Author Topic: New and Scared  (Read 4836 times)

Darla

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New and Scared
« on: February 13, 2007, 01:39:39 pm »
I have been observing this forum for the past 2 weeks.  I guess I felt that if I posted or respsonded then I would be officially "in"!
Well the time has come and I need any and all the help I can get from anyone who will listen on this sight.  I was diiagnosed by my ENT 2 weeks ago with AN.  I have an appointment at the end of this month for further evaluation.  I live in Houston, TX and would appreciate anyone responding with any information on treatment centers in my area.  I welcome responses from anyone (not just my area) that could give me some insight into what I am facing.  I emailed Boppi last week when I read that she came to Houston for treatment.  Thank You Boppi for all of your helpful informaiton.  It made me feel more at ease just knowing that treatment is available in my home town.  After reading all of the posts on the West Coast and East Coast treatment centers I was beginning to feel like my only options would be to go out of state.  I am still very new to all of the terminology used (i.e. FSR, Gamma Knife, retro"something").
What I have received from this forum so far is that I need to talk to each doctor about their area of specialization. 

I was told by my ENT doctor that my "tumor" (I can't even say the word yet!) was small/medium.  I know he gave me some dimensions but when I heard that "word" I totally checked out on everything else the man said to me at the time. 

Surgery FREAKS ME OUT.  I am reading anywhere from 8-24 hours for some people.  I have a very busy lifestyle, 3 teenagers and I am not ready for months and months of down time.  I want more information on radiosurgery.  Does anyone out there have information on my best options in Texas for radiosurgery?

PLEASE HELP

kjmema

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Re: New and Scared
« Reply #1 on: February 13, 2007, 02:22:26 pm »
Hi Darla and welcome to our little club.  I'm not going to address all your questions because there are others here who will do it far better than I can.  I'm somewhat of a newcomer myself having just been diagnosed the end of Nov. but I  can assure you that the amazing people on this site will lead you to doctors, clinics, treatments, reassurance, calmness and just abut anything else you need.  If it wasn't for this site I'd be in a mental hospital.   I'm just writing this because if you are like I was you'll be watching the web site hourly to see if you get any replies.  YOU WILL.  You are lucky to be in a large city and you'll have options as to treatment. 

Just so you don't think the world has come to an end I'm 65 this month and heading to Vegas for my birthday, tumor and all.  A bit dizzy and a few noises in my head but what the heck it's not going to keep me down and your AN won't keep you down either. 

Take a deep breath and try to relax.  When I first got the news I just FREAKED.  I'm such a calm person but this go my attention.  Now a few months later I'm much more in control....You will be also...Keep those teenagers in line, help, advice, good wishes, and support are on the way...

Karen
left side AN 3mm IAC watch & wait hearing 100% balance slightly off

ppearl214

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Re: New and Scared
« Reply #2 on: February 13, 2007, 02:46:36 pm »
Hi Darla and welcome......

Well, ok... first thing... take a DEEEEEEP breath!  Now, let's try it again.... DEEEEEEEP breath! :) 

You got a great headstart in speaking with Boppie (she's too kewl for words  :-* ).. .and what Karen has written (she's rather kewl too!  :-* ).  AN's are benign (remind yourself to keep telling yourself that) and life can and certainly does move along.  As you can see here, there is a wealth of info and yes, just like Karen notes, things will calm down emotionally for you as you learn more.  (I'm so proud of you, Karen!  :-* BTW, Have a FAB time in Vegas and remember, what happens there, stays there!)

Darla, you are going to be fine.  If you check the individual forums on Radiosurgery and on MicroSurgery... check the forum om PreTreatment as well as the others, I have a sneaky feeling you will find many of your answers already there. 

Good ears and shoulders are here for you.. .and remember.... DEEEEEP breath! :)

Welcome again!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

kjmema

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Re: New and Scared
« Reply #3 on: February 13, 2007, 06:19:36 pm »
Darla, 

It's me again.  I had a lot to do today but have time now to send you some sites that are helpfull and easy to understand. 
 

http://www.cyberknifesupport.org/

http://www.cksociety.org/PatientInfo/radiosurgery_stereotactic_technology_comparisons.asp

Those  two sites will give you a lot of  information on Radiosurgery.  The doctors on the cyberknif site will answer questions in the support section.   Also in case you didn't know you can get copies of your MRI and send it to one of the doctors on the cyberknif site for a second opinion. FREE OF CHARGE.   

http://www.houseearclinic.com/

This site if for the House clinic in LA.  One of the top AN teatment centers in the nation.  They do surgery but are open to Radiosurgery also.  They also do MRI consults for free.  I sent my MRI copies to both places.  The more pro's that can give you advice the better.  Don't rush into anything.  Unless your symptoms are debilitating take your time to read and research.  A lot of your decision making will depend on your next MRI in 3-6 months.  Is it growing?  What is the size and location?  Do you have other health issues?  Are symptoms worse?   Just do like Phyl says and take a deep breath. 

Karen
left side AN 3mm IAC watch & wait hearing 100% balance slightly off

Battyp

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Re: New and Scared
« Reply #4 on: February 13, 2007, 06:28:16 pm »
Hi Darla,
  Tigermaiden is in houston too and might know of some local treatment options.  I know you've gotten some good advice from Boppie.  She's def in the know for the houston area!

Like Phyl said..take a deep breath!  The diagnosis can be so overwhelming and a very anxious time trying to sort out options.  Please know we're here to listen, answers questions or just plain have a chuckle with!  Laughter can be very therapeutic.  Welcome to our exclusive club and so sorry you are becoming a full fledge member.  It's a very supportive place to be. 

