Aa
Medulloblastoma
Hello
My dad had a medulloblastoma tumor and passed away in 1990.
I have recently been told that I have lesions in the brain. I had loads of test, including CATSCAN's, MRI's LP"s, you name it and not one of my specialist can give me any answers. Apparently my lesions and symptoms do not fit for MS, but they don't enhance like tumors.
I have terrible headaches, fatigue, some minor loss of balance, and have had a history of fainting spells with no known cause.
My question is, are brain tumors hereditary? Is there some genetic test that can be done?
I appreciate any input, thanks for reading
My dad had a medulloblastoma tumor and passed away in 1990.
I have recently been told that I have lesions in the brain. I had loads of test, including CATSCAN's, MRI's LP"s, you name it and not one of my specialist can give me any answers. Apparently my lesions and symptoms do not fit for MS, but they don't enhance like tumors.
I have terrible headaches, fatigue, some minor loss of balance, and have had a history of fainting spells with no known cause.
My question is, are brain tumors hereditary? Is there some genetic test that can be done?
I appreciate any input, thanks for reading
Yep .... thats what the docs tell me....it's to small to do anything. This has been so interesting listening to others with the same symptoms.
Keep up your good work and stay positive, thats what we have to do.
Keep up your good work and stay positive, thats what we have to do.
That's exactly how my headaches are!
Thenuerosugeon said it's too small to do anything about. They reffered me to an endo. I had figured they would so I already had made an appt. :).
I also had a colonoscopy this week. They took a biopsy of an inflamed area.
Hope everyone is doing well
Thenuerosugeon said it's too small to do anything about. They reffered me to an endo. I had figured they would so I already had made an appt. :).
I also had a colonoscopy this week. They took a biopsy of an inflamed area.
Hope everyone is doing well
Hi!
I just wanted to say hello and hope all has gone well. Luv your name and it says exactly how I feel
I also wanted to add that my headaches are like a rod going right thru my eye and hurts on the back side of the eye, generally its always in my left eye and the pit tumor is on the left side.
I wish you well...:)
I just wanted to say hello and hope all has gone well. Luv your name and it says exactly how I feel
I also wanted to add that my headaches are like a rod going right thru my eye and hurts on the back side of the eye, generally its always in my left eye and the pit tumor is on the left side.
I wish you well...:)
Yes, what rumpled said ;-) Its a daily or when ever you want to just chime in and say hi thread.
How did it go at the neurosurgeon?
Hi rumpled ;-)
How did it go at the neurosurgeon?
Hi rumpled ;-)
Thanks for replying! I am seeing the nuerosurgeon today, I will let you all know what he says.
What is the daily thread?
What is the daily thread?
Hi - Wow, you have been thru the ringer. Your user name really says it all for most of us. I kind of wish my case was like my uncles. He started stumbling around, went in for a scan, they found a "large" pituitary tumor, he had surgery and he's doing pretty good. Not so for most of us, eh. I also, have a right sided microadenoma and am told my headaches or headpain is not caused by it. Keep us posted on how you are doing.
Hope you are well.
please feel free to join in on the daily check in thread if you want ;-)
Hope you are well.
please feel free to join in on the daily check in thread if you want ;-)
I think doc's get so blinded by what is normal, and they kind of feel intimidated when you bring something to them that makes sense...
Ive started getting spots on my hands and arms, small, but noticeable. I also have two new moles...
Ive started getting spots on my hands and arms, small, but noticeable. I also have two new moles...
Oh - I know!!!! Doctors think pit tumors do not cause headaches. I had headaches for years and 98% of the docs said it was not related but 99.9% of the pit patients have them...hmmm...
hmmmm....
Yes, I have a nice tan now due to my ACTH - the age spots, not fond of.
hmmmm....
Yes, I have a nice tan now due to my ACTH - the age spots, not fond of.
wow, that is high!
I know im confused as to why they still think this may not be the cause of my headaches....as I read online, my headache's sound exactly like one that may be caused by the microadenoma, frontal, behind the eye....
Plus it may answer all sorts of issues i have been dealing with for the past 2 years....
I know im confused as to why they still think this may not be the cause of my headaches....as I read online, my headache's sound exactly like one that may be caused by the microadenoma, frontal, behind the eye....
Plus it may answer all sorts of issues i have been dealing with for the past 2 years....
Very funny that they put "without mass effect"??!! Size may not be the factor here, but even a teeny pit tumor can wreak havoc with hormones... mine currently cannot be seen but is pumping out ACTH like crazy - my levels are 3117 (normal is 6-28).
Find a good neuro-endo, and get copies and do not let them dismiss symptoms. It takes a while to find a good one sometimes. It took me 12 years.
Find a good neuro-endo, and get copies and do not let them dismiss symptoms. It takes a while to find a good one sometimes. It took me 12 years.
Hi rumpled :)
Ok got my test back, here is a hint...they referred me to a Nuerosurgeon...
