Author Topic: New Member joining the group  (Read 7039 times)

davjack

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New Member joining the group
« on: October 27, 2009, 12:46:17 pm »
Hi everyone - I'm a newbie. I found out about 3 weeks ago that I've got this thing in my head through an MRI (open MRI). I met the otologist yesterday and he told me I need to decide between the cyberknife or surgery. My gut is telling me to go with the surgery. I want this thing out of my head. But I know the surgery is rough. I'm 48, in good health (as far as I know). I am afraid of surgery but more afraid of having a mask straped to my head and bolted to a table or whatever the hell it is they do to you in the cyberknife cafe. I am extremely claustrophobic. I just don't know what to do. I really don't. I am so afraid and feel like all I do is cry now.  
Thanks for listening
DJ
« Last Edit: October 27, 2009, 03:20:16 pm by Jim Scott »
Lumpy is 1.3cm...am now in W&W mode since Dec. 2009

jaylogs

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Re: New Member joining the group
« Reply #1 on: October 27, 2009, 03:44:15 pm »
Hey DJ...glad you found this great forum for all things that are AN.  If you've done any kind of reading of all the other posts on here, you'll find a wide range of emotions that everyone has gone through in dealing with this.  Just know that you aren't alone in this. I myself just got diagnosed a couple of months ago and am gonna have surgery on Dec 9th.  I too was agonizing over what to do. I also just wanted this thing out of my head so I chose the surgery approach.  As you start getting consulations, you'll probably get a different one each time from different doctors, which can further adds to the frustration.  I would highly suggest getting more opinions from other doctors, as well as getting those of the great people here on this forum who have been through both radiation and surgery on how their experiences were.  I hope in time you'll find the best course of action that will suit you. I read somewhere on here that there is no wrong decision, just as long as it feels good for YOU. Good luck with whatever you decide, and if you have ANY concerns, questions or just want to vent...this forum is the place to do it. We are all here for you! :)

Regards, Jay

PS: What size is your AN?
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

lawmama

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Re: New Member joining the group
« Reply #2 on: October 27, 2009, 04:36:08 pm »
Hi, DJ,

I'm also fairly new to this.  I was just diagnosed on 10-15.  It can be scary and overwhelming and like you, I still have days where I am sad about this.  I think it is ok to feel a little scared, sad or mad.  Honestly, though, it is going to be ok!  You will hear from so many fabulous people who made it through all of this and are leading normal lives now.  You are still fairly young and you are healthy, so you have two big pluses going into this.  This board has helped me so much.  The people here are so supportive and always willing to answer any questions.

We all go through a tough process deciding what procedure is right for each of us.  I'm still going through that process.  In the end, I think that Jay has a point that the right decision is whatever is right for you.  I think you will find only support here no matter what you ultimately choose.

Lyn
9mm X 7mm tumor (left side), diagnosed 10-15-09
Retrosigmoid on 12-14-09 by Drs. Antonelli and Lewis (my heroes!)
Shands in Gainesville, FL
SSD, but no facial issues.  Mild tinnitus.

Kaybo

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Re: New Member joining the group
« Reply #3 on: October 27, 2009, 05:03:19 pm »
Hey DJ~  Welcome!  Will you tell us a little about yourself - how big is your tumor, where do you live, etc.  We are a very curious group - but only if you feel comfy sharing that!!  Feel free to ask questions or just vent - that is what we are here for!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Sue

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Re: New Member joining the group
« Reply #4 on: October 27, 2009, 06:00:44 pm »
Hi Davjak and welcome,

First of all, remain calm and look at all of your options very carefully. Do not, I repeat, do not let something as insignificant as a face mask be the deciding factor in rejecting CK treatment.  Jaylogs, you are able to use meds to calm you down in that situation.  I had the headframe and the pins and the whole nine yards.  Of course, they have me a nice little white pill and I remember very little of the whole thing.  You may reject CK or GK for a variety of other reasons, but please don't worry about claustrophobia.  Honestly, these doctors are wanting you to get through all of this with as little discomfort as possible.  Be sure you talk to doctors who will give you a balanced perspective on your treatment options.  You will hear the old "radiation treatment gives you a greater chance of cancer" warning, but they also need to caution you of the dangers of general anesthesia.  About the same risks, I think!  So, consider your options and talk to good doctors.  If the surgical route is your preferred treatment, get a good, experienced team who have done plenty of AN surgeries.  This may be a benign tumor, but it still is in your head, and you don't want just anybody rooting around in there!  ;)  

Best of luck to you,

Sue in Vancouver USA
« Last Edit: October 27, 2009, 06:02:43 pm by Sue »
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!
Poet Lorry-ate of Goode

leapyrtwins

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Re: New Member joining the group
« Reply #5 on: October 27, 2009, 07:38:34 pm »
DJ -

welcome to the forum.  As someone who had the choice of surgery or GK (and ultimately chose surgery) I can totally relate to what you're saying.  I'm the kind who just wanted the tumor OUT of my head - plus I couldn't imagine having a metal frame bolted to my skull for GK.  Although, surprisingly enough, the thought of two docs inside my head didn't really phase me.  Go figure!  ;D

Surgery is tough - but definitely surviveable - and I say that from firsthand experience. 

Those who had radiation seem to like it, but it's not for everyone (including me). 

You need to choose the treatment option that is right for YOU though, so go with your gut (after you've done your research).

Being diagnosed with an acoustic neuroma can be overwhelming and frightening, but we're here to help and support you.

Have you contacted the ANA yet for their information?

Jan

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

Syl

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Re: New Member joining the group
« Reply #6 on: October 27, 2009, 10:03:56 pm »
DJ:

Welcome! I just want to mention that there is often a 3rd option--watch & wait--depending on the size of your tumor. I know you want it out, but there are folks who do choose to watch & wait.

