Medulloblastoma

[tiredofwaiting4answers]

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

[rumpled]

I found this on a website:

"There are a few rare, genetic health syndromes
that are associated with increased risk for
developing this tumor. For instance, a small
number of people with Gorlin’s Syndrome
develop medulloblastoma. (Gorlin’s Syndrome is
an inherited tendency to develop basal cell
carcinoma in combination with other conditions.)
Scientists have identified alterations on a gene
called PTCH which may be the common link.
Similarly, genetic changes in the APC and TP53
genes are involved in two other inherited
syndromes, Turcot and Li-Fraumeni. People with
these syndromes tend to develop multiple colon
polyps and malignant brain tumors.

"Genetic” does not mean “inherited.” Genetic
changes are those that occur in the DNA, or
the inside blueprint, of a cell. No one knows
what triggers these changes. Some, but not all,
genetic changes can be inherited. Inherited
means abnormal genes are passed from one
generation to another. Medulloblastoma is not
an “inherited” disease."

I understand where you are coming from - my dad died of a brain tumor and I have brain tumors on my maternal side too, so talk about feeling trapped in my DNA...

However, headaches are not a specific symptom, balance can be ears and fainting - how is your BP? Any POTS? Have you looked for other reasons - migraines? Hang in there.

[tiredofwaiting4answers]

Thanks for your comments.

I have been diagnosed with migraines, but because the pain is non throbbing and no nausea im skeptical.

I did get my LP Cytology report that cited small lyphocytes present in an amorphous proteinous material...whatever that means, I have also had a lymph node biopsy that cited an abundant amount of lymphocytes and scattered histiocytes,  I do not know yet if ther is any correlation.  I am scheduled for a colonoscopy on 10-2, because in the Catscan there was "fullness in the rectum"  Again, whatever that means...

My mother also died of cancer, mestatic gastric, so I am just worried that I may have a tendency.  It sounds like you may understand....

Again thanks for your help.

[rumpled]

Have you looked into the autonomic system in regards to the fainting?

Migraines can have different characteristics - I have them. Some of mine are visual and do not hurt. Some of mine hurt but I do not throw up, and some of them I toss my cookies.

[tiredofwaiting4answers]

no I have not looked into that, but I will Thank you.

I also should note that I have had a persistent cough now for about 3 weeks, feelis like a tickle in the back of my throat...My ENT wants to remove lymph nodes because of an abundant number of lymphocytes and histiocytes.  Lymphocytes were also cited in my LP cytology report....

[rumpled]

Let us know how that goes.

[tiredofwaiting4answers]

saw the neurologist yesterday.  My EEG was "mostly" normal, with a few spikes coming from the left side of the brain (where my lesions are), but not enough for seizure activity, so he ruled out epilipsy.  He also ruled out MS.  Then he admitted that he did not know what was going on, but there was definitely "something".  He has reffered me back to oncology.  

I also have had swollen tonsils since friday.  No fever, sorethroat or any other symptoms.  They are huge, the ENT used the word "impressive".  He gave me some antibiotics to try.  I think they are beginning to get concerned about lymphoma.  

Can lymphoma cause lesions in the brain?  I dont know what to think anymore...

[Cj_1in5]

I like your username, i think we all would use it if we could!
My sister in law went for Years with symptoms not Exactly yours, even to other states and suposedly the best hospitals trying to find out what was wrong with her. She had MS! They can find it  through a Spinal Tap! Everyone else had ruled MS out all those years, yet thats all they had to do and didn't.
Just thought that might help you decide if you wanted another option.
Hope this helps a little :)
Cj

[rumpled]

My uncle has lymphoma and he has no lesions. I think the symptoms are more subtle - fatigue, sweating, etc.

I agree with CJ - why not a spinal tap? (ow...)

