Hello from a newbie!

[clr]

I am new to this site. I do not have an AN but our daughter does. She is 23 years old. She was complaining late last summer that she couldn't hear out of her left ear. We tried ear wax removal which didn't work. She went to our family doctor and he perscribed antibiotics, twice, (since the first go didn't help). Then, he sent her to an ENT specialist. After doing the hearing test and finding she had no hearing in her left ear, he scheduled an MRI. Her MRI was on December 1st. December 2nd we met with him a 9 am and we were told that she had a tumor, and he showed us the pictures. It was HUGE!! We were in total shock! He was so reassuring, telling her that it was 99% benign and that she was young and would recover quickly. He then scheduled us for an appointment with his collegues in Pittsburgh.

We left his office and went straight to Pittsburgh and met with a neurosurgeon and ENT. Her first surgery was December 29th. When she came out of the surgery, I thought we were going to be there at least a week. Her surgery was on Monday, we were on our way home Wednesday! Her second surgery was January 19th. The second surgery was to remove the rest and then she would have the cyberknife. However, when we went back in April, we were told it was still too big for radiation and she will need another surgery. They were afraid if they radiated it and she would need more surgery, that operating on a radiated tumor is much worse than operating on a non-radiated tumor.  Her third surgery is scheduled for 6/22. 

So far, we are quite pleased with her outcomes. She did have some trouble with her one eye, but that seems to have resolved. She is very worried about facial nerve damage but so far, so good. She no longer has her balance nerves but she has had no problems without it, though. EXCEPT if she drinks alcohol. Apparently, none of her friends could figure out why she was falling all the time after a few drinks, now they understand.

I am a nervous wreck right now. The tumor is much smaller than it originally was, so now I feel they will be getting much closer to her nerves this time. Where she is being treated they have a 95% success rate, meaning no nerve damage in 95% of their cases.

I could go on and on but I will stop here. Thanks for listening!

(I have also posted in the Post treatment because of hand and arm pain that she is having.)

[CHD63]

clr .....

Welcome to this Forum!  So sorry your daughter has really been through much trauma with her AN.  Hopefully after next week, this will be the end of surgical procedures.

If you or your daughter have more questions or just need reassurance, please keep posting ...... this is a caring, supportive community of ANers!  (I have not read your other post yet .....)

Clarice

[Jim Scott]

clr ~

Thanks for joining - and posting!  I'm sorry to learn of your daughter's AN and her need for multiple surgeries, but pleased that she seems to be doing well.  If you wish, I'll be happy to post your daughter's surgery date on our 'AN Treatment Calendar' http://my.calendars.net/an_treatments/d01/06/2009?display=M&style=B&positioning=A if you give me more information - or you can copy the address and add it yourself, if you prefer.  Please know that many people who read your post will be thinking of and praying for your daughter, now and especially on the 22nd.  I'll be one of them.     

Jim

[Kaybo]

clr~
Just a quick shout out of welcome to you!  I had my surgery 13 years ago when I was 25 so I kind of know about having one so young!  I'm sorry that you are here on your daughter's behalf - but if you have to be here, this is a GREAT group of people who genuinely care and want to help out!  Ask any questions - I am heading over to see your question now!

K 

[leapyrtwins]

Hi, CLR, and welcome to the forum.

You say your daughter's AN was huge.  Any idea just how huge it was? 

I'm not a doctor, but I'm a little confused about the need for 3 surgeries.  Generally large ANs are debulked surgically and then radiated to "kill" the remaining part.  We have a forumite who had a 8 cm AN and I don't believe he had more than 1 surgery, but I may be mistaken.

Has your daughter had any other opinions/consultations since she was first diagnosed?

Jan

[clr]

Thanks to everyone for responding, caring and praying!!

Her tumor was 4.4cm x 3.2cm x 2.4cm. When we first saw the scan it looked like it took up 1/4 of her brain. It scared us big time! Especially since my father died from a brain tumor in 1990. That's all I could think about since I never heard of an acousitc neuroma. At the time when they mentioned facial damage and everything else, I was just thankful she was going to live and it wasn't cancer.

Where we live, if you have anything major wrong, the place to go is Pittsburgh for the best treatment. When the ENT sent us down there, and I called my sister and told her who we were going to see, the doctors at her office said that he was one of the best.

Her tumor is pressing on her brain stem and into her brain. She was to have 2 surgeries. One was to debulk it, then after it falls into place she was to have another one. For both of her surgery's we didn't see her for 12 hours.

