I'm really SCARED and CONFUSED !!

[sloxana]

I was just diagnosed with an AN 1.4cm and I must admit I'm really scared.  I went to the ENT doctor with my son to get a second opinion on having his tonsils removed and I happened to mention the fullness in my right ear to the doctor and asked could he "please give me a decongestant because I was flying in a few days."  He asked if I had any other symptoms and I said ,"well, now that you asked...I guess I do...." and I described a few dizzy spells I had recently.  He ordered a MRI and much to my amazement he told me I had a "tumor on my hearing nerve" and gave me the names of two doctors that specialize in this in the Nashville area.  I immediately got on the internet, found out the name for this, and scared myself silly!  I am now in a state of panic and don't know if what I have done so far is right or not.  I would love to hear from you as to your suggestions (and encouragment, too! )

This is what I've done so far:
1)  Got CD's of my MRI to take with me (or mail) as I seek opinions from various doctors.
2)  After reading this discussion board, I got in touch with the House Clinic and talked with Dr. de la Cruz.  I have mailed my MRI to him and I'm waiting for him to get back in touch with me after he reviews it.
3)  I've made appointments with the two doctors that my ENT recommended. My first one is Monday (just 4 more days!)

That's about it.  Like I said I'm scared and confused.  I have so many questions and I think some of them must sound kind of silly.  Like for instance, "what is the difference between a neurotologist and a neurosurgeon?" and "do I choose both of those or does the neurotologist pick the neurosurgeon?"
Thanks so much for reading this!

[krbonner]

First of all, nearly everyone has the same reaction as you when first diagnosed.  It's normal!  And it's okay.

Second, take a deep breath.  And another.  Now one more.  You will be okay.  Your AN is on the small-to-medium side, and you are not in any danger.  You have time to do a lot of research and figure out what you want to do and how you want to treat this.  There are three treatment options for ANs: watch-and-wait, radiation/radiosurgery, and microsurgery.  Each carries it's own risks and benefits.  You are the only one who can decide what's best for you in your situation.  A lot of doctors now wait six months and get another MRI to see what your AN's growth rate is, especially since yours seems smallish and you don't have a lot of severe symptoms.  Most ANs grow very slowly and do not need immediate treatment (the ones that do are usually 4+cm at the time of discovery).

ANA has a support group in Nashville.  You can get the contact info for it by contacting the ANA directly.  Other patients local to you may have more help about finding experienced doctors in your area (and ANs are rare enough that you really do want to look around to find a doctor that has seen hundreds of patients.  House certainly meets that criteria.) 

As for the type of doctor...  Most AN patients use a neurotologist (sometimes called a neuro-ENT).  This is a neurologist who specializes in the nerves of the head.  If you choose to have surgery to remove the AN, the neurotologist will work with a neurosurgeon (usually recommended by the neurotologist) to perform the surgery.  If you choose to watch-and-wait or have radiation treatment, you'd most likely never need to see a neurosurgeon. 

Right now, take the time to read however much you can handle.  And it's okay to take a step back and regroup.  And ask as many questions as you need to.  I certainly remember the panic setting in when I was first diagnosed, but it does get better.

Katie

[Sue]

Oh yeah, sloxana, we can all relate to scared, confused, panicked, and wanting to crawl in bed, assume the fetal position. turn the electric blanket up to 9 and not come out til the bad dream is over!!  Unfortunatly, the reality is we've all had to learn to deal with what has happened to us.  You are lucky your ENT found out your problem so quickly....many of us have been misdiagnosed or it has taken quite a long time to get diagnosed and then treatment. 

My doctor was a neurosurgeon but he loves working with the big machines  , so he helped to co-ordinate my treatment via Gamma Knife with Dr. Bader who is a radiation oncologist and who is on staff at Gamma Knife Center of Oregon. Gamma Knife is a machine that delivers the precise radiation beams to the tumor and that kills the darn thing.  There are other systems that basically do the same thing, just called something different....CyberKnife, Proton beam, Liniac.....etc.  It's a new world out there, medically speaking.....and often invasive surgery isn't necessary to accomplish the same thing...tumor death.  So...take another deep breath...and learn about your options.  We shall support you, no matter what  you choose to do.

