Author Topic: Just Diagnosed  (Read 3369 times)

TinaE

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Just Diagnosed
« on: April 23, 2009, 07:59:59 pm »
Hi Everyone,
I was just diagnosed yesterday with a small, 1cm or less, AN on my left side. After a day and a half of crying I'm ready to get working. I've been glued to the computer reading anything I can find on the subject. It's really scary but it's nice hearing from people who made it out the other side and are doing well. I'm only 37, healthy, and have minimal symptoms. I have some minor hearing loss, mild tinnitus, and an occasional funky dizzy episode that seems to be only in my head. It doesn't affect my vision or balance. It looks like I'm being referred to Dr. Chang at the Texas Ear Center in Houston. I've researched him some. He seems well educated and published but I can't find any personal experiences with him. I would love to hear from anyone who has experience with him.
Thanks for your help
Tina

Lilan

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Re: Just Diagnosed
« Reply #1 on: April 23, 2009, 08:08:43 pm »
TinaE, Welcome.

My, there do seem to be a lot of us newbies, as others have noticed lately.

Welcome to the forum. It is a shock. It has taken me the better part of a year to really come to terms with it (though my diagnosis was also uncertain for a while).

The more stories I read about people doing well and moving on, the better I feel -- and there have been lots of those on here lately. 8)




Facial nerve hemangioma. Probable dx 7/2008 confirmed 4/2009. Combo middle fossa and translab to remove the blood vessel malformation and snip ruined hearing and balance nerves by Drs. House and Brackmann @ House 6/2009. Doing great!

Kaybo

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Re: Just Diagnosed
« Reply #2 on: April 23, 2009, 08:37:24 pm »
Tina~
Hello from a fellow Texan!!  At least you must be somewhere by Texas if you are being referred to Houston.  There are a number of people who have gone to that Dr., I believe - I am sure they will chime in soon to welcome you!  I am 39 and had my surgery 13 years ago - I do have some limitations (which they don't have a lot of now when they do treatments on AN's so don't let that scare you) but I lead a VERY active and wonderful life!! ;D  Please do not hesitate to ask any question here - we want to help YOU.  If you would like to chat on the phone, I can call you if you would like to PM me your number.  Also, you can check out my blog by clicking the world icon on left!!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

texsooner

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Re: Just Diagnosed
« Reply #3 on: April 23, 2009, 08:42:48 pm »
Hi Tina, sorry about your diagnosis, but you've come to a good place for information. I was just about to turn off the computer and read your post. As you can see in my signature, I do have experience with Dr. Chang here in Houston, and it's been very good. I was also referred to Dr. Chang, as he is a very prominent neurotologist in the Houston area dealing with AN's. He and a neurosurgeon teamed up for my surgery that was very successful back last August. I am still a patient of Dr. Chang's. My next visit with him will be in August(to review my expected clear 1 year MRI)

In my case it was a no-brainer(pun intended) to have my AN surgically removed because of the large size(3.5 cm). However, in your case, you are going to have other options as well(watch and wait and/or radiation treatment). I can't tell you much about radiation, but many others here on the forum can. If the decision for you ends up being surgical removal, I know personally that Dr. Chang is a great choice. I don't know about Dr. Chang's knowledge of radiation treatment as it wasn't an option for me. I believe that he will tell you about that option and also how that would work.

Before you go to Dr. Chang, take time to make a list of questions to ask. He will likely explain a lot of it without you having to ask, but it's a good idea to do so anyway. Also, if you can, I suggest to take someone with you to help you with taking notes. Dr. Chang pulls no punches and tells you exactly what you're dealing with and what all the pros/cons are with the various treatments and the probably outcomes. 

I know it's a scary time for you(just learning what you have), but most people come through this in very good shape. I'm living proof of that and many others on this forum are as well. I was back doing physical activities at 3 weeks post op and back to work 5 weeks post op. Some recoveries take longer and some shorter. Just keep reading here and ask any questions.   

You can look in my profile and email me or PM anytime. Good luck

Patrick
3.5cm left side AN; 11 hour retrosigmoid surgery 8/11/08 @ Memorial Hermann, Houston - Texas Medical Center with Drs. Chang and Vollmer; home on 8/13/08;
SSD(w/tinnitus); dry eye; Happy to be here and feeling good.

alwaysthere

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Re: Just Diagnosed
« Reply #4 on: April 23, 2009, 09:30:17 pm »
Hello,

I'm a newbie also, so welcome. It took a couple of months for this to really sink in before I started the crying. Now I cry over every little thing. I go see the surgeons the first of May and hope that they put my mind at ease.

I have also looked for everything I could on the computer. But, this is the best website I have  found. This forum and the group of people here are the best and make you feel welcome and let you know that you are not alone in this fight.

Good luck and God Bless.

Patty
Diagnosed 1/09 1.6cm left side
5/09 2cm
hearing & balance problems
Surgery Date June 25, 2009 St. Mary's Hospital in Rochester, Mn
Surgery went great, can still hear!!!!