Here are the findings
1. probable small right sided pituitary microadenoma without mass effect on the adjacent structures (1-2 mm)
2. small retention cyst in the floor of the right maxillary sinus (11mm)
the were not able to inject the contrast, I have a real problem with IV's, my veins tend to blow...They said it should not affect the findings, but I question that...
Hope all is going well for you! Hope you are feeling better.
Ok got my test back, here is a hint...they referred me to a Nuerosurgeon...
Here are the findings
1. probable small right sided pituitary microadenoma without mass effect on the adjacent structures (1-2 mm)
2. small retention cyst in the floor of the right maxillary sinus (11mm)
the were not able to inject the contrast, I have a real problem with IV's, my veins tend to blow...They said it should not affect the findings, but I question that...
Hope all is going well for you! Hope you are feeling better.
The pituitary can impact the entire body and my lymph nodes are all enlarged. Enlarged often means a pit tumor is there. Hope pit MRI was done right (dynamic - read my other posts). Depending on the hormone, your immune system goes bye bye. Mine still is impaired. I had such poor healing that they kept making me take AIDS tests over and over and sent me to an AIDS doctor! I was negative, but they would not believe me. I took over a year to heal at times and I am not diabetic.
Read up on testing - it is easily goofed.
Read up on testing - it is easily goofed.
Hey all,
its been a while...
I have recovered from my tonsillectemy/biopsy with good news. The mass in my neck was benign, with reactive lymph nodes- which I was told was ok, so that is one area down....
My neurologist ordered an MRI of the pit gland, which seems to show an enlargement, so here we go...
I will let you know as things progress. Hope everyone is doing well
its been a while...
I have recovered from my tonsillectemy/biopsy with good news. The mass in my neck was benign, with reactive lymph nodes- which I was told was ok, so that is one area down....
My neurologist ordered an MRI of the pit gland, which seems to show an enlargement, so here we go...
I will let you know as things progress. Hope everyone is doing well
I have never been able to find a doc with that version - I always ask - I will try more - Thank you.
I cannot take the nasal versions due to my immune system.
I cannot take the nasal versions due to my immune system.
Rumpled they have a version of the flu shot that does not have the preservative. Also the nasal version does not have it either.
So sorry to hear that. Try putting the loiton on one of the bath scrubbers with a handle. You can put it on as if you were washng your back :) you may need to use more, but at least you'll get it on! They should provide Monkeys to fix their mistakes when you go home!
I went back to nuerologist on Thursday, he reviewed my MRI. He said the lesions were still there, all though one looked smaller, He also found a new "black" lesion on the right side of the brain. He, of course, had no idea what it was. He also "thinks" there is something on the pituitary gland...so now I have to go have a pituitary MRI. I am currently recovering from my tonsillectemy and lypmph node biopsy. Im a little aggravated that the scar is more like 3 inches across my neck, vs the 1 inch I was initially told, but what are you gonna do?
I went back to nuerologist on Thursday, he reviewed my MRI. He said the lesions were still there, all though one looked smaller, He also found a new "black" lesion on the right side of the brain. He, of course, had no idea what it was. He also "thinks" there is something on the pituitary gland...so now I have to go have a pituitary MRI. I am currently recovering from my tonsillectemy and lypmph node biopsy. Im a little aggravated that the scar is more like 3 inches across my neck, vs the 1 inch I was initially told, but what are you gonna do?
Well, they tend not to look for anything rare, sadly. Sorry about your mom.
I have been told myself that since I had one rare disease, that I cannot have another but I actually think that my odds are now higher, not lower.
i had a lovely experience at the dermatologist. I asked to be tested for thimerasol allergy since I have had a bad reaction in the past in my eyes, no one will give me a flu shot, and now, well, getting the flu is pretty bad for me so instead of doing ONE test, she did the full panel of patches AND stuck them on with tape that I told her in advance I was highly allergic too. Well, come today, she cannot tell what I am or am not allergic too as my back is one red, angry mess that hurts like %#($(%)#. She said it is *angry back syndrome* [it is you did not listen $*%($* syndrome!] and now I have to somehow put cream where I cannot reach.
Joy. I hate my body and oh, I still don't know if I can get a flu shot. :P
I have been told myself that since I had one rare disease, that I cannot have another but I actually think that my odds are now higher, not lower.
i had a lovely experience at the dermatologist. I asked to be tested for thimerasol allergy since I have had a bad reaction in the past in my eyes, no one will give me a flu shot, and now, well, getting the flu is pretty bad for me so instead of doing ONE test, she did the full panel of patches AND stuck them on with tape that I told her in advance I was highly allergic too. Well, come today, she cannot tell what I am or am not allergic too as my back is one red, angry mess that hurts like %#($(%)#. She said it is *angry back syndrome* [it is you did not listen $*%($* syndrome!] and now I have to somehow put cream where I cannot reach.