You'll find a lot of answers to your questions here, and also some great people who are very happy to support you as you travel this unexpected journey you are about to take.  Know that many people have had this, gotten treatment, and went back to their lives fairly unscathed.  Don't let some of the bad experiences that you may read about on here upset you. As with any medical problem...there are people who have complications and not such wonderful results, but there are many more who go about their lives with only minor symptoms. The most common is some sort of hearing loss in the AN side, from minor to total, and it's only the lucky few who don't have tinnitus. 

I do welcome you to our exclusive club, although I'm sorry you had to join.  I wish you the best of luck with your eventual treatment and healing.


Sue in Vancouver WA USA

[kristin]

hi there. just wanted to let you know you're not alone. in fact...that's what we're here for. how fortunate you were that your son's ent was so quick to send you for an MRI! it might have been years before you were dx'd and by that time who knows how big your AN would be.

i'm sure you've read it elsewhere...but there is no big rush. take your time in making your decision.. i'm glad to see you've already contacted House...that's where i went and in my opinion, they're the best.

kristin in montana

[sloxana]

Thank you all so much.  It really does make me feel better to know that you all are out there and ready to help me if I need you.  In addition to worrying about possible long term effects for me, I'm also worried about how this is going to effect my children, especially my 10 yr old daughter that has special needs.  You know, things like...how long my recovery will be and who will care for her during that time, stuff like that.  My husband will help for sure, but she's pretty attached to me to help her with most things.
Anyway, thanks for listening.  I'm going to be okay. (taking a deep breath)....

[Mark]

Sloxana,

First, I would echo everyone else's comments that we all can very much relate to what you're going through as we all have been there, and have all made it through to the "other side".
 
Katie, Kristin and Sue have all made excellent points and offered some very sound advice. I would emphasize the point that AN's are slow growing and your's is on the small to medium side so all treatment options are open to you. At 1.4 cm, you have probably had the AN for 7-10 years already. A few more months to do some good research and get very comfortable with your treatment choice is very reasonable. Take the time to talk to doctors who specialize in AN's and in both radiation and surgery. There are many on the forum who have used House ear clinic for surgery and I would certainly agree they are one of the best for that specific treatment option. However, their bias is very clearly in that area and I do not believe they give very good information on radiosurgery. I would encourage you to look at other docs for good information on that option.

In addition to a lot of good information and personal experiences contained on this board's archives, I would also direct you to the Cyberknife patient support board at www.cyberknifesupport.org for a good resource on radiosurgery. There are several patient stories and a message board to pose questions to docs who volunteer their time.

Best wishes

Mark

[sloxana]

Thanks for that suggestion Mark.  I will definitely check out radiosurgery.  All of this is so new to me.  I'm trying to keep an open mind to all of my options.  Yes, I am glad that it seems there is no rush to do something about this.  If you think of anything else feel free to let me know.  I'll be checking this board daily!
Susan

[sgerrard]

Hi Sloxana,

  If you want to try something, click on that link that Mark posted. then click on the "About the Doctors" link at that site. The email addresses for Dr. Chang, at Stanford in CA, and Dr. Medbery in Oklahoma, are there. Once you have reviewed your MRI with the docs in Nashville, send an email to one of them with a brief description, and see if they reply. I would guess you might pick Dr. Medbery, since he is in Oklahoma and you are in Tennessee. I picked Dr. Chang, since I am in Oregon. I sent the email on Saturday afternoon at about 1:20. He replied at 1:40.   I can't tell you how good it feels to have a doctor reply to an email like that. Instant confidence that here is a doctor who understands and cares.
  One other note: I don't know if it should be a major factor in choosing a treatment, but the radiation process does not involve the long recovery time of surgery, so time away from your daughter would be much less of an issue.
  I have not yet made any decisions, but you might well guess that I am leaning in a certain direction...

