Newly diagnosed with AN

[Goldie]

Welcome, Brenda!  I too am not sure where you are in Wisconsin, but you might want to consider Mayo Clinic in Rochester, MN, for a close second opinion.  I had gamma knife 3-1/2 years ago there and now just also had my surgery there.  Dr. Michael Link was my neurosurgeon and Dr. Colin Driscoll my ENT.  They work as a team and I had excellent surgical results. 

In any case, I do think you need a second opinion, as your symptoms are very familiar to so many of us!  Please keep us posted on how things go for you, and I think you'll find this forum a great resource! 

Denise

[Jim Scott]

Hello and welcome, Brenda ~

I think that most of us can understand your feelings of frustration.  I had a fantastic neurosurgeon (and an excellent surgery outcome) but he is located in New Haven, Connecticut and not very convenient, even for someone willing to travel.  I'm sure you'll find a caring and competent doctor with AN experience - which is what you really need - much closer to home.  You've already received some excellent 'leads' and suggestions.    Meanwhile, consider these forums a resource and feel free to ask questions and post comments whenever you wish.  You're  a part of the 'family', now. 

Jim

[DR]

Brenda - sorry about your discovery, but it really is the "best case scenario."  Time is on your side so don't feel rushed to make a decision.  Best of luck and feel free to ask questions, make comments and, if necessary, to vent a little!

- Dennis

[leapyrtwins]

Hi Brenda -

welcome to the Forum; you'll find a lot of help and support here.

I'm in Illinois (outside of Chicago) and have an amazing neurotologist who treats ANs through surgery and radiation (Gamma Knife).  So, if you are interested in talking to a doc who can offer you both treatment options, has a great bedside manner, and really knows his "stuff" - let me know.

You can PM or email me through this forum.  You'll also find my name - and the names of others - on the WTT (willing to talk) list that the ANA will send you along with some informational literature on AN's (VERY helpful) if you just ask them.

Good luck,

Jan

[ombrerose4]

Hi Brenda, sorry about your diagnosis, but I think you will find this forum a very informative and friendly place. People here are so willing to help and support you, so feel free to share all your concerns. Good luck!

[Denise S]

Hi & Welcome to the site!

Yes, your tumor is smaller (like mine), But YES, can cause many of those symptoms based on where it is located exactly....just like previous posts have said.

For a start, maybe you could try find a NEUROTOLOGIST in Wi., otherwise a neurosurgeon who specializes in the skull/brain.   You may even be able to just get names from a local ENT.   

Be sure to utilize the SEARCH section above too!

Best wishes

[Kiwi Don]

Hi Brenda,
Welcome to the AN family, you will find a heap of caring folks with a heap of knowledge only too willing to aid and supportyou in your journey.
You will find that everybody has different symptoms at the start, many get to the serious stage without anyl, while some have them all
As has been mentioned before you have discovered yours early have time on your side to do the research and find somebody you will comfotable with.
Keep the chin up, and take a deep breath, we are all with you.
Regards

Don

[Sue]

Hi.  Welcome from me also!

Yeah, I think you need to see somebody well versed in AN's.  It's all about location, location, location.  Small AN's have proven to be quite a problem for some people.  Other people's AN's grow to big, fat things before they ever have any symptoms.  Mine was right in the middle.  Anyway, find a good doctor who knows what he is talking about who can give you well balanced information on all of your options!!  Best of luck to you.

Sue in Vancouver, USA

[Sobes]

Hello again everyone,

Just wanted to give an update:
I met with the ENT yesterday and it went better than I had expected. He did not make light of my symptoms and agreed that most of them are indeed from the tumor. When I asked him how many of these he sees he said "maybe 2 a year". He also told me that if any Dr told me to watch and wait that I should seek another opinion. He then proceeded to give us names of Doc's who treat patients with ANs often (3-5 days a week). He mentioned HEI and a few other renowned places and said if we don't want to travel that far that there are some great Doc's in the Milwaukee, WI area also. He wants me to see an oncologist here in Green Bay that does Gamma Knife to get the low-down on radiation treatments. I told him that I would really like to have this thing out of my head and he said that he would be happy to give me a referral to any of the Doc's who are experienced with AN surgery! Finally someone who gets it! Oh, and the hearing test showed no hearing loss!!!!! yaaaaaaaay!   
 
My hubby and I are both sick at the moment (he's even staying home from work which I haven't witnessed in 12 years) so I haven't been able to read all of your posts yet but am hoping to get the chance very soon. Thanks again for all the wonderful support and information here!! <3

Bren

[Jim Scott]

Bren ~

Thanks for the update.  I'm pleased to learn that your consult was productive.  I would certainly encourage you to seek out doctors who are well-experienced in AN surgery.  My neurosurgeon had been performing AN removal surgery for the better part of 30 years.  He was confident but compassionate and proved to be an excellent surgeon.  Radiation also requires a doctor experienced with acoustic neuroma treatment.  Such doctors are usually available and sometimes, their reputations proceed them, as happened in my case.  The news about your hearing being stable is wonderful!  

I'm sorry about the illness in your family and hope you and your husband can recover quickly and you can get on with your necessary research and planning for your 'assault' on your AN.  

Jim

[marsha G]

Brenda

My AN was 5mm when discovered.  It is now 6.5mm.  I have pains around my ear and back of my head.  I don't really have dizziness but there are times when I turn around quickly that I feel I have to reach out and grab something to be steady.  I also already have a 60% loss of hearing in my ear.  Just because it is small doesn't mean it is not messing with your world.

I agree with the other replies that you need to go to a specialist.   My OB/Gyn originally sent me to a local ENT after I did the same thing you did.....told him I was going crazy.  After my MRI and the diagnosis he immediately referred me to the Neurosensory Department of Baylor College of Medicine in Houston (Dr. Vrabec).  I live in Texas.  He said that he was not trained to handle an AN.

I am in the process of deciding whether I will have surgery or radiosurgery.  Unfortunately it will get more stressful for you before it gets better.  I did watch and wait for 6 months and just had a 2nd MRI, which showed my AN was growing.  I was on pins and needles the entire 6 months. 

Marsha

[wendysig]

Hi Bren

I'm glad to hear that you found someone who does get it and is wlling to offer guidance.  The decision makinig process on how to treat your AN is the most difficult part of this journey, in my opinion.  Get as many opinions as you need regarding surgery and radiosurgery to feel comfortable with your choice.  Once you've done that, it gets easier and you will probably feel more at peace with the situation.  Hang in there and keep us posted.

Best wishes,
Wendy

[jaylogs]

Hello Brenday, I wanted to welcome you to the forum as well. I hope you guys get over the flu soon, always not a good thing to fight .  I just wanted to echo everyone's comments and to trust your gut when it comes time to make a decision on what to do.  Also, I have found out it is possible to do TOO much research/reading about AN, so it's always a good thing to step away from the computer for a day or two. In your case, I wouldn't recommend getting a flu again just so you can stay off the computer!  
Jay