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Author Topic: Back from first appointment  (Read 2747 times)

Anomar11

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Back from first appointment
« on: July 28, 2008, 10:07:54 am »
Hi All,
I've had first consult at Mayo.  I last posted here approx. 7 weeks ago, and the responses I received helped calm me and get some perspective.  I have checked in now and again, but needed to keep a bit of distance as well.  My thoughts and prayers have been with all undergoing treatment and making decisions.  I am a candidate for radiosurgery and will go that route.   I saw 2 MD's Driscoll otolaryngologist, and Link neurosurgeon also radiosurgery.  Neither tried to convince me to have surgery.   They work as a team, and do alot of these.  I feel my brain would be in excellent hands with Dr. Link, as he is very experienced with gamma as well.  Everyone stated the importance of experience if I chose to go elsewhere.  Dr. Driscoll was good at explaining, seemed down to earth - told me there was no right or wrong - to go with my gut and move forward.  I'd like treatment mid Sept.  I need to get my daughter situated at college 9 hrs away. (Where I live, about everything's at least 8 away  :))I'm still investigating CK, wishing I could find an experienced Center in midwest.  There is one in St. Paul, MN, but their main bag seems to be aneurysms.  I'll check it out, but am leaning strongly toward Mayo.  The experience thing makes sense to me.
Take care.  Mona
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L An diagnosed 5/08 2.0 x 1.1 x 1.3 cm.  Cyberknife Stanford Drs Chang and Gibbs Nov '08.  One yr: 2.1 x 1.4 x 1.6, Two yr: 2.2 x 1.5 x 1.8, Three yr: 1.9 x 1.5 x 1.5, Four year 1.6 x 1.1 x 1.1, Six yr: 1.4 x .7 x .9

Kaybo

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Re: Back from first appointment
« Reply #1 on: July 28, 2008, 11:14:57 am »
Mona~
Glad you have made a decision on treatment choice - I'm sure that helps!

K
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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!

lori67

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Re: Back from first appointment
« Reply #2 on: July 28, 2008, 11:34:07 am »
Mona,

Glad your appointment went well and you have a plan.  That's good that you found an experienced doctor that you are comfortable with.  I'm sure you'll do well!  Keep us posted!

And I just had to let you know,  I usually try to figure out what people's screen names mean, and I think I just figured yours out...your name backwards?  Ok, I'm sure everyone else already figured that out by now.  What do you expect from someone who could only come up with "Lori67"?

Lori
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Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Kaybo

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Re: Back from first appointment
« Reply #3 on: July 28, 2008, 11:44:10 am »
Lori~
I hadn't thought about that one so I hadn't figured that out.  Have you deciphered mine yet?  It is a toughie...

K
Logged
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!

lori67

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Re: Back from first appointment
« Reply #4 on: July 28, 2008, 11:58:43 am »
Yes, your real name is "Obyak" - right?   :D

Oh, I feel a hijacking coming on...  tsk, tsk..
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Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Jeanlea

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Re: Back from first appointment
« Reply #5 on: July 28, 2008, 12:00:09 pm »
Hi Mona,

Happy to hear that your appointment at Mayo went well.  Have you checked out St. Luke's in Milwaukee?  They do CK there.  
Where is your daughter going to college?  I'll have two children at MSU this fall.

Jean
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translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

ppearl214

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Re: Back from first appointment
« Reply #6 on: July 28, 2008, 12:06:19 pm »
Quote from: lori67 on July 28, 2008, 11:58:43 am

Oh, I feel a hijacking coming on...  tsk, tsk..

*smack*

try again!  I'm watching...... ;)  :-*

Mona, sounds like things are falling into place for you.. and I'm tickled to hear that.  I'm not sure about out your way but if CK is being considered, pls check the Accuray website (www.accuray.com) to find a CK center for the area you seek.

Continued wellness to you!
Phyl
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leapyrtwins

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Re: Back from first appointment
« Reply #7 on: July 28, 2008, 12:13:24 pm »
Boy, Phyl is being nasty to hijackers today  :o

So, I'll just stick to the topic at hand  ::) 

Mona -

glad you have made a treatment decision - in my experience, it was one of the harder parts of having an AN.  Hope everything goes well with the radiation.

When you get some definite dates, please put them on the AN treatment calendar.  You'll find a link under Steve's (sgerrard's) profile.

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

cmp

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Re: Back from first appointment
« Reply #8 on: July 28, 2008, 12:32:28 pm »
Mona--

It's great to hear that you have a treatment decision you're comfortable with, and are finding doctors you have confidence in as well. The most stressful stage in the AN journey, I think, is the time between diagnosis and treatment plan decision, and now you've got that safely under your belt!