Believe me, when we were told in April that it was still too big for radiation to work effectively, we were totally disgusted and so disappointed! I guess they were being so careful not to hurt any nerves that they were too careful and left too much.  We were also told that it is still pressing on the brain stem.

Truthfully, I have been coming here and sometimes I would read something that would make me sick for a few days.  For me, ignorance is bliss I guess.

[clr]

I forgot to address the calender. Jim, I went there but I do not know how to add her surgery. It is for 6/22, her name is Betsy. We won't know what time until they call us on Friday. We will probably have to be there by 6 am.

I guess I should add that it is scheduled for 6/22. Whether they keep this date is another question. This is her third surgery date.  She works, her dad works, I work, and then they cancel on us. They have no idea the inconvenience this causes. We all have to have someone covering for us while we are gone. I do stay at the hospital with her. They bring me in a bed and I "sleep" in the same room with her.

I have never posted in a forum before so if I post too much, I do apologize. I surprised myself that I was even able to respond.

Thanks,
Cindy

[kenneth_k]

Hi Cindy.

There are no limits on the numbers of posting. As long as you feel for it, keep them coming
I wish you and your daughter all the best.

Kenneth

[CHD63]

Hi Cindy .....

Glad to have your name ..... it seems friendler somehow than a username.   

Sorry for your past "bumpings" on surgery dates ..... cannot imagine the psychological trauma of having it delayed twice.  When I had my microvascular decompression surgery at UPMC in Pittsburgh 15 years ago, I failed the bleeding time test the first time and was sent home for a week ..... bummer!  (I had not been off Aspirin long enough!!)

As for the calendar, I am sure a Moderator will add it for you, but you can also do it by going to the link at the bottom of my signature here, click on "22" of June, click "create" and then fill in the information.  Will Betsy be at UPMC?  I live just 4 hours from Pittsburgh but my usual travels do not take me up there very often.

You, your husband, and of course Betsy are in my thoughts and prayers ..... for peace and comfort knowing others care, as well as successful surgery this time.

Clarice

[Jim Scott]

Cindy ~

I added Betsy's surgery date to the AN Treatment Calendar so you're all set. 

I suppose every surgeon has a slightly different approach.  Your daughter's AN is large but mine was a bit larger (4.5 cm) and the neurosurgeon was able to cut it down to about 2.5 cm in one operation, making it viable for radiation, which I underwent a few months later.  He explained that when he 'debulked it', he cut off it's blood supply and 'hollowed it out' so that it would eventually collapse on itself.  The radiation was successful (no facial paralysis or other complications) and my last MRI showed necrosis (tumor cell death) and some shrinkage.  I'm sorry your daughter has to endure all these surgeries.  Again, she'll have the hopes and prayers of many for a successful, final surgery on the 22nd. 

Please fell free to post anytime you feel the need to ask a question or just to 'vent'.  That's what these forums are here for.  Never apologize for posting. 

Jim

[Keri]

Hello Cindy,
I'm glad you've found some support here too. We will be praying for Betsy and you as the surgery (hopefully) comes up. I hope this is the last for her.
Keri

[clr]

Yes, Clarice, she will be having her surgery at UPMC Presby. 

Thanks, Jim

And, again,  many thanks to everyone that has responded!

[ghenier27]

I was just wondering if she may have had a arnold chari decompression as her first surgery? If so, that was a total different thing. I am sorry she has had so many problems. I too am a newbie and have posted many questions to this forum and welcome their knowledge. Debi

[clr]

Debi,

I never heard of that, arnold chari decompression, so I don't think that's what she had.

Cindy

[ppearl214]

Debi,

I never heard of that, arnold chari decompression, so I don't think that's what she had.

Cindy

hi Cindy and welcome.  From the Chiari conversation (as you will see in my sig line below, I have Chiari)....the Chiari decompression surgery is done when the cerebellum slips inside the skull, which in laymen's terms, can prevent spinal fluid flow.  The decompression surgery is done to aleviate it.  From what you have shared, it, to me, doesn't sound like Chiari decompression surgery (which a few here on the site have either had done or are contemplating it now.  It is not typical with AN's, but just a weird coincidence that some of us have the 2 combined......).

Cindy, please keep us updated on your daughter and will be sending thoughts and prayers for June 22.  She has been through a great deal and sending the wellness wishes her way. Please hang in there!

Again, welcome!
Phyl