How do I keep from crying???

[Jackie]

I was just diagnosed Feb. 5th, like other newbies, I am in shock and have a lot to learn and am glad to have found this forum!!! My AN is right side , exact quote from diagnosis " right cerebellopontine angle isointense T2 mass extending into right internal auditory canal. Mass likely impinges upon the exiting right 8th cranial nerve. 11 mm transverse x9 mm AP. This is Greek language to me since I have so much to learn and explore. I live in Oregon and am on LKaiser, however they do Not do any procedures within Kaiser, but refer out. So help me please with whatever suggestions anyone out ther has. I am a happily married 59 yr old young Grandma of 5 and want to be positive about the future and end this pity party soon! Thank-you for any help you can give me. Jackie

[Joef]

Welcome !

  and relex .. breath deeply ... everyone goes thu this "panic" stage!!      Take your time and reasearch your options.. these tumors are normally slow growing (I bet your "friend" has been there for years) so another few months should make no difference.. your in no rush to do anything!  it still at a smallish size, so you could just watch it and wait, surgery, or radiosurgery!...

[ppearl214]

Hi Jackie and welcome.... and JoeF is right... just time for a deep breath.... we all truly do understand and here to support each other as best as we can.

Ok, I'll attempt the garbly translation for you.  Anyone else want to chime in, please do.....
"right cerebellopontine angle isointense T2 mass extending into right internal auditory canal."
This means the AN is indeed on your right side, in the IAC, just peeking out to the CP Angle region..... so, it's peeking out but based on what is noted, not pressing on the brain stem, which is terrific

The 8th Cranial nerve is your vestibular/hearing (and balance) nerve, so, thus, an "acoustic" neuroma


"11 mm transverse x9 mm AP"
Ah, great news!  it's considered small to medium, thus, highly treatable and worth keeping an eye on.  11mm = 1.1cm.

Now, the most note-worthy is this.... Acoustic Neuromas (AN's) are benign.  Benign is a lovely word... truly.  Also, it does not penetrate the brain itself.  It may be pressing on it (MAY is the key word) but does not penetrate the brain.

So, overall... it's small to medium, highly treatable, may be worth keeping an eye to make sure there is no further growth.  If you are having any symptoms such as balance issues, tinnitus, facial numbness, etc, these are the things you want to make sure you not to your dr.

There is much info out here so my hope is that you sit back with a cup of coffee (or your favorite drink), take a deep breath and read some of the info that is available out here.  And please keep in mind that we all truly do understand. Many here are like you... just receiving their diagnosis, some that just had treatments for their AN's and some that had treatments a while ago and as you will see, life is certainly moving along for us......

Again, welcome....... and know that we stand beside you and will help in any way we can.

Hang in there.
Phyl

I was just diagnosed Feb. 5th, like other newbies, I am in shock and have a lot to learn and am glad to have found this forum!!! My AN is right side , exact quote from diagnosis " right cerebellopontine angle isointense T2 mass extending into right internal auditory canal. Mass likely impinges upon the exiting right 8th cranial nerve. 11 mm transverse x9 mm AP. This is Greek language to me since I have so much to learn and explore. I live in Oregon and am on LKaiser, however they do Not do any procedures within Kaiser, but refer out. So help me please with whatever suggestions anyone out ther has. I am a happily married 59 yr old young Grandma of 5 and want to be positive about the future and end this pity party soon! Thank-you for any help you can give me. Jackie

[matti]

Hi Jackie and welcome!  I know how scared and anxious you are feeling, but as Joef and Phyl have noted these AN buggers are treatable and benign. We are here to help guide and support you through this journey. Your first steps are researching and gathering info, this is a great place to start. It's nice to be armed with as much info as possible when meeting with your doctors and surgeons. I didn't have the opportunity to do that

I am almost 9 years post op and life is wonderful!!!

Sending hugs and keeping you in my thoughts and prayers!

Cheryl

[Catflower]

I just recently went through the exact same feelings your experiencing.  I was diagnosed in November 2006 and am anxiously awaiting surgery the week of April 17.  My first feelings were identical; scared, paniced, depressed, feeling like crying, but I got past that with the help of this great site.  This is a great place to share your feelings with people who know what you're going through.

