Aggie06
I ain't the one to blame.
Hang in there man. Prayers sent for your daughter.
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Daughter has a brain tumor. (Not cancer)
- Thread starter Yota Up
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Beat95yj
Rolling 24/7
Putting a bookmark in this so I remember to come back. My ex-wife had a non-cancerous brain tumor and I’m very familiar with treatment and recovery. Sounds similar to what your daughter has. If I don’t come back, shoot me a message.
Beat95yj
Rolling 24/7
I am back. Sorry about that, we actually have a no phones on the table during dinner rule. How old-fashioned.
My ex-wife had a tumor behind her left ear, the size of a baseball. It was discovered because she had balancing issues and would just fall down walking down the hallways at work. Her primary doctor went on vacation and the back up. Dr agreed that she probably needed an MRI even though they had been chasing this for an extended period. That MRI found the tumor.
Three days after the MRI, we were called directly into the ER at Kaiser Sunset in Los Angeles. More tests were taken, and because they could not determine how fast it was, they suggested we remove it immediately. Kaiser wanted to send us to their neurosurgery group in San Diego but we decided to let the Kaiser Sunset neurosurgeon take a shot at. She had a 19 hour surgery, and they only were able to remove half of the tumor. She had so much bleeding that they needed to end the surgery. Apparently the blood vessels on the outside of the tumor needed to be cauterized quickly, so they could remove the rest of the tumor, and that was not done. After the surgery, she had difficulty walking for a few days and was on bedrest for 4 or 5 days.
As a result of not getting the whole thing out, they had to put a drain in her head that drains cerebral fluid down into your stomach. We were told at the time it would be temporary.
Two months later, we went to San Diego at the neurosurgery clinic there. The second surgery took 2 1/2 hours and she was awake and alert as they pushed her to her room at about hour three. Her symptoms were now gone. We went out to dinner the night after her surgery.
I did learn that one of the most important things if a woman has blood in her hair is finding the right hairstylist to take care of that. Apparently, it can be very traumatic for both parties.
As I said, the tumor was non-cancerous and it was not the one that starts with a G. I cannot remember what it is right now.
It has been about 14 years and the biggest drawbacks have been with the drain. It has to be set a couple times a year. It is set by a magnet. Any magnetic field can alter its adjustment and require you to go in to get it fixed. It does cause headaches when it is misadjusted. Also, at the time we were thinking of children, and a couple of doctors did not recommend it because apparently somehow the fetus can get tangled in the drain hose. It always seemed like the uterus was lower than that to me, but I am no doctor.
Also, there is an MRI if her head taken every year at first, I think she is at 5 years now. There is a huge void where the tumor used to be, and sometimes cerebral fluid will slash around in there and cause discomfort. If the brain material is soft enough, it can actually start to reclaim the void, but at 40 years old, it was not the case for my ex.
She is limited on what she can do now. No skydiving, bowling or softball (not sure why the doctor said bowling but she was in a league) are anything else that could cause a head injury.
She never had children. She and her new husband have a trailer and just travel the country for 6 to 8 months out of the year. She is living life.
My ex-wife had a tumor behind her left ear, the size of a baseball. It was discovered because she had balancing issues and would just fall down walking down the hallways at work. Her primary doctor went on vacation and the back up. Dr agreed that she probably needed an MRI even though they had been chasing this for an extended period. That MRI found the tumor.
Three days after the MRI, we were called directly into the ER at Kaiser Sunset in Los Angeles. More tests were taken, and because they could not determine how fast it was, they suggested we remove it immediately. Kaiser wanted to send us to their neurosurgery group in San Diego but we decided to let the Kaiser Sunset neurosurgeon take a shot at. She had a 19 hour surgery, and they only were able to remove half of the tumor. She had so much bleeding that they needed to end the surgery. Apparently the blood vessels on the outside of the tumor needed to be cauterized quickly, so they could remove the rest of the tumor, and that was not done. After the surgery, she had difficulty walking for a few days and was on bedrest for 4 or 5 days.
As a result of not getting the whole thing out, they had to put a drain in her head that drains cerebral fluid down into your stomach. We were told at the time it would be temporary.
Two months later, we went to San Diego at the neurosurgery clinic there. The second surgery took 2 1/2 hours and she was awake and alert as they pushed her to her room at about hour three. Her symptoms were now gone. We went out to dinner the night after her surgery.
