Pre-Treatment Options > Pre-Treatment Options
newly diagnosed
nancyann:
Nice save to my bluntness Bruce,
THANK YOU !!!!!
ps. glad you ' have my back', as the 'younger generation' says.
Good luck with your ENT appt., Nancy
ceeceek:
Hi Bob and welcome to our group.
I too am newly diagnosed but have learned a wealth of info in the last several weeks. There is no way I would have surgery so soon unless there is a huge potential problem...Batty princess was a case that was super rush but so far most of us have had the time to at least consider some options.
I am currenlty waiting hopefully to see if I am candidate for CK. the size of the mass and where it is does limit whether or not you can use GK, but with CK it does not matter. There are lots of info sites about both but so far the most helpful to me has been www.cyberKnife.org if you dont find it that way, just look for cyberknife patient support group and it will come up. It has been major resource.
There are many people whom have also had succesful surgery and I have found that many people on the support groups such as this one tend to have problems which makes it seem worse than it is, as those that were succesfull 100% no longer need said support, so don't panic when you read about the various problems...
My biggest suggestion is get SEVERAL opinions before proceeding. If you are concerned about determining exactly what type of growth you have perhaps you can consider a biopsy..depends on location....research research research.....
AND, Hang in there, alot of info on the web etc. is really outdated. Many more people have these types of growths than what appears on the web etc. So the info is out there, you just have to look look look.
Let us know how it goes.
Ceeceek
nancyann:
Hi Ceeceek:
An FYI: I was told there was a 5% chance for facial paralysis,
I think alot more now when I hear there's a '5%' chance for anything.
It IS worse than it seems as far as I'm concerned.
Regards, Nancy
Sue:
Hi Bob:
I am a transplanted Portlander, living in Vancouver. I suppose you live in the Portland are so it's nice to see a fellow Oregonian (I'll always be an Oregonian, no matter where I live...) on the forum, although I'm sorry you have to be here. I too, was shocked to learn that I have a brain tumor, although after a year of not understanding why the doctors couldn't figure out what was wrong with me, it was nice to finally get a diagnosis. My family doctor is through the Vancouver Clinic and I was refered to neurosurgeons who have their offices in the Southwest Washington Medical Center. They are with Rebound. I have Dr. Modha and he suggested I was a good candidate for radiosurgery. Vancouver now has a Cyberknife set up at Legacy, but that wasn't ready yet so we went to Providence at the Gamma Knife Center. So, if you end up changing your mind about surgery, you have the option locally of GK or CK. My procedure was done April 18, '06 and my next MRI is now scheduled for Feb 8th and I really hope that rotten thing will be in necrosis. Die, Tumor, Die!!! ;D
I never had the headaches or extreme balance problems, but I can relate to the light-headed feeling and the lack of concentration. I also have tinnitus (as most of us do) and I have facial numbness on my AN side. That includes the inside of the mouth on that side and part of the tongue. Are we having fun yet? Tinnitus rarely goes away once your brain latches on to it. If you don't have that, consider yourself a lucky man. The "fullness" in the ear that I had did go away for the most part, and I'm glad at least one symptom subsided. My doctor thinks the numbness should eventually go away, but I'm not expecting that to happen so I can be pleasantly surprised if it does. I'm just hoping nothing gets worse! I doubt "watch and wait" is an option for you since your AN is already at 2.5 cm. You want to kill that thing sooner, rather than later - - at least that's my opinion. It's slow growing, but somewhere along the line it finally tips the scale so to speak and can cause your symptoms to change/intensify. At least, that's what I think. Anyway, AN's are a weird tumor, because it just depends on where it has decided to grow in relationship to the symptoms that you have. Some people experience extreme problems and their AN is very small. Other's have grown huge AN's without a clue they had it until it was literally life threatening.
And I'll tell you one more thing, Bob! You have found a wonderful site here and these guys and gals are wonderful people. They are vastly more knowledgeable than me, and they will be happy to answer any question you can throw at them. I wish you the best of luck in your treatment and road to recovery. If you would like to talk to me personally, that would be fine. Collins30038@aol.com We can always chat on the phone if you prefer. Or not. Hang in there, kiddo.
Sue in Vancouver USA
ceeceek:
Hang in there, and Nancy makes a good point, 5% is 5%, BUT compared to 5% of other problems is what needs to be weighed....no proceedure is without risks, after all, we all have in common a growth in a bad place period..and no matter what surgical or Gk, or CK, normally a decision needs to be made or that 5% can really turn ugly.
One of the toughest decisions will be for you to decide, what indivudually is correct for you. Each person has there own priorities, I have seen people post that they had say, loss of hearing and it was not big deal where others it was a huge issue. It all depends upon what is of major importance for you...you may even consider the watch and wait, plenty of people do (most definately not for me..but see, that is my personality), keep researching keep asking lots of questions and you will come up with the right proceedure for you and remember we are here for you when it gets overwhelming.
Ceeceek
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