Brain....new MRI results

Brain MR to check on progress of my pituitary tumor was done earlier this week. I've had a 1mm change, which looks like it is pushing on the Optic Chiasm (sends signals along to the brain via optic nerves and fibers).

Out of the bazillion brain MRs I've had over the last 7 years, this is the first to note a growth towards the chiasm (pretty important piece of equipment).

I picked up my results and info, and have a call into my doc since this is a change. How we deal with it now, will be different. When a tumor intereferes with vision, it's not good.

I'm far from a radiologist, but giving it my best try....not your parts in your brain don't necessarily match what's in the book..lol. I did compare to last year's MR and there has been a change. The hospital's radiologist compared it to one done in 08 and noted the change.

Fun stuff!

And what happens next then....????

Can it be removed?

Oh gosh.. sorry about not so good news. what can be done about it?

Risa

this has more angles than a giant stained glass window.

first, we need another more finite and detail scan of the pituitary and the optic chiasm to identify if the tumor is pushing up into the chiasm/optic nerve.

if so, then i need to go visit my neuro-endocrinologist to discuss this, and how to treat.

surgery is front line and treatment of choice, but for me very high risk. second line is gamma knife, and third line are some medications possibly some other medical/chemo treatments.

problem is, we have no idea if this mass is cancerous or not--only way to really know is biopsy.

the good thing is that i have 3 high end hospitals that i would go to within a 4 hour driving distance for treatment.

the risk/reward issue needs to be really mapped out.

why this thing has decided to grow is a concern--all the mega amounts of radiation from all the testing i've had is a concern.

so many questions lie here. hopefully the first step will be to order another MR.

i'm getting in to see the ortho surgeon for my shoulder in a week. too much stuff.

the one argument that we must cross is that my cardiac situation is relatively stable. waiting 3-5 years to treat may not be the best.

many, many questions to answer with some very deliberate thinking.

That has to be very scary and stressful on you. In Seattle there is a day surgery center that removes pituitary tumors. They go in through their nose and are back home that evening.

But not all can be removed that way but I hope yours goes as well as possible. It's totally amazing what kind of procedures can be done now that don't require hospital admissions. Not only fast but far less invasive. I had three in ten months and ten years ago all of them would have been a day or two stay in the hospital with much more pain, collateral damage and scaring.

Marc, this is stressful and you have all my sympathy.
Keep us posted.
Hugs

there's a couple methods that can be done--like the transsphenoidal (through the nose) approach, or underneath the upper lip.

i've talked with the docs about this already, and no one wants to do this unless absolutely necessesary due to my high risk. no in and out. definite hospital time. going through the nose might be totally a non-start due to my nose being screwed up to begin with. no room on the left nostril to go up. i need a total nasal reconstruction for the really, really deviated septum and bone build up. That surgery has been put on ice unless it's life or death--too much risk.

stroke is the mega concern, and bleeding. just stopping the some of the meds that prevent clots can kill me, and doing the surgery can throw clots and other complications that can kill me. no easy solutions. gamma knife may be an option, but it can be indiscriminate.

i have to wait a bit, hear from my docs, and figure out the next step.

first is to validate the latest findings, which already is turning into a pain in the....

thanks everyone.

I know you have the resources to chose the very best of doctors to help you. "Calculated risk." That's what it all comes down to. Keep us posted. We're behind you all the way.

Cheryl

Oh Hugs.... I'm sorry that the tumor is getting bigger. I hope it can be removed easily. Maybe that will alleviate some of the migraine issues.

Crossing fingers.
Alli

Hi Marc,

I just wanted to tell you that my thoughts are with you. I'm glad that you have such excellent doctors and hospitals available to you.

Take Care,
Willow

thanks everyone.

one very important thing i'd like to say. even if you have access to the super-duper best facilities and docs, most of the time, unless all the stars are lined up do you get a positive result or resolution.

our good friend cheryl i'm sure will agree with me. it takes a TON of effort, time, and brainpower to muscle things into place. on one side a backwater small town may have the brainpower maybe to recognize an issue, but you have to get the megahospitals and docs to agree as well.

egos higher than Everest protrude left and right. it's a tough battle. sometimes you are right, sometimes wrong.

i've had some of the worst mis-diagnoses from the "best." just 2 years ago, i was on the verge of being diagnosed with a degenerative neurmuscular disorder that looked a lot like ALS....nope, it was the combination of some medications and side effects. that little screw up cost a lot in terms of money, time, and life.

i use some old business methodology such as 360 degree review. i have each doctor review others work, so everyone's "naked." from there, you shake out the good and bad information and ideas. this is tough to do and very time consuming.

all at the same time, you're getting worse, and the doc's just either don't give a flying fish, or they might actually do something.

but again, you guys are quite gracious, and i appreciate your kind words.

mgb

Gamma Knife....that's my vote, if such is valuable.

You are an amazing patient. I've tried to encourage Cheryl to write a book as her experiences would be such a help to other caretakers.

I also think you should write a book. Your methods are really amazing...ie 360°review.

Oh Marc, I hope they'll find a way to remove the tumor.
I am sure this is very worrisome, and certainly it would be better to get rid of this pesky thing.
If only it was simple to do. Again, I hope they'll find a way.

Risa

Oh, Marc..you poor guy. Thinking of all that you've endured..breaks all our hearts.

Praying, with everyone else..God bless you.

It is a worrying time for you Marc, but I know that you always have the best medical teams at your disposal and with your deep knowledge of things medical you will get the best help I am sure.

I wish you all the best outcomes and that any uncertainty will be resolved soon.

Senna

I cant really add anything to the others, but just wanted to say, I know we all on this community are thinking of you, and hope with you for a positive outcome.

My best Marc. Thinking of you.

Pen

thanks again for the kind words ladies and gents.

i'm more irritated than anything. i went back through and read 6 scans that i have on CD going back to 2004. there has been incremental change, using some of the software measuring tools. it looks like the grumpy mass of unknown stuff is having a mass effect (but I'm not a radiologist--arrrgh). in the latest reading, the radiologist says it is pushing on the optic chiasm.

it boils down to...
a. it's grown
b. the radiologist is wrong
c. the radiologist is right
d. the MR machine itself, and its software is rendering it's own image which could be right or wrong

we're down to about 1-2mm that distinguishes a tumor pushing on the optic chiasm or not.

the range of MR machines range from 1, 1.5, and 3 Tesla magnets.....the higher the magnet size, the more accurate and clear the picture.

the last test was with a 1.5 T Siemens MR machine. last year's MR was on a 3T Siemens MRI. so there can be discrepancy here, however, the radiologist read my 2008 MR from a 1.5T machine against the latest 2010 MR, which is done on the same machine, but with some software updates.

so i may have some standard here. it can be really tough to have continuity. without that, it makes measurement and comparison of growth hard.

now that i've made everyone drowsy, take a nap and get some rest!

Thinking of you, Marc, and keeping you in my prayers. Please keep us posted as we all worry about you.