[Jackie]

Thank-you all for your helpful responses! I really didn't mean to sound like a baby, as I have always been a fairly strong woman. I guess I found my vunerability! Just to let you know, in July of 2006 I felt a blockage in the right ear, like I had been on a plane and needed that clearing once you land and was told by my Doc. to try plugging my nose and blow to see if that cleared! Hah, it didn't I was then referred to the ENT dept. who never called me for an appt., I was busy, put it on the back burner, till Nov. when I really was noticing a marked difference in my hearing, plus this rustling sound constant in my ear. Long story short hearing test confirmed that drop in hearing and the MRI which also confirmed the AN. Anybody out there have any procedure in and around the Portland Oregon area? Again, thanks for listening, I read all of your discussions, and appreciate having you with me now. Hopefully I can be of some help and comfort to you too! Thanks again, Jackie

[Jim Scott]

Hi, Jackie:

Let me add my welcome and my sympathy for your situation, which all of us have been in, or we wouldn't be posting on this forum.

Panic is pretty much the normal reaction to an acoustic neuroma diagnosis, but time and some research will tamp down those feelings.  Not that there is anything especially good about having one of these things inside your skull, but as your AN is relatively small and your symptoms fairly mild, you do have genuine cause for a certain degree of optimism.  The main reason for optimism is the fact that you have options.  From 'watch-and-wait' (everybody's favorite) to non-invasive radiation treatment (second favorite) to the least favorite, microsurgery, you will have various choices to make and you'll have the time to make them.  That is a real plus. 

Some of us (see my signature) were diagnosed with an already-large AN tumor pressing on the brain-stem and had no real option except almost immediate surgery (and follow-up radiation).  You are somewhat fortunate to not be in that kind of crisis situation.  You may well have to do something in the near or far future, but you have choices.   I know you'll do your research, schedule your doctor consultations and ask questions all around, as you should.  Use your time wisely.  Make an informed decision based on facts, not fears.  Meanwhile, we stand ready to offer you whatever help we can, not as physicians but as people who have been in your shoes, as it were.  Please visit us often and feel free to post any questions or concerns you may have.  Knowledge really is power.

Jim
 

[Boppie]

Jackie,  I am a 65 year old Grandma and had my treatment a year and two months ago.  Life is still as beautiful as ever.  The "Why Me," stage will pass quickly for you.  I can tell by your positvie attitude.

[kat]

Hi Jackie

I am almost the same age as you and was diagnosed with a 2.2cm AN pretty much the same way as you after having hearing loss and tinnitus . The AN was a quite a surprise ! After the initial shock of having a BRAIN TUMOUR!!!! my husband and I did a lot of research into treatments and finally decided on having Gamma Knife here in Sheffield UK.  One of the main reasons for having GK was the fact that apart from some loss of hearing and tinnitus my symptoms were minimal and I felt fine. I am now over 21 months post GK and apart from a episode of headpain 8 months after the treatment I have felt fine and have got on with my life as usual.
My last MRI 2 months ago showed that the AN was shrinking slightly which made me very happy about my choice of threatment  . 

Your AN is quite small which gives you plenty of time to do your research into all the treatments available including watch and wait.
I agree with everyone else that the experience of the team doing the surgery or treatment is the most important thing.  I wish you luck with making your choice .

Best regards Kat

[Jackie]

Welcome !

  and relex .. breath deeply ... everyone goes thu this "panic" stage!!      Take your time and reasearch your options.. these tumors are normally slow growing (I bet your "friend" has been there for years) so another few months should make no difference.. your in no rush to do anything!  it still at a smallish size, so you could just watch it and wait, surgery, or radiosurgery!...

Thank-you Joef for your great advice! It's nice to know that my initial reaction is somewhat normal! I look forward to learning more about this intruder and value all of your input! Thanks again,
Jackie

[Jackie]

Hi Jackie and welcome.... and JoeF is right... just time for a deep breath.... we all truly do understand and here to support each other as best as we can.

