Newly diagnosed mom of 2

[jacki1120]

Hello Everyone!
 My name is Jacki. I'm 29 years old and I was just diagnosed with this wonderful surprise of an Acoustic neuroma.  What a way to ring in the new year huh? I had an Mri last Friday. The left side of my face has been numb for several months.  I wouldn't call myself dizzy, more on the clumsy side.  I tend to fall over my own feet or trip as if the ground were uneven. Oh yes then there's the constant banging into just about anything in my path.  Anyways, I was just getting the mri to rule out multiple sclerosis. I left the Mri @12:30pm and already got a phone call from my pcp@ 1:15. Informing Me of what they found. A 3.0cm x3.5cm transverse x3.0cm craniocaudal.
 Naturally, I'm petrified.  It's been almost a week and they have already scheduled me with the specialist in Boston for this upcoming Monday. 
I've been reading as much as I can but I get lost in my own thoughts. From what I gather this is on the large side. So what are my options?  Realistically, the watch and wait method is out. So now what? Please help..thank you in advance for any info you may be able to help me with.

Jacki

[CHD63]

Hi Jacki and welcome to this forum of new caring, supportive friends .....

It is perfectly normal to be petrified to be learning you have an acoustic neuroma.  Try to take a deep breath and do not be in a huge hurry to make a decision, although at 3.0+ cm you most likely do need to seek treatment fairly soon.

When you go to the specialist in Boston, print out the questions from the anausa.org website and take them with you.  See:  https://www.anausa.org/pretreatment/questions-for-your-physician

This is one time you want a doctor who has much experience in treating specifically acoustic neuromas.

If you have specific concerns, that is what we, here on the forum share with each other.  We are not doctors, but we have much collective experience in dealing with our acoustic neuromas.

Many thoughts and prayers as you walk through this decision-making phase.

Clarice

[jacki1120]

Thank you very much.

[ANGuy]

Clarice can give you better advice than I can.  All I can do is give you some moral support and tell you that all of this will get easier to process.  It will become less scary.  On some levels it is scary business.  On others, it actually isn't as bad as it could be compared to many other afflictions.

Also, in this world of modern medicine, and with you being in one of the most advanced regions in the world in terms of medicine, you in a good position. 

I think your only decisions will involve WHO is going to treat you, what pathway they will use to do the excision, and when.  You might have the time to wait until school is out, or until it is back in, or until you family's schedule is better lined up for you being on the mend.

[michellef08]

Hi Jacki,
I was 27 when I was diagnosed with my tumor, and had it removed! I am now (almost) 2 years post-op. Because of my young age, every specialist I saw recommended surgery, but then it's a matter of which approach you are comfortable with, and what doctors have the most experience.

Have you sent your MRI to House in LA? They do free phone consultations, https://www.houseclinic.com/consultation/acousticneuroma
It is where I had my tumor removed with Dr. Schwartz and Dr. Friedman (who has since moved to USC). They were beyond amazing! They removed my entire tumor (small in size - 1 cm), saved my hearing, and I had no facial or balance issues whatsoever!

My advice is see as many specialists as you can, and do as much research as you can until you come to a decision that feels right for you. The good thing about this tumor is that is grows slowly, so you have time to research your options. Let me know if you have other questions, I am happy to share my story!

~Michelle

[jacki1120]

Thank you very much. I don't have a copy of my Mri my pcp does and now so does the neuro oncologist at Beth Israel in Boston. Idk how much time i have before I have to make a decision on what I want to do because of the size and the urgency my doctor is putting on it.