Newly Diagnosed

[Glenda]

   Hi All,  I was just diagnosed last week and had never heard of AN before.  Had been treated for a sinus infection that would not get better.  Family doc sent me to ENT for diagnosis, had tinnitus, fullness and some pain.  After MRI my ENT gave the results of a 5mm AN.  He has set up an appointment with a specialist on 2/19.  I have researched this Dr and found that he has an excellent resume with a years training at the House Institute.  He is also on the Best Doctors List. To say the least I am scared, and after reading posts on this website, it seems there are alot of problems that I had no idea could be associated with AN.  I am having neck pain (popping noises in my neck) and headaches in the back of my head.  I'm not sure if these are results of AN or not.  I had thought may be stress.  I have noticed weakness on the right side of my face and eye (that is the AN side).  I do have dry eyes already but it does seem as though the right side is worse.  I just have so many questions and concerns.  I am so happy to have found this site where there are others who are going through the same thing.  I think I am rambling but just have so many questions at this point.  Thanks in advance for your advice!

[Joef]

Welcome! sorry you ended up here !

yepper.. a lot of those problems could be AN related... I had headaches and neck issues for years.. and never reallized the were AN headaches...

5mm is tiny!!! you will have lots of choices... and lots of time.. no need to rush into anything.. a "House" trained doctor is a good place to start...
(note: I went to House) continue your research .. get other opinoins.. CK, GK, watch and Wait..

Take a Deeep breath ... you will... (and we are proof!) get though this... the first stage (and we all have gone though it) is Panic!

So what State do you Live? I'm CT here....

[leapyrtwins]

Glenda -

hi and welcome.  I'm so glad you found this site, it will prove invaluable in the journey ahead of you.

As Joef said, your AN is very small, so you have plenty of time to decide on your course of treatment.

Being diagnosed with an AN is scary, but as you educate yourself, hopefully some of that fear will go away.  It sounds like you have been referred to a great doctor who has lots of experience in ANs, which is definitely something in your favor.

If you haven't already, I encourage you to contact the ANA and request some of their literature; they have some very helpful brochures.

Best of luck to you,

Jan
   

[lori67]

Hi Glenda and welcome.

You are off to a good start on this journey by educating yourself.  It seems like you are in a good position to take your time and do the research so you can decide what works best for you.  As Joef said, we all got through this and so will you!  It just seems scary now.  Before long, you will be discussing AN's over a cup of coffee just like it was a normal, everyday thing!

And I too, was being treated for a "sinus" headache and infection - for 15 years.  Now that's one heck of a sinus infection, if you ask me! 

Good luck on your search!
Lori

[Jim Scott]

Hi, Glenda:

I'm sorry you've been diagnosed with an acoustic nueroma tumor but pleased that you've found this website and forum. 

At just under an inch, your AN is, indeed, tiny and that is good news.  It means that you have options.  Of course, options also dictate choices to be made but fortunately, you have the time to make them with knowledge and after the initial shock of your AN diagnosis passes, as it will.  The ANA has lots of information to offer and of course, these forums are open to any questions we can answer as non-physicians with practical experience in dealing with an acoustic nueroma.  It can be a minefield but we've all 'been there' and we've all made it through, albeit not always easily.  No AN case is exactly the same and one patient's good or not-so-good experience should not determine your attitude about treating this condition.   Read, learn, ask and use that acquired knowledge to make informed decisions regarding how you'll address the AN.  You have time, but it isn't infinite, so don't waste it worrying or allowing anxiety to overwhelm you.  An acoustic neuroma tumor is almost always benign - and treatable.  While there are risks in any medical procedure the sooner you can attack the AN (most likely with radiation but possibly surgery, if you choose it) the better your ultimate outcome should be. 

We all wish you a good outcome as you begin your 'AN journey'.  As AN 'survivors', we're here if and when you need us and we care what happens to you, Glenda.  Please stay connected.   

Jim

[Glenda]

Thank you all so much for the warm welcome.  I am, I think, still in shock from the news.  I'm glad to realize that my AN is tiny.  I had felt as though I would have to have something done soon, but it's nice to know I will have time to digest this info and learn more before I have to make any decisions. 

I am from South Carolina and the doctor I am referred to is Dr Paul Lambert at MUSC in Charleston SC.  I will do some research and get the opinion of the doctor and go from there.  I'm sure I will have lots of questions for you all

Thank you ALL for your posts and for being there for me!
Glenda

[pearchica]

Hey Glenda- welcome to the club . Having said that the worst time is when you are first diagnosed. I was diagnosed right before Christmas last year and yeah, I just thought I had bad sinuses too! You do have time to sit back and think about what you want.  I know a lot of my side effects that I blamed on the AN have subsided and now I think they are more stress related.  Be prepared to get conflicting opinions. I had 4 opinions total: first one was to debulk via translab surgery, then radiate with gamma knife, second one said to do translab, no radiation.  Third one said retro sigmoid, no radiation, fourth one said radiation only.  I had about 6 months to make up my mind, but I have a 2.5 CM so I really did need to do something about it.  In your case you are the lucky one (or not so lucky, depending on the point of view).  You have the opportunity to watch and wait, which is a very valid option, but one I hugely admire!  I'm not sure I would be a good watch and waiter so that's why I kinda of feel fortunate that I had to deal with my AN sooner rather than later. I opted for #4 CK radiation, but I was very adverse to surgery from day one.  After opinion number 3, I scheduled surgery only to do a gut check and go back to the AN website and have people tell me to go for it, get a fourth opinion. I am glad I did.  So if you opt for surgery that's great too, just know that there is a surgery bias to this field and I would think radiation for your size would be a great option... Take care of yourself- Annie