[tiredofwaiting4answers]

I actually had a spinal tap done about 2 weeks ago.  My protein was a bit elevated but other then that it was normal.  No bands were detected.  I hva ealso had an MS battery, multiple eeg's and 2 different neurologist have said that they do not beleive it is MS, although in the beginning they were sure of it....

Now the cytology on the csf fluid was a different story.  It was noted to have small lymphocytes present.  Ths is why they sent me to oncology.  I have tried looking all over and can't find the correlation, but again, both doc sent me to see an oncologist...

To rumpled, I did see a cardiologist yesterday, they wanted to check my heart out because of the fainting.  He said more then likely I had Autonomic Disorder.  I am supposed to keep a log of my BP, but he said there is not a treatment and other then occasionally fainting it should not cause me any issues.  Just thought you might want to know you were on the right track :)

I have an appt today with my primary and one tomorrow with the oncologist.  Ill let you know how it goes.

[tiredofwaiting4answers]

I guess I should mention that I also had a lypmph node biobsy that also showed an abundant amount of lymphocytes and scattered histiocytes.  These are all the reasons they are leaning towards lymphoma...

[rumpled]

I hope that if it is lymphoma, it is not an aggressive type. My uncle is actually on wait and monitor - so no treatment until it hits certain levels as it is a slow type.

Woo hoo! *Punches air* I hit it on the autonomic! Who says you cannot diagnose over the intenet! (er, I do...)

[tiredofwaiting4answers]

Thanks, now they are looking for Primary Central Nervous System Lymphoma.  I am scheduled to see a Neurosurgeon and a neuro Opthamologist.  The oncologist really had no answers for me, just like the rest...Apparently the only way to diagnose PCNSL is with a brain biopsy...

I agree we cannot diagnose oursleves, but we do have to be investigators.  I brought this diagnoses with me to the oncologist and she is running with it...so it is important to take an active role!

[rumpled]

My cousin has a CNS lymphoma as well - he had the biopsy too. That may account for the fainting - my cousin fainted a lot.

Yes, taking an active role is important. Let us know how it goes.

[tiredofwaiting4answers]

Thanks, I will. i see the neuro opthamologist tomorrow, and a new MRI on Thursday.

[tiredofwaiting4answers]

Hey Hope everyone is feeling well today...

i saw the neuro-opthamologist, he said that he didnt see anything abnormal in my vision.  Unfortunately that doesnt mean much...only that there are no symptoms in my eyes to help come up with a conclusion.

Saw the nuerosurgeon, who moved my appt up from Nov 2 after reviewing my 1st MRI, only to find out that the lesions have disapeared on my 2nd MRI...again, this means nothing other then whatever caused my lesions has been wiped clean with the steroid pack I was given when they thought I had MS....which means now, I have to repeat MRI's until they come back, because according to him, they will come back...

Im so frustrated....

[rumpled]

How... not fun...
At least you are getting followed and you are on the doc roller coaster (that is how I feel).

Steroids are evil.(tm)
Hang in there.

[tiredofwaiting4answers]

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.

[rumpled]

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?

[tiredofwaiting4answers]

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?

[tiredofwaiting4answers]

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?

[rumpled]

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

[tiredofwaiting4answers]

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?

[rumpled]

I hope all goes well with the surgeries.
Let us know.

[horselip]

Rumpled they have a version of the flu shot that does not have the preservative. Also the nasal version does not have it either.

[rumpled]

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.

[tiredofwaiting4answers]

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

[rumpled]

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.

[tiredofwaiting4answers]

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.

[rumpled]

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.

[tiredofwaiting4answers]

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....

[rumpled]

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.

[tiredofwaiting4answers]

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...

[crwstar]

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 ;-)

[tiredofwaiting4answers]

Thanks for replying!  I am seeing the nuerosurgeon today, I will let you all know what he says.

What is the daily thread?

[rumpled]

There is another new thread just to check in.

[crwstar]

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 ;-)

[North48]

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...:)

[tiredofwaiting4answers]

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

[North48]

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.