How old are your kids?  I have a 16 year old.  He was 15 at the time of my treatment. 

Hugs M

richard

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Re: New and Scared
« Reply #5 on: February 13, 2007, 07:22:48 pm »
Darla

I had a 1.0 cm X .7 cm X .3cm tumor removed on January 17, 2007 retro sigmoid.

I actually was going for the radiation, but a very experienced and good Doctor said do to tumor placement I was a very good candidate for Retro.

This doctor had done over 500 AN's and does both radiation and surgery.

The key factors to me seem to be:    Size and placement of tumor,  quality and experience of doctor, personal state of mind and over all health.

I was diagnose in the first week of October 06, and at that time did not want radiation or surgery, I just wanted to disappear.

By the time January came around I was mentally ready and things went well.

4-5 hours of surgery. 4 days in the hospital.  Post op MRI negative, no further loss of hearing on my audiogram last week(about 70% all there)

I do not want to influence you for surgery or against radiation, but I do want you to know that you can get through this and life is beautiful on the otherside.

I just got back from jogging less than a month post op.  I do not know if I should have but I could not resist.

Love
Richard

Obita

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Re: New and Scared
« Reply #6 on: February 13, 2007, 07:32:20 pm »
Hello Darla and congrats to you Richard - jogging a month out???  That is great news!!

As others have said, once the shock wears off and you know everything there is to know about an AN, you will relax and want to deal with it so you can get on with your life. 

Good luck Darla and we are here for you!!  Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Boppie

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Re: New and Scared
« Reply #7 on: February 13, 2007, 08:43:46 pm »
Darla, I emailed you a link to a page on Stereostatic Radiology at the Hermann/Methodist complex.  There is a phone number to call and ask your questions about where and how to get a consutation.  They might be able to get the referral from your doctor to get started.  Sorry, but most sites on radiation therapies address the oncology side of tumors.  But the machinery is centrally positoned and used for both benign and non benign lesions.  Don't let the terminology scare you. 

Jim Scott

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Re: New and Scared
« Reply #8 on: February 14, 2007, 03:41:25 pm »
Hi, Darla:

I'm sorry you 'qualify' for our 'club' but here we are, all of us, so, welcome to the forum. 

I would urge you to try and put your recent diagnosis of having an acoustic neuroma tumor in context.  This condition is both rare and scary but the tumors are almost always benign (non-cancerous) and, best of all, treatable.   As other more knowledgeable folks have already commented, you can get through this, whether you end up with microsurgery or radiation, or both, as I did.  Of course, your specific situation may permit you and your doctor(s) to 'watch-and-wait'.  That is an option for some AN patients.  It wasn't for me. 

If your tumor size, placement and other factors require microsurgery, it likely won't last more than 8 - 12 hours, unless complications develop, which no surgeon can foresee until he or she is 'inside' your skull.  Hospitalization time is generally between 3 to 5 days.  Some of it will be spent in the ICU.  Radiation treatment ('Gammaknife', 'Cyberknife') - it's not really 'surgery', as no incision is made - is of shorter duration, and, of course, non-invasive, despite the misnomer 'knife'.  No matter what course of action you ultimately decide on, no reputable doctor will give you outcome guarantees (only statistical 'odds') but the mortality rate for microsurgery is almost nil and with an experienced neurosurgeon, your chances of coming through surgery without any major complication are good. 

I did.  I also underwent FSR (Fractionated Stereotactic Radiosurgery) as a planned follow-up to my retrosigmoid microsurgery.  The neurosurgeon removed as much of my large (4.5 cm) tumor as possible without damaging any important nerves.  The radiation treatments (very small doses, 5 days per week for 5 weeks, aimed at the remaining tumor, about 2.8 cm) were performed in order to kill the remaining tumor cells and prevent re-growth.  So, in effect, I had both surgery and radiation - and came through them both just fine, and I'm not young, although I'm otherwise healthy.  8 months post-op (4 months post -radiation) and I'm pretty much back to normal.  Oh, I experience a few lingering AN-related minor annoyances, but nothing that I can't deal with.  I am not on any medications.  I consider myself an AN 'success story'.  My neurosurgeon is thrilled with my rapid initial recovery (about 6 weeks). 

I'll be frank.  While your initial panic is typical (and quite understandable) -  it isn't really necessary.  However, we wouldn't want you to be lulled into any sort of complacency, Darla.  Having an AN tumor removed - by whatever method - does carry some long-term consequences. You may not ever be exactly the same, physically, that you were 'before'.  However, with an experienced team of physicians, general good health 'going in' and of course, a positive attitude and a family support system in place, as I had, you should be fine.  Yes, there really is life after a brain tumor.  :)  Myself and many of the other members and correspondents on this forum are living proof. 

I wish you all the best in the days and weeks to come. 

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.

Darla

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Re: New and Scared
« Reply #9 on: February 14, 2007, 06:41:32 pm »
Thank You everyone for your words of encouragement and website links to educate me further on this subject.  Just finding this forum and reading about your experiences has helped my mental state of mind.  I am much more in control of my emotions and I have to contribute that to the chance to talk with other people who have been there.  It is very apparent to me that there is life after AN and it can be a very good life.  This site has been a godsend to me NO DOUBT!

I do have a copy of my MRI films to take on my first consultation but I am not sure of how to get a copy of these to other doctors for review via the internet.  I will try to figure this one out.

A special thank you to Boppi.  You have truly helped to educate me in such a difficult time in my life.  I sincerely appreciate the time that you have taken to email me several times in the last week with information. 

I will be in touch after my appointment on the 27th of this month.

Thanks everyone for your support.  This is an awesome group of individuals.