Ok, I'll attempt the garbly translation for you.  Anyone else want to chime in, please do.....
"right cerebellopontine angle isointense T2 mass extending into right internal auditory canal."
This means the AN is indeed on your right side, in the IAC, just peeking out to the CP Angle region..... so, it's peeking out but based on what is noted, not pressing on the brain stem, which is terrific

The 8th Cranial nerve is your vestibular/hearing (and balance) nerve, so, thus, an "acoustic" neuroma


"11 mm transverse x9 mm AP"
Ah, great news!  it's considered small to medium, thus, highly treatable and worth keeping an eye on.  11mm = 1.1cm.

Now, the most note-worthy is this.... Acoustic Neuromas (AN's) are benign.  Benign is a lovely word... truly.  Also, it does not penetrate the brain itself.  It may be pressing on it (MAY is the key word) but does not penetrate the brain.

So, overall... it's small to medium, highly treatable, may be worth keeping an eye to make sure there is no further growth.  If you are having any symptoms such as balance issues, tinnitus, facial numbness, etc, these are the things you want to make sure you not to your dr.

There is much info out here so my hope is that you sit back with a cup of coffee (or your favorite drink), take a deep breath and read some of the info that is available out here.  And please keep in mind that we all truly do understand. Many here are like you... just receiving their diagnosis, some that just had treatments for their AN's and some that had treatments a while ago and as you will see, life is certainly moving along for us......

Again, welcome....... and know that we stand beside you and will help in any way we can.

Hang in there.
Phyl

Thank-you Phyl, I really appreciate your interpreting my diagnosis. My ENT wasn't qite as explicit so you have helped. I have decided to "watch and wait" as I certainly don't feel informed enoght to make a wise decision. Being on an HMO, like Kaiser, I need to find out who all they would contract out with since Kaiser does none of the procedures itself. It is all overwhelming, but I feel that all of you have been a great help so far, and appreciate you so very much! Thank-you and I am keeping all of you in my prayers! Jackie

I was just diagnosed Feb. 5th, like other newbies, I am in shock and have a lot to learn and am glad to have found this forum!!! My AN is right side , exact quote from diagnosis " right cerebellopontine angle isointense T2 mass extending into right internal auditory canal. Mass likely impinges upon the exiting right 8th cranial nerve. 11 mm transverse x9 mm AP. This is Greek language to me since I have so much to learn and explore. I live in Oregon and am on LKaiser, however they do Not do any procedures within Kaiser, but refer out. So help me please with whatever suggestions anyone out ther has. I am a happily married 59 yr old young Grandma of 5 and want to be positive about the future and end this pity party soon! Thank-you for any help you can give me. Jackie

[Sefra22]

Hi Jackie,
My answer to your question "How do I keep from crying???"  Is just go ahead a do it. I have certainly had my share of meltdowns, and it feels good to get the feelings out. I am generally a positive person so I only allow myself a certain amount of time to feel sorry for myself, then I shake it off and go on with life. I did as much research as possible, (this forum has been a sooo helpful), and it made me feel  like I was in control  of my life again,
 
Lisa

[Obita]

Hi Jackie:

Nice to have you on.

Time heals, even if you have an AN in your head.  It really does.

Good luck on your wait and watch!!  Kathy

[Sam Rush]

there is no reason not to be optimistic about the future, you have a treatable small BENIGN tumor. The treatment you choose will inconvenience you for a while, and your future will go on as planned.   My AN was the same size as yours, and my first thought was, THANK GOD I made it to age 63 and my worst illness ever is a 10mm treatable benign tumor.I was back at work 2 1/2 weeks after microsurgery with no complications except for single sided deafness which does not seem to be a major problem for me. However, I did spend the time and money for a BAHA, which is a seperate subject.  Best of luck to you.

[Jeff]

Hi Jackie,

I am sorry that you have to deal with this. I can share a bit about Kaiser in Oregon. My brother is insured through Kaiser in Oregon, and has had a number of treatments (we have NF2). He had radiosurgery at Legacy Emanuel in Portland that was paid by Kaiser. He has been referred to a Kaiser facility in San Diego for surgery. He also had surgery at a Kaiser hospital in Los Angeles that was performed by doctors from House Ear Clinic. I don't know a lot of details, but I believe that all of his treatments were paid as though he were being treated in Salem. I would suggest that you talk to your doctors about where they can send you. Also, my father had successful AN surgery at OHSU in Portland. Doctors McMenamee and Delashaw performed his surgery.

Please let me know if I can help in any way.

Jeff