I did learn that one of the most important things if a woman has blood in her hair is finding the right hairstylist to take care of that. Apparently, it can be very traumatic for both parties.
As I said, the tumor was non-cancerous and it was not the one that starts with a G. I cannot remember what it is right now.
It has been about 14 years and the biggest drawbacks have been with the drain. It has to be set a couple times a year. It is set by a magnet. Any magnetic field can alter its adjustment and require you to go in to get it fixed. It does cause headaches when it is misadjusted. Also, at the time we were thinking of children, and a couple of doctors did not recommend it because apparently somehow the fetus can get tangled in the drain hose. It always seemed like the uterus was lower than that to me, but I am no doctor.
Also, there is an MRI if her head taken every year at first, I think she is at 5 years now. There is a huge void where the tumor used to be, and sometimes cerebral fluid will slash around in there and cause discomfort. If the brain material is soft enough, it can actually start to reclaim the void, but at 40 years old, it was not the case for my ex.
She is limited on what she can do now. No skydiving, bowling or softball (not sure why the doctor said bowling but she was in a league) are anything else that could cause a head injury.
She never had children. She and her new husband have a trailer and just travel the country for 6 to 8 months out of the year. She is living life.
JohnnyJ
Low Range Drifter
No advice, but best wishes for your daughter. Hope they can take care of it.
NakedJeep
Active member
My boy has a non-cancerous (we hope) mass in his noggin. Pressure built up and caused migraines. They drilled a hole in his head, punctured the sack around the brain, and let the liquid and pressure out. He's much better. It's amazing what they can do these days.
Fun fact. I had my noggin drilled when I was a kid, too. To relive pressure while in a coma from a head trauma. Dad and son each have real holes in their heads.
"Once air hits your brain, you're never the same"
Prayers
Fun fact. I had my noggin drilled when I was a kid, too. To relive pressure while in a coma from a head trauma. Dad and son each have real holes in their heads.
"Once air hits your brain, you're never the same"
Prayers
Weasel
Red Skull Member
Yeah best of luck, if that's a thing to say. Sorry suck with words.
But seems like it's pretty routine to cut a hole in the skull an remove many of these tumors, hopefully that is the same for your girl.
But seems like it's pretty routine to cut a hole in the skull an remove many of these tumors, hopefully that is the same for your girl.
roundhouse
Red Skull Member
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Friend of mine had a tumor .
He was in his 50s
Started having bad headaches and stuff .
Blurred vision etc
They found a non cancer tumor and had a plan for surgery etc in a few weeks
Few days later he lost vision in one eye ,
Tumor was growing a lot faster than the docs thought and they did surgery the following day .
He had a bunch of meds etc but he was back to normal in a few weeks
Back to work , driving etc
He was in his 50s
Started having bad headaches and stuff .
Blurred vision etc
They found a non cancer tumor and had a plan for surgery etc in a few weeks
Few days later he lost vision in one eye ,
Tumor was growing a lot faster than the docs thought and they did surgery the following day .
He had a bunch of meds etc but he was back to normal in a few weeks
Back to work , driving etc
madplanter
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not that big a deal imho. My wife had one she elected for surgery to have it removed or the meds. 20+ years later never came back.
dntsdad
Central California
Not that a tumor like this on the pituitary is common, but it's also not rare by any means.
OP this is something that is fairly easily handled with meds and/or surgery.
You say her prolactin is good but can be a cause if high. Maybe it was for some reason but something changes. P5P is a vitamin D variance that controls prolactin in mild cases and a drug called cabergoline for more extreme cases. Of course, your docs are going to know this though. Prolactin levels rise for people on TRT or even anabolic steroids. Doubtful she is doing either of those. lol So maybe it was something else or maybe it wasnt prolactin at all. Who knows?
Stay off Google and finding absolute worst case scenarios. No medical case is apples to apples. You won't find anything in a case like this that is going to be Nostradamus of what your daughter will present with or have the same outcome/treatment, etc.
Dropping some prayers later when I make my nightly for her!
OP this is something that is fairly easily handled with meds and/or surgery.
You say her prolactin is good but can be a cause if high. Maybe it was for some reason but something changes. P5P is a vitamin D variance that controls prolactin in mild cases and a drug called cabergoline for more extreme cases. Of course, your docs are going to know this though. Prolactin levels rise for people on TRT or even anabolic steroids. Doubtful she is doing either of those. lol So maybe it was something else or maybe it wasnt prolactin at all. Who knows?