I chose surgery--I also wanted the darn thing out. It's a long recovery but I got through it. Get as many opinions as it takes to help you make a decision. Remember that acoustic neuromas are slow-growing tumors.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

moe

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Re: New Member joining the group
« Reply #7 on: October 27, 2009, 10:50:39 pm »
Hi DJ,
A friendly hello and glad you found us. We are here for you. Bouncing off ideas, fears, questions is a great thing here.
Whichever route you decide to go there will be many people who have been there.
Hope we hear more from you.
Once the shock wears off, you will feel so much better.
It is not life threatening and is sllloooooowwwww , very slow growing.
So take time to do your homework, take breaks from the forum when you can. It can get quite overwhelming.....
One day at a time ;)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

tenai98

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Re: New Member joining the group
« Reply #8 on: October 28, 2009, 09:20:59 am »
Hi DJ
I was just shy of 50 when I had my surgery 7 months ago...It wasnt all that bad...the main thing to do is get up and walk...the first 3 days dont count.  those are not fun....but not bad either in hindsight.
Jo
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

davjack

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Re: New Member joining the group
« Reply #9 on: October 28, 2009, 09:23:57 am »
Thank you all so much! You've made me feel a lot better.

This all started back in like May with an ear infection. But now I'm thinking, maybe it wasn't an ear infection, though I did feel flu like symptoms as well as vertigo. I went to my GP with the vertigo and they took a big ear wax plug out of the left ear (the tumor ear). I had the veritgo off and on for about 3 weeks. Then none. A little dizzy here and there.

I noticed I had some hearing loss on the left side and went to an ENT for a hearing test back in Sept. He ordered an MRI, saw the tumor and referred me to another ENT specialist, Dr. Grobman.

I don't know the size of the tumor but I'm going to find out. The first ENT I saw said it was very small and Grobman said it was medium to small. I guess he felt I was too much of a moron to give me numbers. I didn't have a good feeling about him.

I'm exploring my options right now as far as doctors. I contacted Dr. Antonelli up at Shands and am waiting for a response. Also thinking of the Mayo Clinic in Jacksonville. Also, I'm going to send a copy of my MRI to the House Ear Clinic in Calif. Supposedly, they'll read it for nothing. Anyone have any experience with that?

DJ
Lumpy is 1.3cm...am now in W&W mode since Dec. 2009

cindyj

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Re: New Member joining the group
« Reply #10 on: October 28, 2009, 09:43:11 am »
Hi, DJ...and one more welcome to the site!  Yes, many here have sent their MRI results out to House (HEI) for a free consult.  It really does work!  A doc really will call you very quickly - I was amazed.  Some folks end up out there for their surgery (as I did) and others just use the advice given them as one more opinion to help make a treatment decision.  Have heard great things about both Shands and Mayo.  (I grew up in Jacksonville, by the way.  Where are you?)  I would at least look into CyberKnife and GammaKnife just so you have all the facts to help you with your decision. From everything folks say here, radiation is a "breeze," relatively speaking :).  It is something you definitey have to decide for yourself and you will know what's right for you at some point...may take some time to get to that point, though ;)  It took me 6 months to decide for sure. 

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

JerseyGirl2

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Re: New Member joining the group
« Reply #11 on: October 28, 2009, 09:47:13 am »

 Also, I'm going to send a copy of my MRI to the House Ear Clinic in Calif. Supposedly, they'll read it for nothing. Anyone have any experience with that?



Hi, DJ,

Yes, this is definitely a good thing to do. One of the surgeons will contact you by phone within a day or so of receipt of your MRI. You should include a copy of your audiology report along with the MRI.

It sounds as though you're doing a good job with your research. If the idea of radiation treatment appeals to you, you should investigate that as well. Many on the forum have been pleased with their results from that technique.

Best wishes,

Catherine (JerseyGirl 2)
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

Jim Scott

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Re: New Member joining the group
« Reply #12 on: October 28, 2009, 01:22:22 pm »
Hi, D.J. ~

I just wanted to post a 'formal' welcome and my hope that you can get better answers from your next physician consultation.

Although I'm not in your geographical area and can't offer any personal recommendations, I've read that Dr. Antonelli and Shands have a good reputation.  As others have noted, sending your MRI CD to HEI in Los Angeles is always a good idea.  To the best of my knowledge, their analysis is free - and they usually respond quickly with a phone call from the doctor. 

Feel free to post questions and comments.  We understand what you're going through and we want to help wherever we can.  Just ask.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Kiwi Don

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Re: New Member joining the group
« Reply #13 on: October 28, 2009, 03:41:10 pm »
Hi DJ,
I just want to add my welcome to you to the AN family, we are all here to help you with your journey.
Don
24July09 Diagnoised with Left AN 2.0cm x 1.9cm
Translab Scheduled 7April10

"Received the Ticket, Boarded the Train, and now the Journey has begun??"

Vivian B.

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Re: New Member joining the group
« Reply #14 on: October 29, 2009, 07:49:58 pm »
Hi DJ

Welcome to the forum. I felt like you did after being diagnosed, slowly but surely it's starts to sink in and you begin to say, o.k. it's there, think clearly of the next step. Remember this is a benign tumour and always think it could have been much worse. Although I understand it does not take away the fact that you still need to deal with it. It's a long journey but everyone gets through it as scary as it may be. Patience is definitely a virtue in this case. I went as far as viewing the surgery on some web site I found just to face my fears your might say, I don't know,  or maybe it was just complete insanity on my part at the time. This forum will bring  you a lot of comfort and good information. I cannot believe how many more people are on this form since I found it 7 months ago. It's truly amazing. Hang in there.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

 


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