Author Topic: Where do I start?  (Read 9978 times)

Jim Scott

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Re: Where do I start?
« Reply #15 on: April 20, 2008, 02:21:00 pm »

I don't know how many doctors who treat ANs do both radiation and surgery, but I wanted to point out that I know at least two who do.

Jan

Just popping in to add that my neurosurgeon works closely with a radiation oncologist when treating AN patients. They respect each other's medical discipline and worked as a team on my AN case.  The neurosurgeon used the retrosigmoid approach surgery and employed nerve monitoring (he flew in an out-of-town specialist).  My 4.5 cm AN was 'debulked' (down to 2.5 cm).  Then, he worked closely with the radiation oncologist to 'map' my FSR, using 'fresh' MRI and CT scans,  The result was very satisfactory.  A rapid recovery from the surgery (with no real complications), then, 3 months later, as previously scheduled, 26 FSR treatments (5 weeks) that caused me no side-effects or any real discomfort.  Within a year, the AN has shrunk and shows signs of necrosis (cell death).  Both doctor and patient are elated .  :)

I highly recommend seeking a doctor that, even though he specializes in neurosurgery, is open to whatever is most efficacious for the patient.  A fellow Connecticut resident with a small AN (that used to post on these boards) that I referred to my neurosurgeon, was impressed when my doctor looked at his MRI and, because he had a small AN, referred him to my radiation oncologist, even taking the trouble to personally escort this fellow down to the radiation oncologists office for an impromptu appointment. This is the kind of surgeon who really has the patients interest at heart and isn't fixated on performing his specialty on every AN patient that comes through his door.  I consider myself blessed to have this kind of neurosurgeon.  I wish every AN patient could find a doctor like him in their area.  I'm sure many such doctors exist, but sometimes they're hard to find.  I hope 'JFT" finds one. 

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.

Debbi

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Re: Where do I start?
« Reply #16 on: April 20, 2008, 02:46:31 pm »
Hi JFT-

I'll pretty much ditto what others here have said. As you can see, I am scheduled from translab in less than 10 days.  One of the things to ask your doctors is what THEIR statistic on facial nerve damage with translab is.  This was a big concern for me, so one of the things I was looking for was the lowest statistic (my docs quoted about 2% risk, which was acceptable.) 

I share your shock about losing the hearing.  My first consult was via phone with House Ear Clinic in LA and when they told me I'd lose hearing in that ear it was quite a shock.  Then each other doctor I spoke to validated that translab was still my best option given location of the tumor.   However, I am at peace with that now (of course, feel free to check back with me in a couple of weeks on that!  ;))

Give yourself time to digest each new bit of information, and ask questions, questions, and more questions. 

Let us know how your journey progresses.

Debbi - counting down in NJ...
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

sgerrard

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Re: Where do I start?
« Reply #17 on: April 20, 2008, 08:32:02 pm »

I just wanted to add a little to Steve's post.
I don't know how many doctors who treat ANs do both radiation and surgery, but I wanted to point out that I know at least two who do.


Hi Jan, thanks for catching me on that. As a matter of fact, my own ENT does surgery, and recommended I look into radiation (see Jim's post for another example); and on top of that, I had my radiation treatment with Dr. Chang, who is a neurosurgeon himself, working with Dr. Gibbs and other radiation oncologists at Stanford. So you are right, there are some good ones out there, and some good teams.

I guess I was just reacting to another possible example of the "of course you must have surgery" view that does still come up fairly often. The balanced view of the options is the way to go.

So you can ask that house painter about new siding, as long as he knows something about siding, and knows a good siding guy.  :)

Steve

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.

Melissa778

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Re: Where do I start?
« Reply #18 on: April 21, 2008, 06:29:49 am »
I am form the Toledo, OH area and have seen Doctors at U of M and at Cleveland Clinic and I have opted to go translab with Dr. Jack Kartush at the Michigan Ear Institute (Southfield, MI).  I highly recommed him and his group.  The all were wonderful when I went for my consult.  He has many years experience and over 1000 surgeries.  He helped create a tool used during surgery to help monitor the facial nerve to help prevent surgical damage to the facial nerve.  He is a wonderful man.

http://www.michiganear.com/index_real.html

My AN is right sided, 1.6-1.8 cm depending on what doctor you talk to :)  I have come to accept the SSD I will be left with.  I only hope and pray everyday that everything facially stay "intact", I currently have some facial twitching and things, which is why I have decided on surgery sooner than later.......24 days and counting :)

Best of luck to you......