Stay off Google and finding absolute worst case scenarios. No medical case is apples to apples. You won't find anything in a case like this that is going to be Nostradamus of what your daughter will present with or have the same outcome/treatment, etc.
Dropping some prayers later when I make my nightly for her!
No advice, but best of luck, and a sincere hope that it ends up a minor deal. Best wishes for your kiddo.
SomeGuyFromOlympia
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dang
sad face emoji
sad face emoji
subybaja
E. Spengler
Here4memes
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I kinda tell it how it is weather you want to hear or not. But read all the way through and everything came out just fine.
My step-dad was in an accident at a paper mill where a paper machine exploded sending him like 20' up against a block wall. There were 4 deaths involved. The only thing he remembered was waking up looking at a pair of work boots in front of the machine with just legs in them (wasn't his). About a year later and he started having seizures. He described them as seeing everything like clickety black and white films. And the smell of ammonia. He had to just stop and spend 30 seconds to 2-3 minutes with the seizures when they came. He dealt with it for a while then decided to go see the doctor. Sure enough after a scan it was confirmed that he had a soft-ball sized in his frontal lobe area. Had it removed. Took months to fully heal.
The first month was very scary due to the initial swelling but the doctors knew he would come out and be all right. When a brain swells it takes over your mind. We had to sit night and day with him tied down in the bed with leather straps and bleeding arms and legs from fighting it. He spoke out of his mind. During all this he said some bad shit about all of us there being loving family. We even had preachers come in and try to snap him out with prayer and such.
Then one day possibly 2-3 weeks later (which seemed like eternity) he woke up and knew his "safe word" that him and my mom had said from the start. He passed with flying colors when they untied him except he wondered why he was so sore like he wrestled horses and barbed wire for 4 weeks.
After recovery (maybe 3-4 months guessing) He got a grant to go to college and chose to be a welder. And he turned out to be very good at it doing mostly stick aluminum welding building huge industrial chillers and ice machines. He retired just last year. It's been probably 20 years since the tumor. Nothing but memories from all of it.
He stuck with and took care of my Mom extensively when her inherited bad liver failed and she finally passed 4 years ago. They were soul mates til the end.
Last time I saw him about a year ago he got his first tattoo of a heart on top of his left chest above his heart with my mom's name in it and some words. Guess it's about time to go visit again.
My step-dad was in an accident at a paper mill where a paper machine exploded sending him like 20' up against a block wall. There were 4 deaths involved. The only thing he remembered was waking up looking at a pair of work boots in front of the machine with just legs in them (wasn't his). About a year later and he started having seizures. He described them as seeing everything like clickety black and white films. And the smell of ammonia. He had to just stop and spend 30 seconds to 2-3 minutes with the seizures when they came. He dealt with it for a while then decided to go see the doctor. Sure enough after a scan it was confirmed that he had a soft-ball sized in his frontal lobe area. Had it removed. Took months to fully heal.
The first month was very scary due to the initial swelling but the doctors knew he would come out and be all right. When a brain swells it takes over your mind. We had to sit night and day with him tied down in the bed with leather straps and bleeding arms and legs from fighting it. He spoke out of his mind. During all this he said some bad shit about all of us there being loving family. We even had preachers come in and try to snap him out with prayer and such.
Then one day possibly 2-3 weeks later (which seemed like eternity) he woke up and knew his "safe word" that him and my mom had said from the start. He passed with flying colors when they untied him except he wondered why he was so sore like he wrestled horses and barbed wire for 4 weeks.
After recovery (maybe 3-4 months guessing) He got a grant to go to college and chose to be a welder. And he turned out to be very good at it doing mostly stick aluminum welding building huge industrial chillers and ice machines. He retired just last year. It's been probably 20 years since the tumor. Nothing but memories from all of it.
He stuck with and took care of my Mom extensively when her inherited bad liver failed and she finally passed 4 years ago. They were soul mates til the end.
Last time I saw him about a year ago he got his first tattoo of a heart on top of his left chest above his heart with my mom's name in it and some words. Guess it's about time to go visit again.
Last edited:
WVcreeker
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Good buddy of mine had one a couple years ago. He is one of the rare people who has incredible book-smarts and common sense. Electrical engineer, PE, has started a couple very successful engineering businesses, built drag car chassis, cleared the land, designed and built his house/shop, only hiring out a few things like concrete and drywall. Did it all himself with help from family/friends. Not much he can’t figure out and master. About 58 yo.
