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4:34:00 PM EDT
Feeling Frustrated
Hearing my dad getting ready to grill, kids, hubby, pets
Doctor Doctor!
So, I saw the uber-neurosurgeon. He was very nice, intelligent, and concerned, the nicest of the specialists I have seen so far.
Just to back track... this is the kind of tumor I have...
So, I had the ct scan. And, I have results... The tumor/mass is this (copied from the ABTA ):
"Epidermoid cyst/tumor:
These cysts are more common than dermoid cysts. They are usually benign, but they will slowly recur if not removed completely. Unlike the dermoid variety, they occur more frequently in the brain than in the spine.
Epidermoid cysts are most common in middle-aged adults. The most common sites in the brain for these cysts are the cerebellopontine angle (see figure 3) and the pituitary area.
The treatment of choice is surgical removal. "
Dr. B, confirmed what I pretty much already knew... it is all about location, location, location.
This epidermoid or chordoma tumor is in the worst possible spot it could be in, very near the nerves and vessels that supply the ear and entire right face/throat area.
Surgery would be extensive and difficult.
There would be a high percentage of a chance of losing hearing in my right ear, and facial paralysis, as well as other posibble difficulties.
His recommendation is this: Have the repeat 'closed' MRI, under sedation, in early December at the MS Center. Come visit him afterward with that new MRI, and the old ones, from April, that he reviewed today.
Dr. B. will then compare them and see if the tumor is behaving as expected, which is being very slow in growth and non aggressive.
If yes, then we will keep watching. If it's growth is extremely minute, less than a 1/2 a millimeter a year, it could be some 20-30 years or never before I have symptoms.
If it is slow moving, it will be a wait and watch for the rest of my life.
If the tumor has changed in size or appearance, in six months, or at any point it changes, then we will discuss options then.
All of which are not pretty. Which sucks. Chemo or radiation or other injection therapies will not work on this type of bony tumor. <sigh>
And, makes me feel like I have a time bomb in my head, well, because I do.
So, how am I taking this?
I am relieved and frustrated all at the same time.
I was hoping for a more concrete resolution. And, that is just not happening. I was hoping for a plan with a beginning and an end. Not a beginning and many options... but, it is what it is.
Relieved that I do not have to have my head shaved and brain cut into any time soon. However, the possibility still looms. Ugh.
It will take me a day or two to get my head around this, I guess. I feel like Cin's picture of the woman trying to hang on to the brain again! LOL
Thank you for all your prayers and support. I do feel you with me.
be well,
Dawn
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I just got a chance to show David your MRI and he said it's difficult to tell anything from your picture. But, he did say the same thing your neuro-surgeon said (which by the way I'm glad you saw one instead of ENT) that is could never change or cause you any more problems. I hope and pray for you that is the case. I know you are trying not to be too anxious and dwell on all this, but I also know it's got to be difficult to do just that. Hang in there sweetie! De ;)
http://journals.aol.com/erarein63/DesThoughts/ -
Sheesh, Dawn, nothing like non-answers and wait and see. I'll be praying that everything goes as the doctor predicts and that it doesn't grow at all. Hang in there...HUGS Chris
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I have just read about the tumour they have found. My first cousin was diagnosed with a tumour, very slow growing in her brain which was causing seizures. They said it was inoperable, but she has been doing very well and it has not changed much at all for quite a number of years. She has even been able to resume her practice as a dentist, but not completely full time. I am hoping for you to at least have good luck with the progresss of your tumour. I am so sorry though, because I know you will not be free of worry. Something to get used to I guess. Gerry
http://journals.aol.com/gehi6/daughters-of-the-shadow-men/ -
Its easy to say don't worry it will work out when your not in your situation. Just know your in my prayers and I'm here if you need me.
Hugs,
Gretchen
7/6/07 12:46 PM
All of us
Chris, Mickey, Brandon, Jordyn and Ryan