Greetings from Newbie on Long Island

[nteeman]

Hi all,

I was diagnosed on 12/16/08 with AN on my left side. Since then I have been researching AN on the web and trying to get a grip as to what lies before for me. This site has been a great source for information as well as a comfort reading other people's posts.  It was time I quit lurking and said hello.

My symptoms started about a year ago when I noticed I was having trouble hearing on my left side.  I went to an ENT and after confirming that my hearing on the right side was normal, the left side was deficient.  The ENT asked me to come back in six months to test again. I did. The results were the same--no better, no worse. A few weeks before this second visit I experienced a facial spasm on the left side of my face. It only lasted a minute or so, and only happens once or twice a day. I mentioned this to the ENT and he told me that if it continues I should come back.  I didn't wait. After consulting with a Chiropractor who previously treated me for a pinched nerve some years ago, she advised me not to wait and go see a neurologist. I did. He had me scheduled for a MRI right away. That resulted in my diagnoses. Now I have an appointment to see a surgeon on 1/5/09 at Mt Sinai hospital in NYC.

I also should mention that I have also noticed slight balance disturbances--when I quickly change direction I seem to need a moment to orientate myself, or when I walk up stairs I drift to the side--things like that.

While I am trying to keep an open mind I do find myself hoping that I can be treated with radiation therapy. My tumor is 2.4X2X1.6cm.   

This is all while my job has been very intense ( due to the recent economy problems) my mom is suffering from dementia and I have been supervising her care from 1500 miles away.
My wife has been very supportive and my kids (8 and 10) don't know anything is wrong with me.

I'm OK most of the time but I have had trouble sleeping and I do find moments when I feel like everything is going bad, but I don't let myself dwell there for long and snap out of it.

I guess that is the end of my 'I got an AN' rant.

Cheers,

Neal

[Keeping Up]

Welcome Neal

I am a newbie too so can offer pretty much no advice.  I am a 'watch and waiter' as this AN is very small.  Didn't stop me from obsessing a lot about it - but that too is improving.  Luckily, I haven't had any issue with sleeping (who could when you go to bed late because of AN research, and get woken up most nights because of little kiddos). 

the crowd here is awesome - and I am certain (just can't remember who) has been to Mt. Sinai in NYC.  I have found tremendous commonality amongst doctors here in Toronto for these suckers, so would imagine while a wider population, it isn't that big of group who does these things week in and week out.

So, welcome - research well, try and sleep and somehow we will all emerge on the other side!

Ann (in Toronto)

[Kaybo]

Hi Neal and welcome to our special little group!  As I have said before, you will not find a better or more caring group of individuals.  I had surgery a long time ago and even though my life has gone down a bit of a different road than I thought, I have a wonderful life now!  Feel free to ask anything!

K

[sgerrard]

Hi Neal,

Welcome to the forum. You will probably be getting some treatment for an AN that size, rather than watching and waiting. There is every reason to believe that the outcome will be just fine, it happens all the time, so be optimistic at this point. As far as I know, radiation is still possible at that size, although it is starting to be on the big side for radiation, since swelling is more of an issue the bigger the AN is. There are some very good surgeons out there as well, so if you go that route, don't hesitate to look around and find a good one.

I suspect the sleeping difficulty is due to anxiety, which is quite normal to have when you get a diagnosis like this. I think you will find the anxiety subsides as you sort out what you are going to do. As for ranting, that is why we are here, so hopefully you will have some more to share with us, you can't get away with just one. 

Steve

[leapyrtwins]

Hi, Neal and welcome.

I love it when lurkers turn into members - makes it much easier for us to help them in their AN Journeys.

If you're looking for another opinion, after you go to the appt. @ Mt. Sinai, I believe Drs. Roland and Golfinos are in NYC and they have an excellent reputation.  Several forum members have been treated by them.

Good luck and keep us posted,

Jan

[JerseyGirl2]

Neal,

There's going to be a lunch get-together for New York area ANers on Saturday, January 10 (place to be determined, but will be near Penn Station, etc.), and it would be great if you could join us. You'll meet people who've had a variety of AN experiences and, hopefully, get some questions answered and feel more positive about the AN journey. For more information go to the AN Community section of the Forum, and look on page two of the topics -- "New York Area ANers" is the one to click on. (I'm not computer-savy enough to provide you with a direct link here -- sorry). Debbi and Wendy are the organizers and I imagine they'll be giving us some more information soon.