We only get to see each other a few times a year. Met at a car show and I noticed he just didn’t seem normal. Real quiet, slow, not describing everything in great detail like normal. I even mentioned it to my wife later.
Couple months later he was on a 4 hr drive, that he made hundreds of times, while talking to a friend, and said he didn’t know where he was. They tracked his phone and found him in the woods on a muddy trail. Luckily he had enough wherewithal to know he was about to get stuck and just stopped, but couldn’t figure out what else to do. This was a Friday afternoon.
Scans showed a huge frontal lobe tumor. They did a surgery on Tuesday to cut off the tumors blood flow, followed by one to remove it the next day. He said he felt better immediately when he came out of anesthesia. Went home two days later and says he feels like he’s 20 again. Some issues like incontinence, and sleep apnea that he had prior were now gone. He is currently building a 1500hp Suburban for Rocky Mtn race week, Sick Week etc.
All this just to say they can do some amazing surgeries and treatments nowadays. Stuff like that is not the automatic doom and gloom scenario it used to be. Y’all stay strong. Good vibes and prayer sent you way!!
We only get to see each other a few times a year. Met at a car show and I noticed he just didn’t seem normal. Real quiet, slow, not describing everything in great detail like normal. I even mentioned it to my wife later.
Couple months later he was on a 4 hr drive, that he made hundreds of times, while talking to a friend, and said he didn’t know where he was. They tracked his phone and found him in the woods on a muddy trail. Luckily he had enough wherewithal to know he was about to get stuck and just stopped, but couldn’t figure out what else to do. This was a Friday afternoon.
Scans showed a huge frontal lobe tumor. They did a surgery on Tuesday to cut off the tumors blood flow, followed by one to remove it the next day. He said he felt better immediately when he came out of anesthesia. Went home two days later and says he feels like he’s 20 again. Some issues like incontinence, and sleep apnea that he had prior were now gone. He is currently building a 1500hp Suburban for Rocky Mtn race week, Sick Week etc.
All this just to say they can do some amazing surgeries and treatments nowadays. Stuff like that is not the automatic doom and gloom scenario it used to be. Y’all stay strong. Good vibes and prayer sent you way!!
KungFooMASTA
El Stupido
Prayers for your daughter, you and your family.
Muckin_Slusher
****
OP hasn't been back.
Hope all is well---just busy!
Should get back in here sometime for moral support from internet assholes.
Hope all is well---just busy!
Should get back in here sometime for moral support from internet assholes.
snivilous
Well-known member
Goodluck to your daughter and family.
There was a guy in high school, one year behind me who got a brain tumor. Not sure of the specifics, but I think he still has it (so it's been over a decade now) and as far as I know he lives a totally normal life. Maybe takes some drugs to keep it at bay.
My mom had breast cancer (still alive). I remember my parents telling me and they thought she had just been given a sentence to die, which pissed me off since I was going okay, what are you going to do to fix it? I know there's no way to "chill" about it, but as someone earlier said, I would try to not go insane before you visit the other doctors. Medical advances have come a long way, and there is a ton of insane and amazing technologies out there. Don't be like my parents and just jump to the conclusion that it's the end of the world, for all you know there's a lot of options out there. And don't be afraid to get second or third opinions. My dad has been through a bunch of shit in the past year after getting a flight for life after rolling his UTV, and it seems like sometimes he talks to five doctors before someone has an answer that's correct since there's a lot of different things that can have similar symptoms. Doesn't hurt to compare ideas since the human body is complicated.
As for telling your daughter, I don't know which way I lean about that. On the one hand I see the merit in letting her enjoy summer as carefree as possible. Flip side is school will be really stressful and then you somehow drop this news, that seems like a lot to contend with at once. But fuck if I know.
There was a guy in high school, one year behind me who got a brain tumor. Not sure of the specifics, but I think he still has it (so it's been over a decade now) and as far as I know he lives a totally normal life. Maybe takes some drugs to keep it at bay.
My mom had breast cancer (still alive). I remember my parents telling me and they thought she had just been given a sentence to die, which pissed me off since I was going okay, what are you going to do to fix it? I know there's no way to "chill" about it, but as someone earlier said, I would try to not go insane before you visit the other doctors. Medical advances have come a long way, and there is a ton of insane and amazing technologies out there. Don't be like my parents and just jump to the conclusion that it's the end of the world, for all you know there's a lot of options out there. And don't be afraid to get second or third opinions. My dad has been through a bunch of shit in the past year after getting a flight for life after rolling his UTV, and it seems like sometimes he talks to five doctors before someone has an answer that's correct since there's a lot of different things that can have similar symptoms. Doesn't hurt to compare ideas since the human body is complicated.