Joy. I hate my body and oh, I still don't know if I can get a flu shot. :P
BTW, just got my mom's medical records. It seems that she also had an extremely rare cancer. Gastric Adenocarcinoma that mestastisized into a krukenberg tumor. They looked for 8 months for the cause of her ailment, until they found it too late...ALL of her tests, scans, procedures were negative until they could actually feel the palpable mass. encouraging right?
burp money, wow that would be cool...
I did get my films. I aggravate all my docs, by getting copies of EVERYTHING :) sometimes I get them before them!
Im so tired of waiting...I'm sure everyone here understands that. I see my neurologist again tomorrow...I wonder what new tests he will prescribe. New symtoms to tell him about, my right pinky and left eylid have been twitching lately, uncontrollably....my right leg falls asleep after sitting too long...my BP and HR have been extremely eratic lately bouncing from the 160"s/90"s to the 100's/70's and my HR from 85-99....i dont even know if these are symptoms anymore or im just being paranoid, but i figure it can't hurt to bring them all up.
How have you been lately?
I did get my films. I aggravate all my docs, by getting copies of EVERYTHING :) sometimes I get them before them!
Im so tired of waiting...I'm sure everyone here understands that. I see my neurologist again tomorrow...I wonder what new tests he will prescribe. New symtoms to tell him about, my right pinky and left eylid have been twitching lately, uncontrollably....my right leg falls asleep after sitting too long...my BP and HR have been extremely eratic lately bouncing from the 160"s/90"s to the 100's/70's and my HR from 85-99....i dont even know if these are symptoms anymore or im just being paranoid, but i figure it can't hurt to bring them all up.
How have you been lately?
Moo - hey do you burp $$$? Just asking...
I got tons of lymph node biopsies - I finally just gave up. I was supposed to get my tonsils out, but at the last minute, they said I would bleed too much and it was cancelled. That is a nasty surgery for an adult - hope you like ice cream.
As for the MRI, signal intensity, well, it just can be anything - and frankly, I am wondering if at sometime you ate those twinkling lights and they just keep showing up there? I mean, really... also a case for always getting your report. Did you get your films so you can compare them side to side?
I got tons of lymph node biopsies - I finally just gave up. I was supposed to get my tonsils out, but at the last minute, they said I would bleed too much and it was cancelled. That is a nasty surgery for an adult - hope you like ice cream.
As for the MRI, signal intensity, well, it just can be anything - and frankly, I am wondering if at sometime you ate those twinkling lights and they just keep showing up there? I mean, really... also a case for always getting your report. Did you get your films so you can compare them side to side?
it is a roller coaster...
Ok so here is the scoop. From my last post the "Cocky" Neurosurgeon :), said that he didnt see anything in my newest MRI, I received the radiologist report...and got something different...
"the T2 and FLAIR sequences demonstrate non-specific small focus of hyperintensity noted within the left temporal lobe white matter demonstrated on image...This measures less then 5m....Post gladolinim images do not demonstrate abnormal areas of intraparanchymal or leptomeningeal enhancement in the coronal or sagittal planes. Sagittal FLAIR sequence best demonstrates white matter abnormality noted within the left posterior frontal lobe. this is seen on ...This abnormality measures 5 mm in the greatest dimension."
Impression: "There are 2 small areas of abnormal signal intensity within the white matter...."
So it was not exactly a "normal" MRI. Is this the same as the lesions disapearing??? if they dispeared, why would the same areas highlight!!!! I know your not a DR, but tell me something, even if its just a lie!!!! :)
Did I mention I was having a tonsillectemy and a lymph node biobsy on Friday??? I think they just found a cash cow!
Thanks for listening...again.
Ok so here is the scoop. From my last post the "Cocky" Neurosurgeon :), said that he didnt see anything in my newest MRI, I received the radiologist report...and got something different...
"the T2 and FLAIR sequences demonstrate non-specific small focus of hyperintensity noted within the left temporal lobe white matter demonstrated on image...This measures less then 5m....Post gladolinim images do not demonstrate abnormal areas of intraparanchymal or leptomeningeal enhancement in the coronal or sagittal planes. Sagittal FLAIR sequence best demonstrates white matter abnormality noted within the left posterior frontal lobe. this is seen on ...This abnormality measures 5 mm in the greatest dimension."
Impression: "There are 2 small areas of abnormal signal intensity within the white matter...."
So it was not exactly a "normal" MRI. Is this the same as the lesions disapearing??? if they dispeared, why would the same areas highlight!!!! I know your not a DR, but tell me something, even if its just a lie!!!! :)
Did I mention I was having a tonsillectemy and a lymph node biobsy on Friday??? I think they just found a cash cow!
Thanks for listening...again.
Have an Answer?
You are reading content posted in the Brain/Pituitary Tumors Community
Here are 15 ways to help prevent lung cancer.
New cervical cancer screening guidelines change when and how women should be tested for the disease.
They got it all wrong: Why the PSA test is imperative for saving lives from prostate cancer
Everything you wanted to know about colonoscopy but were afraid to ask
A quick primer on the different ways breast cancer can be treated.
Get the facts about this disease that affects more than 240,000 men each year.