Sounds as though you're doing all the "right things" regarding research, etc.

Catherine (JerseyGirl2)

[nteeman]

Neal,

There's going to be a lunch get-together for New York area ANers on Saturday, January 10 (place to be determined, but will be near Penn Station, etc.), and it would be great if you could join us. You'll meet people who've had a variety of AN experiences and, hopefully, get some questions answered and feel more positive about the AN journey. For more information go to the AN Community section of the Forum, and look on page two of the topics -- "New York Area ANers" is the one to click on. (I'm not computer-savy enough to provide you with a direct link here -- sorry). Debbi and Wendy are the organizers and I imagine they'll be giving us some more information soon.

Sounds as though you're doing all the "right things" regarding research, etc.

Catherine (JerseyGirl2)

Thanks I'll check it out.

Neal

[fbarbera]

Neal,

My AN was slightly bigger than yours and after consulting with surgeons and radiotherapists, I decided on treatment with CK.   You can read a detailed account of my experience (both consulting with doctors and choosing a treatment, as well as post treatment) in my website below (in my signature line).  You can try posting questions about radiation as an alternative at the cyberknife online forum:  www.cyberknife.com.  volunteer doctors at that site will respond promptly to any questions you might have about GK or CK.  

With a tumor the size of ours, you are likely to hear different opinions from different doctors.  My experience was that surgeons told me that surgery was the only way to go, but when I spoke to doctors trained in GK or CK, they concluded that I could safely treat my AN with those methods.  The important thing is to receive multiple consultations from doctors who are trained in different techniques (surgeons, GK, CK, etc.), so that you receive complete information.

There are some other links/resources on my site as well.  Hope it's helpful.

Best wishes for a happy and healthy new year.  

Francesco

[Tisha]

Hi Neal,

I'm glad you found this forum.  It was a lifeline to me when I found out about my AN 2 months ago, and has been where I have read most of the information I know about AN's, or the people have pointed other websites to me to go research.  It is an amazing support group.  I had many sleepless nights for the first month or so after I found out.  The worry was exhausting.  I think the more you learn about your AN, and arm yourself with the options available, and start becoming proactive in your journey, then you may feel more at ease and begin to rest easily again.

The one thing that made me feel more in control was finding the best facilities for my individiual preference of treatment (radiation).  I had a letter written up, and sent each facility/doctor my letter and MRI and audiology tests.  From everything I read, your AN is not too large for radiation, but of course a doctor would have to take a look at your MRI. 

The hospitals I contacted were Johns Hopkins, Stanford and Beth Israel.  I liked the hypo-FSR treatment, and decided to pursue that path.  Johns Hopkins uses the novalis machine, Stanford and BI use the cyberknife.   They do basically the same thing, but the cyberknife is more accurate in targeting the tumor.  I decided on Stanford with Dr. Chang and his team. 

It's funny that you mention your ENT didn't send you for an MRI?  Mine didn't either, what's up with that?  Why wouldn't they do that, it's so odd.  She misdiagnosed me and said she thought I had meniere's disease, patted my head and sent me of my way.  I found out about neurotologist from a meniere's disease website and made an appt. with one, who immediately had me take an MRI and found the tumor. 

The archives are full of great info, too.  I even PMed a lady who had hers done 3 years ago (cyberknife) to see how she was doing, wondering if she even visited the boards anymore.  She contacted me within a few days and has been great support, too.

It's nice to know there are others out there that are experiencing this same bizarre weird turn of events, and we can lean on each other's shoulders.  Although I've been the one doing more of the leaning the past 2 months!  And these great people have very strong shoulders!  Take care.

Tisha

[1cANAdian]

Welcome Neal!

As noted already, you'll find lots of good advice and good people on this forum.  Stay focused and positive, and you'll get through this AN thing before you know it.