BTW (assuming Lori has cleverly and correctly decoded your screen name), my daughter's name is Ramona, too, and her nickname is Mona! (And I thought she was totally unique in that!)

Best wishes, and I look forward to hearing the final specifics of your decision!

Carrie
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5 cm AN surgery, Shands Hospital, FL, Dr Albert Rhoton, 1988; VII-XII anastamosis for right-sided facial palsy 1989; diagnosed Feb 2008 w/ 1.8 cm recurrence; drs McKenna & Martuza; surgery rescheduled for 6/24/08!

Kaybo

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Re: Back from first appointment
« Reply #9 on: July 28, 2008, 03:46:39 pm »
Lori~
Isn't it kind of ironic that my regular name backwards is "YAK" and that is what I love to do... ;D

K
Logged
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!

Jim Scott

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Re: Back from first appointment
« Reply #10 on: July 28, 2008, 03:57:57 pm »
Mona:

Thanks for updating us on your progress in deciding on a mode of treatment, a facility and doctors.  This is always a serious and often difficult decision with huge ramifications so I believe Dr. Driscoll was correct in advising you to 'go with your gut'.  Experience is always a crucial factor, too.  AN surgery is very delicate and only years of experience can give a surgeon the skills he needs to do his best work on a medical problem (Acoustic Neuroma) that isn't common and that many neurosurgeons simply don't have much experience with. If you're able to find a convenient facility and go with CK instead, that might be just as efficacious for your AN condition. 

I wish you success in your search and in the results of whatever treatment you choose. 

Jim

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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.

Anomar11

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Re: Back from first appointment
« Reply #11 on: July 28, 2008, 06:07:45 pm »
Thanks so much to everyone for the well wishes.  You guys are a bunch of characters with the name thing.  My given name is Ramona - figure it's a name you can grow old with, but I'm not there yet  ;D. 
Jean, my daughter is going to Western MI.  It's nice your girls are going together. 
Phyl, I have looked at the accuray site, but it seems like the ones in my neck of the woods are farily new.  Short of getting in a car and traveling 950 miles plus to see Dr. Medberry - (he's likely the closest of the more experienced ones noted by folks on this site), my comfort level isn't there.  I may look into St. Lukes, Milwaukee per Jean's suggestion. 
I'll keep you all posted.
Thanks again,  Mona
Logged
L An diagnosed 5/08 2.0 x 1.1 x 1.3 cm.  Cyberknife Stanford Drs Chang and Gibbs Nov '08.  One yr: 2.1 x 1.4 x 1.6, Two yr: 2.2 x 1.5 x 1.8, Three yr: 1.9 x 1.5 x 1.5, Four year 1.6 x 1.1 x 1.1, Six yr: 1.4 x .7 x .9

Melissa778

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Re: Back from first appointment
« Reply #12 on: July 29, 2008, 06:11:28 am »
Mona,

I had my surgery about 10 weeks ago in Southfield, MI with Dr. Jack Kartush from the Michigna Ear Institue.  They have several docs there that are very experieinced with AN's.  I know MSUScottie and Lacey both have been treated there as well.  THey are wonderful there, and I had a great outocme.  THey also assit in gamma knife, i'm not sure abotu ck though.  www.michiganear.com/index_real.html here is a link to there website if you're at all interested.  Not sure if they would be way out of the way for ou, but as I said they are wonderful!!

Melissa
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1.6cm X 1.6cm diagnosed Jan 30 2008
Translab Surgery scheduled for May 15th with Surgery went well, got ALMOST all of it.
GK to zap the rest on 10/22/08
2010 MRI showed no new growth tumor measuring at that time at 1.1 x .4
2011 Holding steady
2012 new growth 1.7 x .7 :( :(

Anomar11

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Re: Back from first appointment
« Reply #13 on: July 29, 2008, 07:02:41 pm »
Melissa,
Thanks for the info re: MichiganEar.  I have looked into them, and know they are excellent.  It is my understanding though that they don't do CK but recommend GK.  Glad you're doing well.  Mona
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L An diagnosed 5/08 2.0 x 1.1 x 1.3 cm.  Cyberknife Stanford Drs Chang and Gibbs Nov '08.  One yr: 2.1 x 1.4 x 1.6, Two yr: 2.2 x 1.5 x 1.8, Three yr: 1.9 x 1.5 x 1.5, Four year 1.6 x 1.1 x 1.1, Six yr: 1.4 x .7 x .9

Pooter

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Re: Back from first appointment
« Reply #14 on: July 29, 2008, 07:50:50 pm »
I concur with the well wishes and the fact that you've chosen a treatment option.  I can't really help with finding a CK place near you since I'm nowhere near you and I had surgery a few months ago.  ;)  Congrats on your decision!  That's the hardest part for some...  Continued success!

Brian
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Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager
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