Newbie- 31 years old, just diagnosed 10/15

[lori67]

Good luck with the MRI!

And WELCOME TO LIZ!   

Lori

[ombrerose4]

Welcome to the group!. I think you will find lots of support, encouragement and information from the wonderrful people on this forum. Know that you are not alone and when you have questions or concerns or just need some cheering up we are here for you.  Good luck.

[msmaggie]

Lyn
You have fetched up in the best possible place to be right now in your situation!  You can ask questions, cry, ponder, whine, and anything else that seems to fit the moment you are in.  People here have been through what you are facing and have come out on the other side with a new perspective.  Life will be different in some way.  For some, it is a lot different, and others have been a little less affected.
Do your homework first.  Read, study, ask a million questions.  I sent my MRI to anyone and everyone until I seemed to get a consensus on the diagnosis.  Then I made my decision. 

Yes  it is a shock to hear the words "brain tumor."  I still marvel that I have had brain surgery!  It was the last thing I expected my ENT to say.  After falling apart, I got busy and lived on the internet. And then I found all these wonderful people to hold my hand and cheer me on. Keep us posted on your progress.  We can help support you on your journey.

Priscilla

[lawmama]

The MRI with contrast was. . . interesting.  They had to stick me twice to get a vein, but that is normal for me.  I'm a tough stick.    

I told the tech that I was there to get a better look at an acoustic neuroma, and then when he stopped to inject the contrast I asked him if he could see it.  At that point he was vague.  However, as he was walking me out he smiled and said, "I saw it." 

So, now I'm pretty sure that there is at least something there (not that I wasn't before, it was pretty clear there was something there on the first MRI).  I go see Dr. Antonelli on Wednesday and I'm anxious to see the MRI at his office and hear what he has to say.

Otherwise, I think I'm emotionally processing this very well!  I'm feeling very blessed that this is very, very likely benign and that modern medicine is so advanced.   

[Jim Scott]

Lyn ~

Congratulations on getting through the MRI scanning procedure, often referred to here as the 'Tube O' Doom'.  As you noted, acoustic neuromas are almost always benign and with modern technology, they can be addressed successfully by irradiation or surgery.  Many of our post-op members are participating in fairly strenuous physical activities (i.e. half-marathons) within weeks and months of their surgery or radiation treatment.  I'm certain Dr. Antonelli will provide you with all the information you'll need to consider how to proceed.  Wishing you a good consult - and please let us know the results.  Thanks.

Jim

[petgroomer]

Welcome Lawmama 
I have read this entire thread and no matter how many threads I read, I always learn something different!  This group is great!!
You have changed from scared and alone to being confident with much support.  That is a healing in itself.  I too was like you and I read and read and educate myself using this board, it is very invaluable.
Keep your humour going and your chin up!  My bit of humour is that I tell my family it is just a giant HAIRBALL stuck in my throat from years of dog grooming.  I also am going to have a "name my tumour" time.  AND, last but not least, I did post this to another section on the ana but I have to put it here... it is both humorous and realistic at the same time.  What we all go through when we are first dealt the tumour card.  http://www.digyourowngrave.com/the-five-stages-of-a-giraffe-in-quicksand/  (has some bleeped out words...   )
You did ask about doctors and I wanted to also mention a Dr. and give you his stats from his website.
Dr. Fukushima -
**Acoustic neuromas - 1200 cases, excellent Facial Nerve preservation (98% success) and hearing preservation (70-80% success).
**Specializes in pathology of Cranial Nerves, over 6000 cases.
**Skull Base Tumors over 4500 operated cases
www.carolinaneuroscience.com
Now, some of these stats may be over lapping eachother and stats can make someone look great. 
There are many doctors out there, such as Dr. Friedman also.  I have heard many many great things about him also.  With so many people you have contact with now, you will have your choice of Dr.'s to attend and find which you feel comfy with.

I will keep an on eye this thread so please keep us posted as we all learn from eachother
Rhonda

[b91221b]

Hi, Lyn...I, too, am a newbie (still finding my way around the forum...trying not to make posting mistakes    )...and live near Tampa.  I did enormous amounts of research upon diagnosis in May /09..and vascillated back and forth between W & W, conventional surgery and stereotactic radiosurgery.  My neuro is an excellent surgeon, and believed he could remove it safely.  However, at my age (70+), I was not "shot up" at the thought of invasive surgery.  My AN is 1.4 x .09.  I just completed 3 days of CK treatments in Tampa, and I'm trusting that they "did their thing".  You are absolutely right to do as much research as possible.  I was on the computer every day checking every site I could find, and searching for as much information as I could glean.  When it was all said and done...I made the decision that was right for me...and I think that's the key...what is right for YOU.  My biggest regret is that I didn't join the forum prior to my treatments.  But I'm so happy to be here NOW.  I wish you the very best, and my thoughts and prayers are with you.

