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Author Topic: I didn't want to join this group!  (Read 6018 times)

loose screws (tightened)

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I didn't want to join this group!
« on: September 23, 2009, 10:11:53 pm »
As I'm sure nobody would. Any how I just found out I have a tumor in my head. Wow that's something you never expect to hear. Well I've been spending all my free time on the net trying to find out every bit of information I can and this looks like a good place to get what I'm looking for. Real people real experiences, cool. I don't know where to look first on this forum. I guess the pre-treatment options?
I feel like I've been hit in the face so hard I can't think straight.
Well, I'm glad for this forum.
Mike
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47 Y/O. diagnosed AN After MRI. 4X5X7mm within the right auditory canal. Slight hearing loss, ringing in ear, vertigo. Middle fossa with House Ear Clinics Dr Brackmann and Dr. Schwartz on 11-16-09. 6 new tightened titanium screws but no more hearing.
http://mikessurgery.blogspot.com/

opp2

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Re: I didn't want to join this group!
« Reply #1 on: September 23, 2009, 10:21:31 pm »
Hi Mike. I'm sorry to have to say, welcome. There are some very cool people on this site. I have not had surgery yet, but have been researching like a foolish demon since April. I've made some boa boas along the way. You have a relatively small AN in the AN world. This is good. Despite what you think. I know what I thought when I first saw mine, so I know what you're feeling. Well sort of...

Read. Absorb. Read some more. Talk to lots of docs. House is a very very good start.

I wish you peace.

Nikki
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Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

loose screws (tightened)

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Re: I didn't want to join this group!
« Reply #2 on: September 23, 2009, 10:39:34 pm »
Thanks Nikki. I have a feeleing I'm going to be on this forum everyday for a while. It's nice to know there are others out there with our problem. Have you gone back and forth on what type of surgery to go with?
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47 Y/O. diagnosed AN After MRI. 4X5X7mm within the right auditory canal. Slight hearing loss, ringing in ear, vertigo. Middle fossa with House Ear Clinics Dr Brackmann and Dr. Schwartz on 11-16-09. 6 new tightened titanium screws but no more hearing.
http://mikessurgery.blogspot.com/

sgerrard

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Re: I didn't want to join this group!
« Reply #3 on: September 23, 2009, 10:48:07 pm »
Welcome to the forum, Mike. You have done the right thing to start your own topic here, you will get more responses tomorrow. Ask as many questions as you like, there is always someone willing to answer. Going back and forth on what treatment to have is pretty standard. Just work through it, at some point you will know what you are going to do.

Steve
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8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

loose screws (tightened)

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Re: I didn't want to join this group!
« Reply #4 on: September 23, 2009, 10:58:33 pm »
Steve, thanks for your words and guidance. With the willingness to help around here I'm sure i'll get this figured out eventually.
Mike
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47 Y/O. diagnosed AN After MRI. 4X5X7mm within the right auditory canal. Slight hearing loss, ringing in ear, vertigo. Middle fossa with House Ear Clinics Dr Brackmann and Dr. Schwartz on 11-16-09. 6 new tightened titanium screws but no more hearing.
http://mikessurgery.blogspot.com/

4cm in Pacific Northwest

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Re: I didn't want to join this group!
« Reply #5 on: September 24, 2009, 05:57:17 am »
Welcome Mike.

DHM  :)
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4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

leapyrtwins

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Re: I didn't want to join this group!
« Reply #6 on: September 24, 2009, 06:22:19 am »
Hi, Mike and welcome.

You mention types of surgery, but with an acoustic neuroma your size you might want to consider radiation.  Treatment is a personal choice, as you'll soon see, but you want to investigate all your options.  To that end, somewhere in your decisionmaking process you should consult with a doctor who does radiation so you get both sides of the picture.

Being diagnosed with an AN is very frightening and overwhelming.  A good place to start, in addition to the Forum, is the ANA.  If you contact them, they will send you their informational brochures which many find to be very valuable.  They are written in plain, easy to understand language for all those non-medical personnel among us  ;D

Good luck on your AN journey, and please do not hesitate to ask us anything.  That's what we're here for - and we'll be glad to help in any way we can.

Best,

Jan
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Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Nani

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Re: I didn't want to join this group!
« Reply #7 on: September 24, 2009, 01:36:11 pm »
Hey, Mike.

  I know what you mean about being slapped in the face.  You are not alone, I promise.  Deep breaths and one day at a time.  The best thing you can do for yourself is explore all your options, get educated by researching and asking questions and don't isolate yourself.


  ~Nancy~
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- AN surgery 3-17-09. 3.8 x 5.1cm tumor.  1 month in the hospital and a couple in ST, OT and PT.

