Australian - newly diagnosed and wanting to talk to others

[msmaggie]

Hey Phyl,

I was told that by a surgeon, of course!  Several of them, actually.  The dr. here in Houston was the only one who mentioned radiosurgery as a possible option for me.  Another reason why we need to be so vigilant about exploring all the possibilities that are available to us.  The medical community is not as supportive as they could be about options and unbiased info.

Maggie

[ppearl214]

Hey Maggie and thanks. It's interesting... and there have been many a-discussion around these parts over the years as to how some surgeons will say "stay clear of radio-treatments"... and how radio-docs will say "oh, don't do this form of radiation but do THAT form of radiation". As you note (and as we tout here), everyone needs to research, research, research. I was floored when my (back up) brain surgeon said to me "oh, I'm not going to cut, go get radiation..." (think back all for those that have been here for a while, following my AN journey.....).

Research, research, research... be the best, well-informed patient you can be. As you note, best to arm ourselves with all the info we can so we can sort through what is biased, what isn't and what will be best for our own situations. 

Wellness wishes to all,
Phyl

[calimama]

Hi LuLu

Go the Aussies...
welcome!
I am Canadian/Australian (got citizenship after living there was 4+ years). I am now back in Toronto Canada.

I had surgery 4 months ago now on a med-large tumor. I had only some hearing loss and tinitus before surgery. I had no problems with my face or balance. Following surgery i had bad double vision (which thankfully has pretty much corrected completey in the last month... I think DV is rare, especially for as long as i had it.... I am soooooooo happy it has corrected on its own). I have full paralysis on the left side, but doctors said this should come back. I didn't realize that "temporary" paralysis would take so long to recover, but i am still glad with my choice of treatment. Having a great support system (friends, family, work, this forum), access to great (free) medical care, and feeling 100% (even if i don't look like it at this point) has made all of this manageable.

ps> i sent you a PM, responded to your question about what the CPA is.

good luck with your research and decision making.

Trish

[sgerrard]

Following surgery i had bad double vision (which thankfully has pretty much corrected completey in the last month... I think DV is rare, especially for as long as i had it.... I am soooooooo happy it has corrected on its own).

Hey Trish,

I didn't realize your DV was clearing up so well. Great news!

Hi Lulu as well,

Hope you are getting answers on your questions, especially about radiation. Ask again if not.

Steve

[Yvette]

Hi Lulu, welcome to our little club, I hope you keep us posted on your decisions:-)  I had a 3cm tumor removed translab at the Mayo Clinic in Rochester. Aside from SSD, and slight balance problems only when I turn or move very quickly, I'm doing great. My surgery was a year and 9 months ago. The surgeons told me that with translab, they can SEE the facial nerves right there in front of them so they are much easier to avoid, than they sometimes are with the other options. I have no facial nerve damage, but I was fortunate that my tumor was not "sticky" as they say. Best wishes!
Yvette

[Debbi]

Hi LuLu-

Welcome!  Not much to add to what my friends here have already told you - research, research, research.  This is probably one of the only medical situations that has so many different potential treatments.  It would be so much easier for all of us if there was just one option - then we wouldn't have to be so well informed.  On the other hand, how great that there are so many options!

You may want to visit http://thebraingang.wordpress.com/ and go to Patient Stories.  Our own Muscottie has taken on the project of gathering stories from many of us regarding our own Acoustic Neuroma journeys.  There are some great stories, and they represent all different treatment options.

Keep in touch and let us know how you are doing!

Debbi

[wendysig]

Hi Trish,
Glad to see you post and even happier to hear your double vision is resolving on its own.  Great news!!

Wendy

[Sue Vogel]

Hi Lu Lu,  I'm 55 and just had a Translab surgery on Oct. 13.  My tumor was a little larger than yours, but I am also a professional, in good physical condition,  and needed to be able to return to work as my very energetic self with no facial paralysis.  I have lost all hearing on my AN side and am dealing pretty well with the balance issues.  I get very tired easily, but I know this will improve.  Like most, I was scared to death of the surgery.  I did a huge amount of research about the treatment options and knew all the questions to ask before meeting the specialist.  I was fortunate to have a very experienced and reknowned surgeon who supported my goal of saving my facial nerve.  He did this and removed the entire tumor.  I did not feel that I was a good candidate for radiosurgery as my tumor was not small, and I did not want to leave any parts of the tumor in tact.  I wanted it all removed.  The risks of surgery are great, but so are the risks for radiation.  It is a very difficult choice.  Knowledge is your friend, and only you know your personal  needs and goals.  My surgery turned out well for me.  I feel strongly that the experience of the surgeon makes a huge amount of difference.  Best wishes to you in your research.  Have huge lists of questions for your doctor.  SUE