As for telling your daughter, I don't know which way I lean about that. On the one hand I see the merit in letting her enjoy summer as carefree as possible. Flip side is school will be really stressful and then you somehow drop this news, that seems like a lot to contend with at once. But fuck if I know.
My son had brain tumor that was operated on. It was right above the C1 where all the nerves come in/out and causing all manner of symptoms They weren't sure what caused it, so they weren't sure what meds would do to it, so they cut it out. He had memory and balance issues for a few years. We enrolled him in martial arts to help with balance and he was young enough, his brain re-wired pretty quick. He was in the 5th grade.
It was terrifying as a parent. I didn't sleep more than an hour at a time from diagnosis to leaving the hospital and when he was in surgery was the longest I was away from him for that 3 weeks. Now I can't even remember the type of tumor they called it. He has to get scans every couple of years to make sure it hasn't returned.
It was terrifying as a parent. I didn't sleep more than an hour at a time from diagnosis to leaving the hospital and when he was in surgery was the longest I was away from him for that 3 weeks. Now I can't even remember the type of tumor they called it. He has to get scans every couple of years to make sure it hasn't returned.
Pook
Red Skull Member
Sorry to hear this.
I have known a few people with non cancerous brain tumors that were operated on and all came out fine. Still scary though. Good thoughts headed your daughter's way.
I have known a few people with non cancerous brain tumors that were operated on and all came out fine. Still scary though. Good thoughts headed your daughter's way.
Yota Up
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Do you remember which meds? There's one that starts with gabo or something and while it's intended to drop prolactin people report it shrinks the tumor as well. So far at first glance they said it's not in a place where they can operate and remove it so hoping for the right meds to shrink it.
I know a lot of folks can live with it and all, but if she's not getting periods than my concern is her future to be able to have babies.
Yeah, sorry about that. Was out of town with family for a week, and have to head out tomorrow until the weekend again.
Next appointment is one week away, that's where we'll get the basic rundown and referral to the endoctrinist or whatever he's called.
Thank you all for the good thoughts. Will update.
Beat95yj
Rolling 24/7
I stopped taking that because it plays hell on your short term memory. Plus, I didn’t really need it. They just subscribed it.Gabapentin? It it used as pain control somewhat-
Yota Up
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We finally told her.
We wanted to wait for 2 reasons. 1 is that she doesn't have much of a poker face and would have started school with a frown all day that would repel making friends. 2 is that we didn't have answers to her potential questions which would result in her carrying a heavy load on her head. No reason to put her through that, so mom and I alone carried the load until we got a few answers. When we first mentioned she started to freak out but we quickly told her don't worry it looks like it's best case right now. The whole family spent a good amount of time talking together and she was able to go to school the next day and smile and carry on like normal. Yesterday she was talking trash to me about my wrinkles, saying I'm old or something. I replied "well at least I don't have a tumor", BOOM, take that kid.
So yeah, she's handling it great.Anyway, we met with a hormone doctor and diabetes doctor so far. Still have to meet with a bone doctor and a gyno.
But good news from the hormone doctor, she said the tumor is really small at only 4mm and that it's very unlikely to be causing the problems with her lack of menstrual cycle. So while the lack of periods is still a mystery we're still working on, at least we have the relief that this tumor is not a big concern at this point. Which is super great because this way when we told her about it we were able to reassure her right away not to worry. The plan is to get another MRI a year from now to see if/how much it's grown.
Another concern was the potential meds I've read about that are given to try and reduce it. They are ergot based dopamine receptor agonists, and some of the side effects are pretty concerning. Lucky for us, again, the endochrinist or whatever doctor didn't even suggest to take any meds yet. She has a few more blood tests to get done before we even turn the page on looking at potential meds, plus we have 2 other referrals to go see to cross off other checklists.
Before it was a new world of unknown concerns, with huge potentials of fear and doomsday. Then was chilled out a little and at this point we're not quite through it, but we're all very positive that things will work out. Just gotta keep trying tests and doctors to figure out the period thing because obviously no period = no child bearing and that would be devastating.
Will revisit after more developments with tests and specialists. TBC.
Thank you to everyone that cares and wishes us well.