*People are always going to be behind you telling you you can't.  The important thing is to turn around and say 'watch me'.

loose screws (tightened)

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Re: I didn't want to join this group!
« Reply #8 on: September 24, 2009, 01:39:52 pm »
Thanks DHM. And Jan, It's funny you said I mentioned types of surgery and assumed I was not considering radiation treatment when I wrote that reply to Nikki. At the time I wrote that, I was swinging towards the surgery decision and away from the radiation that I once

favored. Everything is still so new I don't have any idea what my final decision will be.  I have an appointment at the house and from what I can figure they are pro surgery. So I'll give them a listen and hear what they have to say. In the meantime 'll take your advice and

contact the ANA for their brochures. Do you know of any places around So Cal that do radiation therapy that I could contact to get educated on that approach?

Thanks Jan
--Mike
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47 Y/O. diagnosed AN After MRI. 4X5X7mm within the right auditory canal. Slight hearing loss, ringing in ear, vertigo. Middle fossa with House Ear Clinics Dr Brackmann and Dr. Schwartz on 11-16-09. 6 new tightened titanium screws but no more hearing.
http://mikessurgery.blogspot.com/

epc1970

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Re: I didn't want to join this group!
« Reply #9 on: September 24, 2009, 03:41:14 pm »
Hi Mike
Just wanted to say "welcome" and to wish you the best of luck making your treatment decisions. As has already been said before....research, as questions, take your time. After you start having consultations you will figure out what is best for you and who you want to have treat you. I was lucky in some ways in that surgery was my only option for treatment but I did go thru several surgeons before I found the one that I knew would be my surgeon. I saw that you were waiting to talk to House and as I am sure you know by now they are super expirenced in treating AN's and that is what you want: expirence with AN treatment. Take Care Mike!

Erin
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DR

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Re: I didn't want to join this group!
« Reply #10 on: September 24, 2009, 04:09:57 pm »
Mike,

Sorry you are here, but welcome to this exclusive group.  You have found an excellent place.

Don't forget this important fact - taking a day or two away from researching things is a good practice.  I know I quickly got to a point of "too much, too fast."  Someone on the board made a suggestion that there is nothing wrong with just dropping things for a while.  I did that one weekend... and suddenly there was clarity.

Best wishes,
Dennis
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AN right side 12mm x 9mm x 9mm
Middle fossa surgery 11/4/09 at House (Dr. Brackmann/Dr. Schwartz)
Tumor removed, no facial issues, hearing intact!
http://denvstumor.blogspot.com/

"The greatest trick the devil ever pulled was convincing the world he did not exist."

Mickey

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Re: I didn't want to join this group!
« Reply #11 on: September 24, 2009, 04:57:31 pm »
Hi Mike! We all here know the feeling when you find out there is something in your head that don`t belong there. Iv`e had mine dionosed for over 2 years now and only god knows how long it was there before that. Mine acually sits larger .12X.06 than yours and so far hasn`t givin me much of a problem "stable". Just wanted to let you know you have time to figure out what to do. As for me I`m just going to W+W untill the need arises for it to be dealt with, hopefully never! All cases are individual and everyone is different in their choices. Just wanted you to feel reassured that progress has come a long way in this field for whatever you decide. Best Wishes! Mickey
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msmaggie

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Re: I didn't want to join this group!
« Reply #12 on: September 24, 2009, 05:46:26 pm »
Welcome Mike.

We forumites are all familiar with the license plate of the truck that hit you.  It takes a while to get your mind to wrap around the announcement of "You have a brain tumor."  Read. read. read. and then give yourself time to process.  The time will come when you know that you have made a decision you can live with.  I went back and forth between radiation and surgery several times before I made my decision.  Any questions or doubts that you may have will be addressed w/ compassion, wisdom, and humor here on the forum. 

Priscilla
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Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

Lilan

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Re: I didn't want to join this group!
« Reply #13 on: September 24, 2009, 07:55:52 pm »
We forumites are all familiar with the license plate of the truck that hit you.

:D :D :D

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Facial nerve hemangioma. Probable dx 7/2008 confirmed 4/2009. Combo middle fossa and translab to remove the blood vessel malformation and snip ruined hearing and balance nerves by Drs. House and Brackmann @ House 6/2009. Doing great!

sgerrard

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Re: I didn't want to join this group!
« Reply #14 on: September 24, 2009, 08:57:26 pm »
Mike,

You can find out great info about Cyberknife (and other forms of radiation) at the CK Forum:
http://www.cyberknife.com/ForumLanding.aspx

I am a bit partial to the CK group at Stanford, since it is where I went. You could try an email directly:
http://med.stanford.edu/profiles/cancer/faculty/Steven_Chang/

Steve

PS: The plate reads: AN 4 U  ;D
« Last Edit: September 24, 2009, 11:23:46 pm by sgerrard »
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8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.
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