Having recently gone through surgery to remove a 4+cm tumor, I can say that, for me, dealing with the other issues you are facing would be way more traumatic than the AN.  I wish you well on all fronts, and admire your dedication and energy. 

Happy New Year!

Ken

[Mickey]

Hi Neal! I`m from metro nyc area also. Presently W+W but as most all of us have researched all choices. This is a great place to be with such nice people with a great deal of knowledge. As far as Jan. 10th keep it in mind. Alot of NYC, NJ area AN`ers with interesting experiences. Mickey

[MAlegant]

Hi Neal,
Welcome but I'm sorry you have an AN.  On the other hand, this is a great group to use as a resource, it was also a lifeline to me.  My tumor was larger than yours (and not an official AN).  You can see from my signature that I had surgery last summer.  They got all of the tumor and I am doing fine, coping with some after-effects, but recovering pretty well.  I did a lot of research, got more than one opinion and then just concentrated on getting on with things.  I did have to use medication to sleep at night and to remain calm once I had a surgery date, but all of those things were necessary at the time.
I am wishing you all the best on this journey.
Best,
Marci (from Ohio, formerly fellow East-coaster from Philly)

[Jim Scott]

Hi, Neal:

Thanks for deciding to post.  As many will tell you, you're going through the hardest part of this experience right now.  The initial AN diagnosis and the sometimes excruciating decision whether to go with radiation (assuming that's an option) or surgery.  I did both as part of a carefully planned assault on my large AN, and the plan was successful.   Feeling anxiety at this point is perfectly normal - we all did that.  As you probably realize, you have to push past your fears and worries and the 'what-if' mind games as you educate yourself and go through doctor consultations, finally coming to a point where you know deep down that you've made the right decision as to the form of treatment you'll have and who will be doing it.  Being near Manhattan, you have access to some excellent doctors and facilities, as other New York-area posters will attest.  I think you'll do just fine and of course, we're here to help and advise whenever you need us.  We know what you're going through.

Incidentally, where on 'The Island' are you located?  Although I've lived in Connecticut for almost 40 years, I was born in Jamaica, Queens and grew up in West Islip, next to Babylon.  I haven't been back in years but have fond memories of the place.  I still consider myself a 'New Yorker' but primarily, I'm a (transplanted) 'Long Island Guy'. 

Jim

[nteeman]

Wow, thanks for the great replies. I have been all over this forum and getting a good feel for the people and taking in lots of info. I wanted to respond to a few of you:

fbarbera: I read most of your link info yesterday and I immediately bookmarked it. I found a CK facility near me (Winthrop Hosp in Mineola) and I plan to contact them no matter what the surgeon says--I want to hear all options. I was glad to read that someone with a similar size AN was able to received CK. I hope it is an option for me too.

Tisha: Thanks for the kind thoughts. My (former) ENT has been trying to call me since the diagnosis (he was copied) but he keeps calling my home number while I'm at work. I left him a message with my work # and cell #. I'm interested as to what he has to say.  I'll let you know if he calls.

1cANAidian: It is hard to say which issue is the hardest, but the others I'm sort of used to--the AN is the new one and while the others are at times stressful, I find the AN diagnosis depressing.

Jim Scott: Hey, I was born in Brooklyn but grew up in Jamaica Queens. I now reside in Port Washington.

In a way I feel lucky as there are many resources here in the NYC area.  When I spoke with my primary physician about the AN diagnosis he commented, 'hey, if you're going to have a brain tumor, that's the best one to have.'

Well,  it was funny at the time.
 
Neal

[Sue]

Your comment about what the doctor said about having the "best brain tumor" must be something they all learn in medical school, because my doctor said the exact same thing, practically word for word.  And other's have said that their doctor told them that too.  And I'm sure that it's true, but sometimes I wish that these doctors could spend a day in the shoes of some of the AN patients that are on this board.  I sometimes think that some doctors don't appreciate the severity of some of the symptoms that people can have. 

Also I suggest that you read this article about how your balance system works.  It's very informative and helps explain what happens when things go haywire and how our body copes or doesn't cope with that. I had some of these symptoms several years before I knew I had an AN.

http://www.hearinglosshelp.com/articles/balancesystem.htm


Good luck to you,

Sue in Vancouver USA