"This too shall come to pass and life will go on"

sgerrard

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Re: Just Diagnosed
« Reply #5 on: April 23, 2009, 10:38:45 pm »
Hi Tina,

I went to a different Dr. Chang, the one at Stanford who does Cyberknife. I also had a less than 1 cm left side AN with some hearing loss, tinnitus, and an occasional funky ear pressure episode. Judging by Patrick's experience with Dr. Chang in Houston, you would do well with either Dr. Chang. :)

I still have the same symptoms, somewhat milder thank goodness, but the AN is behind me now. It will be behind you one day too. Welcome to the forum.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

suboo73

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Re: Just Diagnosed
« Reply #6 on: April 24, 2009, 04:51:38 am »
Hi Tina!  Welcome to the Forum (but sorry you had to join the AN club...)
The folks here are wonderful, very knowledgeable, so keep reading!

You have time to make a decision, so get that facts.  Also, lots of us have taken other family members/friends to the doc visits so they can listen too.
This can really help.

My sister (Bigsister) and i are both here and both in W & W mode.
My AN is holding at 9-10mm after 2 MRIs 6 months apart.  Next one due in Dec. 09.
If i have to do treatment i am currently leaning towards CK, which is what Steve G. was talking about.

Take care and research, research, research!
My thoughts and prayers are with you and your family.

Sincerely,
Sue

suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

southpaw

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Re: Just Diagnosed
« Reply #7 on: April 24, 2009, 05:21:17 am »
Welcome Tina!

Sorry to hear (no pun intended) that you are newly diagnosed. I'm new here as well and so far I have to say that the people are great. Feel free to ask any questions.

Dave (a.k.a. Southpaw)
AN 3mm x 3mm x 2mm diagnosed March, 2009.
Symptomatic since June, 2006.
Currently in the watch & wait holding pattern.

nteeman

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Re: Just Diagnosed
« Reply #8 on: April 24, 2009, 06:10:55 am »
Hi Tina,

Sorry about your diagnosis but we have all gone through the same. I am just 3 months past surgery and doing really well. I hope the information you find here helps you get through the issues that confront you. Please do not hesitate to ask questions as there is much experience and information here.

Neal
Diagnosed 12/16/2008
AN 2.4 X 2.0 X 1.6 CM
surgery performed on 1/27/2009 Mt. Sinai Hospital, NYC
Dr.Bederson & Dr. Smouha
9:30am thru 5:50pm
http://www.facebook.com/neal.teeman

cjtender

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Re: Just Diagnosed
« Reply #9 on: April 24, 2009, 06:53:56 am »
There are alot of very nice peeps here and they will make you feel right at home....I was diagnosed about 6 weeks agoa nd my surgery is tuesday (3cmx2cm and only option)

Patty S
Patty  34 , RN ,  Dx with 3x2cm (plum grape) size AN on 3/6/2009 and ALL  removed-- retosigmoid on 4/28/09 with Selesnick/Gutin at SLoan Kettering in NYC

kathylittlejohncobb

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Re: Just Diagnosed
« Reply #10 on: April 24, 2009, 01:00:47 pm »
Hi Tina,
I also am sorry that you have become one of the AN club members.  BUT, as you have already seen, there are bunches of good people here, and they will all help you to get through your trials.
I was a House Institute/Ear Clinic patient in Los Angeles (from Louisiana), so do not know about your Dr. Chang, but I know that you will make the right decision for you as you research your options and meet with Dr. Chang.
Best wishes and prayers,
Kathy
Retrosigmoid at House/St. Vincent's in Los Angeles 4-4-06; partial hearing saved on AN side;
Dr. Marc Schwartz & Dr. Rick Friedman, my heroes!

Jim Scott

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Re: Just Diagnosed
« Reply #11 on: April 24, 2009, 01:43:01 pm »
Hello - and welcome, Tina ~

Of course like you, I wish you really didn't have a reason to be here (your AN diagnosis) but I'm glad you found us.  Because you have the same name as my wife, who I often refer to as 'the lovely and gracious Tina' (because she is definitely both) I took an immediate interest in your debut post.  Your Doctor Chang seems to be a very qualified surgeon and it appears as if you're in good hands there.  That is fortunate as not every neurosurgeon is really up to speed on AN removal.  However, due to your relatively tiny tumor, you'll likely want to consider irradiation to address it.  That will, no doubt, be part of your conversation when you consult with Dr. Chang.  Meanwhile, we're here to support, inform and generally encourage you as you deal with this situation that we've all been through (or are in the middle of).  We're not doctors and can't offer medical advice but we can give you lots of practical advice and suggestions as well as support you in any way possible as you deal with this benign, treatable but often problematic tumor.

Thanks for joining, posting and allowing us to welcome you, Tina.  I look forward to seeing more messages from you as the weeks roll by and you move forward with your treatment plan after your consultation with Dr. Chang.  Know that you are not alone with this and that many good folks will be rooting for you as well as praying for you in the weeks and months ahead. Our goal is to help you get through this - which you will, of course.  It's sometimes a hassle and certainly no fun but having friends who understand what you're dealing with can help.  That's what we try to do.  :)

Jim
« Last Edit: April 24, 2009, 04:31:59 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.