Just diagnosed with AN

[CS]

Hello Everyone,

I an 39 yrs old and was just diagnosed with AN the size of 12mm x 0.7mm x 0.6mm.... still fighting with the emotional ups and downs.

Would love to hear from someone who treated around the same size with different treatment options.  Thanks.

[v357139]

Sorry for your troubles and welcome.  I had 3.5cm so I did not have your choices.  At that size you might have all 3 options - 1) wait and watch, 2) types of radiosurgery, 3) regular surgery.  ANA lists and explains these options, so reading that is a good way to get educated.  Wait and watch is for those where it is not growing, and not causing any problems.  You would get a second MRI in maybe six months after the first to see if there is any growth.  The most important thing is to see very experienced doctors with great track records in surgery or radiation.  They sometimes favor one over the other.  Let us know how it goes.

[CS]

Hi v357139,

Thank you for your reply-

I started tingling sensation on my face, so I am anxious to see doctors... One doctor cannot see me until mid July.
I am collecting as much as information possible and am grateful that I was able to go to the local support group meeting last weekend and met some folks.

[LakeErie]

Immediately after diagnosis is usually the worst part of the process. As we learn more about AN's and hear about the successful outcomes for many other people, it gets easier. In my own case, I actually was calmer the closer I got to my surgery date. I knew more, I had decided on my best treatment option, and had confidence in my surgeon. I was ready to get it over with.
I too had tingling in my face as one symptom of my tumor, and that is relatively common. The tingling continued after surgery, but has improved greatly after two and a half years. It is now sporadic when I feel it at all. Good luck.

[robertwh2]

My prayers are with you!

As you read this site and others you will see great results and horror stories. This was the hardest part for me. What you need to know as you read them is that each person WILL have a different experience. What happened for one person will not dictate your results.

Get as much information as you can and see a Doctor who has lots of experience specifically with AN. Get a second opinion and even a third if you are unsure.  You are the decision maker not the doctor. 

With the size of your tumor you have time so don't rush it. Read lots ask questions and make the best educated choice for you. 

Robert

[CS]

Hi LakeErie,

Thanks for your reply-

Yes, the first week was panic and depressed. I went to join the support group last week which was a big encouragement.
To scheduled with Neurosurgeons is hard as I have to get referral and approval and many doctors are gone for summer vacation...  I am trying to stay positive and keep moving forward!  What surgery did you have?

[CS]

Hi Robert,

Thanks for your reply and advice.

I am blessed to access many information, but I am overwhelmed with different opinions, experience, success and horror stories....  You are absolutely correct- I am realizing that each person has own tumor that is not identical to anyone so each person will have a different experience and result that no one knows.  This gave me some sort of relief and comfort.

[v357139]

Yes its a journey.  And each of our journeys is different.  But there are commonalities also.  Picking an experienced surgeon with a great track record will give you the best chance of the great results.  That is a common thing many on this forum have attested to.

[TexasSprinter]

Sorry to hear about the diagnosis. I had 11 x 10 x 17mm AN and opted for surgery. Lost hearing in right ear but otherwise no lasting complications other than headaches, which seem to be getting less frequent. Tough process to pick a treatment but whatever you select will be the right choice for you.

[CS]

Hi v357139,

Thanks for the good reminder...Commonalities.  Picking an experienced surgeon with a great track records is very important.  I just went to see a neurosurgeon who my medical group and Insurance company rushed me to scheduled.... I definitely don't want the doctor to operate me.

[CS]

Hi TexasSprinter,

Did you have Translab?  One of doctor who consulted me via phone recommends Translab because my hearing test shows that I have no useful hearing left....but I still want to believe that I have some hearing left so I don't want to destroy the inner ear...

[v357139]

I also had translab.  I was fixated on saving my hearing for months.  But they all told me my chances of saving hearing were tiny.  I have to say I barely miss hearing in that ear.  There is no difference in a quiet room talking to someone.  Only in a noisy room, then its hard to hear just the person who is talking to me.  And there is some issue with being able to tell which direction sound is coming from.  But for me at least, these things are so, so minor.  It is an inconvenience only, that's it.

If the other issues are taken care of, hearing became very low on the scale, at least for me.

[v357139]

You can always see a few experience surgeons, to see if anyone gives you a chance of saving hearing.  If they all say the same, then at least you know you gave it your best shot.

[CS]

Hi v357139,

Thanks for your insights-

I'll be seeing five different doctors starting next week throughout July and eventually decide a treatment option.
From the hearing test, my hearing is almost non-serviceable...but I want to believe the word my ENT doctor told me that my hearing got lost suddenly so it may be coming back.

[v357139]

Best of luck and keep us posted.