Author Topic: Not sure what to do  (Read 4498 times)

bugman

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Not sure what to do
« on: January 18, 2007, 09:19:50 pm »
I had my MRI on new years eve. After the procedure I asked the tech if there was anything in my head. She showed me in detail the neuroma. butnever mentioned that is what it was. The report states that it is 4 mm. I suppose that is small. I saw a surgeon at Loyola Hospital recommended by the ent doctor I saw for mastoiditis. The surgeon  did recommend to wait but offered his services with enthusiasm. in a matter of a week my ear is ringing like mad. I have not made a decision yet what to do. I have researced the radiosurgery aspect of this treatment. There is the one shot and the many shots. I would have to have fsr here because of the number of treatments. I could go to Pittsburg for the one shot. Of course I am totally confused and depressed. I will read more on here for sure. Good luck everyone!

Battyp

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Re: Not sure what to do
« Reply #1 on: January 18, 2007, 11:25:21 pm »
Bugman you sound overwhelmed!  Take a deep breath and please please please ask us any questions you'd like.  We'll help you in anyway we can!  First off where are you?  Have your doctors seen many AN's?  Have you asked the ana to send you their booklets?  They are very helpful in wading through the info and options. 

You'll find we're one big supportive family on here we just need to know how to support you!  So sorry you are joining our exclusive club. 

Michelle

Denise

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Re: Not sure what to do
« Reply #2 on: January 19, 2007, 07:32:00 am »
Bugman,
I agree with Michelle. Take a deep breath and relax.  There are alot of helpful people on this forum,  who have had radiation and can help you ask the good questions when you are in drs. office. I am confident you will make the right decision for you. it is a scary thing to find out you have a tumor, but these are benign which is very positive side of the whole ordeal.  It sounds like yours is small and they have found it early you have many options.

Take Care,

Denise
4+ cm, left side
translab 5/9/2005
CSF leak repair 6/23/2005
platinum weight in left eye 11/9/05
12/7 nerve switch 8/3/06
Univ. of MN Drs. Levine/Haines

Lorenzo

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Re: Not sure what to do
« Reply #3 on: January 19, 2007, 10:57:24 am »
Bugman, I agree with Michelle, take a long deep breath and try to relax. Easy said, I know... It will get easier as you go along. Look into the options, talk to specialists in field, find the ones that have the most experience, and then pick a treatment that suits you in terms of comfort. What you are comfortable with will go along way in making the entire journey a lot easier for you.

But most of all, remember that we are all here to help you in any way we can!

All the best, Lorenzo

nancyann

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Re: Not sure what to do
« Reply #4 on: January 19, 2007, 11:07:45 am »
Hi there Bugman:

Confused & depressed???   Absolutely,
but,  the good news:
so far it's still small (4mm);
as all have said, you CAN take your time, check out the options available:  watch & wait, radiosurgery, microsurgery.

Wishing you all the best on your journey,      Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
right facial paralysis
good to go.

Obita

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Re: Not sure what to do
« Reply #5 on: January 19, 2007, 06:29:24 pm »
Hi bugman:

Welcome to the forum but I am so sorry you need to be here. 

We have all been there.  Anything you need, we are here for you.

Good luck in your research and give a yell if you need a shoulder or an opinion.

Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Ellid

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Re: Not sure what to do
« Reply #6 on: January 22, 2007, 08:44:46 am »

 in a matter of a week my ear is ringing like mad. I have not made a decision yet what to do.

It wouldn't surprise me at all if the suddenness of the ringing in your ear was partially psychosomatic - I started getting really bad headaches within a week of being diagnosed.  I also had some tingling on the *other* side of my face.  In both cases I was overreacting, and once I realized that the headaches were caused by tension and the tingling by TMJ, both symptoms disappeared almost overnight.

Your tumor is small and easily treatable, and your doctor is correct that you are a good candidate for watch-and-wait.  Do NOT rush into surgery, or anything else!  Consult the nearest specialist, which I assume in your case means someone at Pittsburgh Eye and Ear.  Read the pamphlets from the ANA, talk to some other AN patients, and relax.  This is not the end of the world, and you will be fine at the end of it.

Peace,

Lisa/Ellid
Diagnosed 12/8/06 with 1.6 x 1.4 x 1.3 cm AN right side.  Currently on watch-and-wait with Dr. Michael McKenna, Mass Eye & Ear Infirmary, Boston.

pearchica

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Re: Not sure what to do
« Reply #7 on: January 23, 2007, 10:37:15 pm »
Bugman! Research, Research, Research! This is a BENIGN Tumor, and at 4mm you are in a great position to learn about this.  The first week is the worst by far, but you have a variety of options available to you. It doesn't help that it's cold outside and winter, that depresses all of us.  However, you have the luxury to study this neuroma thang and make some great conclusions that are right for you.  I have had 3 consultations at this point and am finally making my desicion which I feel fine about because I did the research and in the meantime came across a great group of people to boot. take care of yourself and keep us updated! Annie 8)
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

Sue

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Re: Not sure what to do
« Reply #8 on: January 24, 2007, 10:09:04 pm »
Hi Bugman,
Welcome to our version of "Club Med"!  This is a great place for information, inspiration, and fellowship among the chosen few who are on this little journey together. Why us?  We haven't a clue and believe me, we've all tried to figure that one out.  You are lucky, believe it or not, to have discovered your AN at such a small size. Mine was 2 cm when mine started talking to me.  The first weeks are terrible and we've all had to deal with all the "stages of grief" that you go through when diagnosed with a problem that you will probably feel the effects of, one way or another, for the rest of your life.  But, like the others have said, this too shall pass and once your course of action has begun in dealing with that little bugger, the better you will feel and the panic will subside.  You will get lots of advice here.  Learning about Acoustic Neuroma's is the first step and then learning about treatment plans is the second step.  We encourage you to remember that you are the one in control of your medical treatment and if you don't quite like what your doctors are saying, then see somebody else.  Find the medical team that will answer your questions and can prove to you that they have experience in dealing with AN's.  Some people on this forum were able to travel far and wide to find the team that they were comfortable with.  I chose to stay in my home area and since my doctor right away suggested I was a good candidate for Gamma Knife, then that was okay with me!  Since mine was already a medium sized tumor, I wanted to get some kind of treatment started as soon as possible.  You have much more time to figure things out, and your doctors might advise a "watch and wait" approach for you, anyway. But AN's can be strange little guys...a small one may cause lots of problems, depending on where it decided to grow. Some people on here didn't discover their AN's until they were practically life threatening. Anyway, we are glad you found this site and we welcome you and any questions you might have.  I wish you the very best in your research and eventual recovery from your "invader". 

Kindest regards,

Sue in Vancouver, USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
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