Melissa
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 :( :(

JFT

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Re: Where do I start?
« Reply #19 on: April 21, 2008, 09:10:51 pm »
I just wanted to thank everyone for the feedback and encouragement about my situtation... I feel everything happens for a reason and I'm going to keep my chin up!  ;D

I have a question... Is it normal to feel the pain in the neck, twitching in the face and all that kind of thing?  now that I know what is going on?

JFT

leapyrtwins

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Re: Where do I start?
« Reply #20 on: April 21, 2008, 09:17:46 pm »
JFT -

I, too, believe everything happens for a reason.

As with most things AN, everyone is different.  What is "normal" for some, might not be experienced by others.  But my guess is that the pain in the neck and the twitching in the face are normal.

Hang in there,

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

lacey7

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Re: Where do I start?
« Reply #21 on: April 29, 2008, 09:48:18 pm »
Hi JFT,
Check out the website MichiganEarInstitute.com
It's located in Farmington Hills, MI.
It's supposed to be the #2 place in the U.S., with #1 being the place in Calif.
I live in MI also, and at this place, it's all they do.  They have 6 surgeons there.
I've been to U of M for rheumotolgy, and it's a great place.....but I think for something like this, I feel better going to Michigan Ear.
Hope I have helped you.  My surgery is in June.
Lacey
Diagnosed 4/15/08.
AN - 1.4 cm.  Translab surgery 6-26-08.  SPF leak 7-5-08, and went back into surgery 7 -6-08.
SSD left side, after surgery
Dr. LaRoure - Providence Hospital, Southfield, MI.

Melissa778

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Re: Where do I start?
« Reply #22 on: April 30, 2008, 08:31:45 am »
Lacey,

Congrats!  Please PM me and let me know how you finagled gettign in to see Dr Laroue.  I'm so happy for you.  I bet you feel a weight has lifted......Congrats!

There seem to be quite a few of us Ohio/Michigan AN'ers becoming "posties"......we need to schedule a "postie" luncheon sometiem in the future!  Ohio?  Ohio Also?  Are you game :)

Melissa
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 :( :(

Mama R

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Re: Where do I start?
« Reply #23 on: April 30, 2008, 02:40:04 pm »
I am game for a luncheon. I am now driving so we could meet before your surgery, Daydreamer, If you would like. I am not available May 7,8, or 9th but open any other date. I am from the Stow, Akron, area..I do not think Ohio is driving yet. She is from Cincinnati...So we may want to wait. I am game for whatever!
Translab U of Cinnci - 03/21/08
Dr Theodosopolous & Dr Pensak :)
1 cm

oHIo

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Re: Where do I start?
« Reply #24 on: April 30, 2008, 05:59:49 pm »
Melissa,
I'd love to have a get together at some point.  I am not driving and not sure I'm close to yet.  I'm at the mercy of my family and friends to transport me to my daily appts.  Still seeing ophthalmology and only have one eye for now.  I planned on having some "free" time, but the docs and vestibular rehab are eating my days away.

Let me know when and if you all have a get together and I can't make it, we'll have to have another one  ;)  Good excuse to keep scheduling them.

oHIo

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Re: Where do I start?
« Reply #25 on: April 30, 2008, 06:10:43 pm »
Jan,
Those of us in Ohio and Michigan are thawing out from the winter and our ANs are springing up, thus the recent increase in Ohio and Michigan ANs.   ;D

Okay, it sounded pretty good, but actually I was diagnosed last summer.  Part of my decision not to have surgery over the winter months was because of the weather and ability to rehab/walk/go to appts. without breaking my neck on the snow/ice. 

Our good neighbors to the north (northern Ohio and Michigan) know how to drive in the ice and snow.  Cincinnatians can't drive in the rain.  (No flames please, I'm a native Cincinnatian and invite anyone to visit during a nice spring rain to see what I mean.)  It is pathetic. ::)

leapyrtwins

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Re: Where do I start?
« Reply #26 on: April 30, 2008, 08:03:46 pm »
Jan,
Those of us in Ohio and Michigan are thawing out from the winter and our ANs are springing up, thus the recent increase in Ohio and Michigan ANs.   ;D

Well, if that's the case, one of these days we'll be adding more people from Illinois - that is, if the weather will ever cooperate  ::)

Just had huge snow flurries on Monday afternoon, then today it got past 60 degrees.  Go figure!  Chicago weather - got to love it  ;D

BTW, we can all drive in bad weather in Illinois - we get lots of experience!

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