Barbara

[leapyrtwins]

Barbara -

not sure if I've welcomed you to the forum yet or not, but if not, welcome 

I'm glad you found us.  I, too, didn't discover the ANA until my treatment (surgery in my case) was over.

CK is a great choice for those who don't want surgery and I'm glad you just completed your treatments.

I'll keep my fingers crossed that your AN dies very soon.

Best,

Jan
 

[CHD63]

Barbara .....

Welcome to the Forum!  I have to join the ranks of those who did know about the Forum until after my surgery.  However, it has been a wonderful source of support ever since.  Only those of us on here can really understand the whole process ...... shock with the diagnosis, treatment options, treatments, initial recovery, long-term effects, etc., etc.  You have come to the right place.

Clarice

[b91221b]

Clarice & Jan....thank you so much for your kind thoughts!  SOOO very encouraging to a "newbie"!

Barbara

[lawmama]

Hi Barbara!

I can certainly relate to your research experiences.  I feel like I have already read everything ever written about AN's...twice!  Still, I've found that what everyone on here told me from the start is true:  there is no "right" answer, only what is right for me.  I'm glad you found what was right for you, too!

Pleasure to meet you and I am very glad you are here now.

Lyn

[pjb]

Welcome you are so lucky you found this site before you make any decisions I wished I had I found this site before but am still very lucky to have found this wonderful group of people post-op.  I had the same size AN and was very lucky I did not have any facial paralysis just a simple feeling of numbness that no one can even tell.  I did lose some hearing but your chances are very good when diagnosed with a small AN and it is slow growing tumor but the sooner a decision is made I believe your chances are better than when it becomes much larger... Good Luck with whatever choice you make..

[wendysig]

Welcome to the family, Lyn!

It's completely normal to feel alone and scared at this point - you're probably still feeling scared, but now you're not alone.   

As someone who has had facial paralysis since my surgery 2 1/2 years ago, I can tell you that it's definitely not a career ender.  Of course, at the moment, I'm a stay at home mom to my little ones, but once the youngest is in school full time, I plan to go back to work (I'm a nurse and a PT).  I don't think my facial issues will affect my ability to do either of these jobs.  I really think the only difficulty would come from being self-conscious, but I have actually gotten over most of that already. 

I volunteer at the school library and also doing budget counseling for military service members as well as other community activities, so I am face to face with people I don't know all the time.  No one has treated me any differently.

I will mention that your AN is relatively small, so you may be jumping the gun a bit.  It's probably a good idea to get all your treatment options first.  You may not even have to deal with any facial paralysis problems and you may not lose your hearing. 

Take a deep breath, talk to your doctors about your concerns and get as many medical opinions as you need until you feel comfortable.  You'll get through this!

Lori

Hi Barbara,



Welcome to the forum.  Although the AN diagnosis is enough to scare anyone, please know that you are not alone.  I think you'll find the people in our group to be knowledgable and compasstionate and caring.  We are here to help however we can so ask any questions and feel free to vent when necessary.

As Lori said, having an AN doesn't automatically mean you will have facial issues or lose your hearing.  The damage your AN causes (or doesn't cause) depend on size, location and whether your AN is sticky.  My AN was not at all sticky and although I had some minor eye issues after surgery, they resolved in less than a month.   My only rlasting  problems have been losing my hearing on my right side, which my BAHA (bone anchored hearing aid) has been a huge help with, and minor balance issues that don't seem to want to go away.  All in all, I count myself very fortunate.  I hope you will be at least as fortunate or even better off than me.

Wendy

[AMD]

Hi Lyn,

Jumping in late as well.....  I was 29 when I was diagnosed.  Like you, I had a very small son (18 months at time of surgery) and had been an RN for 9 years.  I work in open heart surgery and kept thinking of all the what-ifs and how it would affect my profession.  For me, I finally had to come to terms with the fact that I had the tumor, and it wasn't going anywhere. My hearing was shot in the left, and my balance was OK, but a little off.  I knew that, for me, getting surgery was my best option before something worse happened. 

This forum is a wonderful place.  It is full with people who understand exactly what you are going through, and things you will still experience.  We've all had many different treatment approches, and outcomes, but we are all here as a support group for whatever path you choose for yourself.

Best of luck with your upcoming surgery and wishes for a speedy recovery.

-Amy