Steve

[Omaschwannoma]

Hi Sloxana,

I had the same reactions as you as everyone here.  Glad you wrote and reached out.  I would also add to the great info above that you order the most recent AN information given at the July's Symposium where doctors specific to treating AN's held discusions.  There is new info on treating a tumor 2 cm or greater having greater chance of injuring the facial nerve.  Doctors from House were there and they have updated information regarding radiation therapy/recurrant tumors and surgery on radiated field.  Please look into this and continue to ask your questions.  Take a tape recorder or friend to your doctor meetings so you can absorb all information from them at a later date.  Please continue to reach out on this forum letting us know how your journey is going. 

[Patch]

   HI THERE


       YOU ARE NOT ALONE ON HOW YOU FEEL. I WAS TOLD IN MAY THAT I HAD A 1.2 CM AN. WELL, LETS START FROM THE BEGINNING.

I WAS ON MY WAY TO WORK ON A NICE MARCH DAY AND FELT ALITTLE FUNNY WHEN I WAS LEAVING. I MADE AN APPT TO SEE DR WHO ADVISED THAT I HAD VERTIGO. I WAITING ANOTHER WEEK, NOT IMPROVEMENT. I WENT BACK TO DR AND HE REFERED ME TO AN ENT FOR TEST. ALL CAME BACK GOOD. I WENT BACK TO THE DR AND I WAS TOLD, GIVE IT TIME, YOUR SYMPTOMS WILL GO AWAY. ABOUT ANOTHER WEEK WENT BY, AND I DECIDED TO SEE ANOTHER DR. HE SCHEDULED A MRI AND BOOM, THERE IT WAS (AN) I'M GLAD I SOUGHT A 2ND OPINION.

     BUT ,WHEN I WAS TOLD HAD HAD A AN, I BROKE DOWN AND CRIED. MANY THOUGHT WENT THRU MY HEAD INCLUDING HOW MUCH LONGER DO I HAVE TO LIVE.  SO I WENT AND SAW A NEUROLOGIST WHO EXPLAINED THAT THIS IS CORRECTABLE AND CURABLE AND THAT I WILL LIVE A LONG AND HEALTHY LIFE AND THAT THE AN WAS SMALL, THAT I WOULD BE A GOOD CANDIDATE FOR RADIATION THERAPY.

     I WENT A RADIATION DR WHO PUT A TREATMENT PPAN IN PLACE. I WOULD HAVE 6 LOSE DOSE TREATMENTS ( 3 A WEEK ) FOR 2 WEEKS. EACH TREATMENTS WAS NO MORE THAN 10 MINUTES. I FINISHED LAST FRIDAY AND HAVE A FOLLOW UP VISIT IN OCT AND A MRI IN DEC OR JAN AND HOPE TO SEE SOME POSITIVE RESULTS.

    SINCE TALKIG TO PEOPLE HE, ITS HAS REALLY HELPED ME, SO HANG IN THERE, YOU WILL DO GREAT.

MARK

[agnes]

HI, YOU DEFINATELY ARE NOT ALONE WITH YOUR FEELINGS. THERE ARE MANY OF US EXPERIENCING THE SAME THING, SO WHEN YOU NEED TO VENT, DO SO. THAT IS PART OF WHAT THIS FORUM IS FOR.  RESEARCH......THAT IS THE KEY TO KNOWLEDGE.  WE WILL ALL GET THROUGH THIS WITH MUCH SUPPORT.  I JUST WANTED TO GIVE SOME ENCOURAGEMENT WITH WORDS AND HOPEFULLY THIS WILL HELP. 
AGNES   

[sloxana]

Thanks everyone for making me feel better.  I did not want to become a member of the "AN club" but here I am anyway.  And you know what?...I have decided this will not consume me and become the most important thing in my life.  I still have so much to do and be thankful for.  My sweet kids and wonderful husband for one thing.  But it sure is terrifying thing when you are first diagnosed.  Thanks for being here for me.  I don't know how this journey will end but I'm glad you all are there!

Susan