it was explained to me as approximately 3cm beyond the size of the tumor..

For awhile I will say that I too had to wheel her around the house in a wheelchair....but luckily her leg went bad, her right leg..it just stopped working around November 2011.

We got her an AFO for that right leg and that allowed her (along with a 4-pronged cane) to sort of walk around the house, this once highly active and vvacious lady now looking like a walking zombie or sort of like Boris Karloff in the mummy.

At this point, she is not my wife, but this living, breathing, eating and pooping machine whose diapers (pull ups) I have to change 8 or 10 times or more a day.

Sometimes ,i look on this site and someone writes in and says they have GBM and their writings on the site are in perfect paragraphs and spelling and they are still on this earth, you can tell in the structure and content of their writing.

My wife on the other hand was given a machine called "lindgraphica" which allows someone to communicate by looking at pictures...

When my wife uses it, she'll just start hitting all the pictures, not understanding or answering any question you may give her..just hit the butons and giggle and it reminds me of Barney fife giving the town drunk a driving test on the Andy Griffith Show...

I can recall the concern that the great white lab coated geniuses gave my wife when her mind was there like those on this site with the ability to write a paragraph as they tell their GBM story, the sky was the limit, they all knew her name and the alarm bells sounded in it's urgency to treat her...

After the cognition problems came, the great white lab coated geniuses, asked ME if I thought I could find her some therapy (sure doc, I'm a runner, I could find her some therapy!!) that's when I knew the lines had been cut and we were on our own....

Once the cognizence leaves....it's over....

Big in the news today was a story about two men who helped people die, like Dr. Kevorkian did..People were outraged at what they did, but I sure don't see it that way...Dr. K and they were HEROES..

I don't have the moral courage to seek that help for my wife, I keep taking her to her treatments, changing her diapers and watching her traverse the room like a ghost with a black eye (from a fall two days ago)

Why the avastin treatments? Why the CCNU? I just can't do the right thing. 

Please don't be so hard on yourself. There is no guide book To this. What's worse is that docs don't understand so much About the brain and this disease. What's even scarrier is that So many people on this site describe what sounds like normal pressure Or low pressure hydrocephalus: can't walk(imbalance/weakness), Incontinence, and dementia. Only 2 docs in the country can diagnose It and treat it: Melvin Bergsneider, MD, at UCLA, and Dr. Williams At Hopkins...or I think he moved to another academic program. I tried to get my mom help with Neurosurgeons here (UMiami), And Mayo Clinic Jacksonville, but no one knew what I was talking About. I even printed out dr. Bergsneiders papers, but to no avail. If anyone is interested, look up Bergsneiders papers on Pubmed. Who gets NPH? People who have brains that have been subjected To tumor, infection, bleeding, or radiation.