[Glenda]

Hey Annie,
Thanks for sharing your experiences.  I have some questions for you if you don't mind.....   How did you go about getting the opinions and from who did you get them?  I have an appt with an ENT surgeon.  I have checked out his credentials and he did a fellowship with the House Clinic which I thought sounded very good.  After that I really don't know where to turn.  Did you actually see others for an opinion or did you consult via email or some other way?  I know my AN is small but I don't know how good I will be at watching and waiting.  I really want it gone....My daughter just found out she is pregnant though so I think I would rather wait until after the baby is born to have anything done.  How long do they usually wait to do another MRI?  I hope mine does not turn out to be a fast growing one.  It seems from the posts I have read that problems are lessened when something is done early while the AN is small.  My tinnitus is already pretty bad.  I sleep with an air filter humming to drown out the head noise.  Sometimes it is worse than other times but it never goes away.  Fullness and occasional pain are also symptoms.  Also, does insurance usually cover the surgery if you opt to travel to have it done?  I really have very good insurance with my job. 
I hope I haven't ask too many questions....  I'm just really overwhelmed at this point.   I'm really tired so hope I am making sense.   I'm going to sign off and go to bed.  Thank you again!
Glenda

[cookiesecond]

Hi Glenda and welcome,
This group offers lots of support and a wealth on knowledge. I know it really helped me and I continue to enjoy the comments and compassion shown here.
I am also from SC. I was referred to Duke and had the translab approach 8-2-05. I had a great team. Dr. Cunningham, Dr. McElveen and Dr. Fukushima. The tumor was 2+ cm and I had already lost most of my hearing on the An side. They removed all of the tumor and I did not have ay facial issues.I did battle with nausea and dizziness before and after surgery. My balance has gotten better and I rarely experience nausea.I will llft you in prayer as you decide the course of treatment and as you continue in your AN journey.
Take care and God bless,
Lynn

[Glenda]

Hi Lynn,

Thanks so much for sharing your experiences with me.  I am so glad you are doing so well and I pray I will do as well.  It is so nice to hear from others in SC.  Do you attend the support group meetings?  I am checking into those and am looking forward to be able to actually meet and talk to someone who has experiences.  I am reading alot of posts here and feel like I am getting to know many of the regulars...It is such a blessing for all of you to give of your time and support those of us who are newbies...It helps so much to not feel you are alone.   God Bless you all!!!

[LADavid]

Hi Glenda
Welcome.  I'm a new member too.  It took me two months post-surgery to find my way here, but now that I have I feel very confident with such a great support group.  I am not as experienced it the methods of surgery.  I had a translab in the beginning of December and my issues are mainly post-operative.  I can tell you this from recent experience (AN diagnosed in September 2007), the thought of tumor surgery was devastating.  In retrospect, my surgery was a piece of cake.  It was perfomed by Dr Slatery of the House Clinic and St Josephs Hospital here in Los Angeles.  It was a good experience as surgeries go.  As you will see on this board, post-op is the issue.  Since your AN is small (there have been some monsters on this board), you may want to consider having it monitored -- regular MRIs.  Unless of course you are feeling the effects of it now.  In any case, read the post-op posts on this board to know what you can realistically expect.  You found a good place here and a lot of good understanding people you can turn to.  I did, and I am very thankful I found them.
David

[ppearl214]

Hi Glenda and welcome.  I LOVE the name Glenda... I'm kinda of a "Wizard of Oz" buff and LOVED her dress and magic wand.... I wish I had a magic wand to wave over you so that you don't have to endure this new journey, but.... I can share that, as you can see, this site is filled with folks that truly do care (yep, our AN munchkins!   ) 

So much to learn, I know that you may endure info overload.... as there is much to research... esp. since your AN is extremely tiny.  I can only offer a shoulder, a good ear, a thought, an input, an Inbox.... or a bad joke or watered down drink..... but, either way, I did want to extend a hello. If you need help navigating the website or whatever.... just let us know... glad to help.

BTW, no flying monkeys on this site   And if anyone tries to call me Miss Gulch....

Again, welcome!  glad you found us.....
Phyl

[Glenda]

Thank you for the welcome Phyl!  It has been a bad day for me, (think I've read so much I'm in Overload status), so I really needed that chuckle you provided 
I've been spending alot of time on this site and I've been waiting for you. I now feel like I'm an official participant 

By the way I also love the "Wizard of Oz"!!  The munchkins are my favorites so I'm so happy to have found all of you (AN munchkins) and I'm so glad those pesky flying monkeys are not here. 

From what I know of Miss Gulch, she has absolutely NO personality so there is no way anyone could confuse the two of you

Thanks once again to ALL of you!

As you say Phyl, many huggles to you all for being there for all of us newbies!!!

[ppearl214]

*kicks dust particle on floor* 

Aw, shucks Glenda... just doin' my job

Glad you found us... and before you know it, once the info overload has calmed down... and decisions are made (once it's time to be made).... you'll be singing "Ding, Dong, the AN Witch is dead".... not referencing moi, of course... that dang brain booger (as I like to call it) in yer head!

Hang in there Glenda... and yes, you too are an official AN participant!  Glad to have you here.  Huggles back!

Phyl, not to be confused with Miss Gulch

[neal r. lyons]

Hi Glenda and welcome to the forum!

I  thought I should clarify the size of a 5mm tumor.  It's much much smaller than 1 inch.

By definition there are 25.4 millimeters in 1 inch.

So yours is only 1/5 of an inch.

Your going to be able to take care of that little bugger!

Best wishes-Neal