New to site and new to AN - Need someone to talk to

[KenJen]

My husband diagnosed about 4 weeks ago, been to tons of docs locally talked to Indiana and , looking at Loma Linda - proton
Don't feel good about surgery, at least in our area (Wichita KS) Small AN but causing headaches, ear noises, balance problems,depression,etc.  I am not sure how to navigate this web site but I am trying.
I have many questions and would really appreciate someone talking to me.  I seem to be the one on my feet and trying to
hold down my job is difficult. Kenjen

[Battyp]

HI Kenjen,
  You are NOT alone!  You just reached out to the most exclusive caring group you could have found.  We will do our best to lift your spirits, answer your questions and get you through this difficult but not unsurmountable process!

Hugs,
Michelle

[cookiesecond]

Hi Kenjen,
I am glad you found this site. It offers a great source of wisdom and inspiration.Any queston you can think of can probably be answered by someone on this site. There are many on here that have researched and researched and many that have been there done that.
Each AN journey is different but there are many of us that have success stories.I personally chose surgery after weighing out the options and I got along good. I had surgery 8-2-05 and the only lingering issues I have are balance and ssd. My tumor was 3+ cm and I  had already lost the hearing in my an ear.As you will read, there are some that had radiation with good outcomes. Keep researching and we will pray you have peace with your decision.Having a medical team you feel confidant in means the world!
Take care,
Lynn

[Joef]

we are here to help! ..tell us some more .. tumor size .. symptoms ... age.... etc....

[SuzeAN]

Hi Kenjen,

This is to place to be, there is so much information here as well as caring individuals with support for you both!

You are in the information seeking stage and that can be overwhelming at times, but surf thru the information slowly. Meet with the doctors and be open-minded, some have very unique personalities....

I had my 2.5cm AN "Cyberknifed" in Oct 2005, so far so good.  There is a website www.cyberknifesupport.org, which is very informative on that subject. I travelled out of state too for treatment.  Then of course is the House Ear Clinic, I don't know the website but that is where I looked for info on surgeries.  Good luck to you,

Cheers,
Suzan

[FranDS]

Hi KenJen -

I'm a newbie too, but I can, without a doubt, say that (1) we all were in the same boat at one time or another and have felt (or are feeling) exactly as you and your husband do and (2) this group is a very caring, helpful and supportive.  I can't count how often they've responded to newbies like you and me to give us hope and information.  I don't know how big your husband's AN is but there are several options and both ANA.org (besides the decision forum) site and the cyberknife site are great for information...go back and read all the old discussions in each of forum groups (pre-op, post-op, general discussion, surgical methods, and radiosurgery.  You'll find a wealth of information.

I've been researching my AN now for 2 months since I've been diagnosed with a 7mm and am close to deciding on CK (cyberknife).  Ask away, and we'll respond as well as we can but, most of all, with wholehearted honesty and compassion.

Fran

[chelsmom]

Hi Ken Jen.... My daughter is Chelsea.  You can look at the history on this site and see her situation.  We are from Loma Linda and have heard great things about the proton treatment but we took Chelsea to UCLA for her AN.  She had a large tumor(4.5 cm) and these are not usually treated any other way but surgery.  Her doctor said if he has to leave some of the tumor behind because of the location and the brain stem then they would have her come back in 3-4 months for radiation.  When I asked him about the proton treatment he said that this is used with small uniform shaped tumors.  He perfers the Novalis (sp?) treatment in her case.  Like everyone will tell you, get a second opinion.  We will be thinking of you.    Chelsmom

[ppearl214]

Hi KenJen and welcome!  Oh, we are so here for you both and know that there truly is wealth of info here posted by all of us living through this.  Being in LomaLinda as you are, Proton is there, as well as here in Boston.  I've heard pros and cons on it but nothing etched. I do know that a man here, BostonJake, has been going through Proton here in Boston and has been posting his experiences in the "RadioSurgery" forum here on the site.

Like you, I was overwhelmed, knowing there were so many options also available to me for my treatment. I also opted for Cyberknife and do not regret my decision.

Regardless of what you decide, please stick with whatever your decision is.. never look back and know that your decision is best for you.  Anything we can do to help...we're here! Please hang in there!

Phyllis