Author Topic: New in town  (Read 13062 times)

Dana

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Re: New in town
« Reply #15 on: February 07, 2009, 01:26:31 pm »
Cliff,
I think what many of us are saying is that we want to make sure you know you MIGHT have options, depending on size, location and symptoms.
Hang in there,
Dana
1.5 cm AN diagnosed June 2007.   GammaKnife July 19, 2007 at Univ. of Washington/Harborview GK Center, Drs. Rockhill, Rostomily. 
After yearly MRIs for 5 years, it hadn't died. So I'm now leaning strongly toward surgery.

Sue

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Re: New in town
« Reply #16 on: February 07, 2009, 06:18:13 pm »
Hi Cliff and welcome to the Forum,

Sounds like you are getting a nice cross section of advice.  One of the many frustrations with this disease is having to figure out the best option of treatment for you.  Unfortunately none of us has a crystal ball to see what our outcome would be with each treatment.  Would that we could.  So,  you have to look at your situation, your age, your basic gut instincts, your medical options for doctors and learn about the procedures and then come to some kind of decision.  Not easy, is it!  We sort of all wish there was just one way to treat this, but there isn't.  Some people don't get diagnosed until their AN is quite large, and then they usually have little options.  Since yours is small, you have options.  You have to hassle with military doctors, though, and I don't know how that works for you.  I mean, if you wanted to do CK with Dr. Chang at Stanford, would they let you do that?  Could you pick the doctors at HEI in Los Angeles if you wanted or do you have to go to a military hospital?  I'm just curious.

My nephew is in Hawaii at the moment.  He is in the Marines and is at Ft. Smith.  He will be leaving soon and is heading back to Okinawa, which he loves.  He likes the beaches there and doesn't like living in expensive Hawaii, so he is happy to return on Okinawa.

Anyway, I hope everything goes smoothly for you.  And, yeah, I think your combat days are over, which, as far as I'm concerned, is a good thing.  You certainly don't want to have to turn to somebody and say, What? after they have said, DUCK!.

Hang in there,

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!
Poet Lorry-ate of Goode

lori67

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Re: New in town
« Reply #17 on: February 07, 2009, 07:27:23 pm »


LORI  NAVY- - NASHVILLE ???????

Dan in Germany 

Dan,

That's exactly what I said!  Well, maybe a few more "colorful" words as well!  I'm still looking for the ocean around here!  What are the chances I'd marry a sailor and wind up living in Upstate NY and Nashville?

Lori - landlocked in TN
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.

Greengiant71

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Re: New in town
« Reply #18 on: February 10, 2009, 12:10:31 pm »
Well I have been doing my own research and reading about my options, I see my doctor tomorrow morning and after that we schedule surgery for next month.  I'm not sure if i will be able to leave island or not for surgery, military is picky in their own ways.  I have read about the other options of surgery since my tumor is small and i will bring it up to my provider here in about 45 minutes when I go to see him.  I guess my biggest thing is will I be able to continue to serve or not, from what i am hearing (no pun intended lol)  I will most likely get discharged because I can't hear anymore.  Be back later with more news... 

Cliff
PFC Green Cliff 2-25 AVN  DVN

Diagnosed:  Jan 2009 , Translab surgery 28 Apr 09.

ppearl214

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Re: New in town
« Reply #19 on: February 10, 2009, 12:30:03 pm »
Aloha Cliff and welcome! My bad for not chiming in sooner........ but good to have you here.

Well, honestly... I can't chime in any better than what has already been shared with you.  A small AN, such as your's, is definately a candidate for both, radiation and microsurgical.  Regardless of what you decide, we are here to support you.  there is a wealth of info here regarding all forms of treatment options... heck, there are folks here with AN's possibly larger than your's (since we don't know exact measurements of your's) that are in Watch/Wait... many doing so for years.  Either way, please take your time to do your research here. This is a wonderful place where true patient-to-patient support exists (ie: sharing of experiences, research, knowledge and watered down drinks).

glad to have you here... again, welcome.. and btw, I just ran out of Hawaiian Peaberry coffee, in case you spot some! Mahalo! :)

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

Greengiant71

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Re: New in town
« Reply #20 on: February 12, 2009, 12:05:28 pm »
Aloha,

Well again I saw another doc telling me the almost exact same thing I have heard so far about my options and all.   I did talk to my provider this week and I received bad news that I will be discharged from the service after rehab from surgery.  My tumor size is about 1 1/2 cm big from what I saw yesterday on the MRI with the Doctor. 


Cliff
PFC Green Cliff 2-25 AVN  DVN

Diagnosed:  Jan 2009 , Translab surgery 28 Apr 09.

kenneth_k

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Re: New in town
« Reply #21 on: February 12, 2009, 01:09:26 pm »
Hi Cliff.

I'm sad to hear you will be discharged from the service. I truly hope you will find something else meaningfull to do in your professionel life.
Not only do you have this disease to think about, but you also have to find another job. Bummer :(

At least the prognosis is good, and if the tumor is medium sized as yours, there is a very good chance that loosing hearing on one side and some balance as well will be your only problem. Please continue to search this forum and you will find lots of good answers to almost any question, and you will find a lot of positive angle stories.

I wish you good luck,

best regards, Kenneth.

Pooter

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Re: New in town
« Reply #22 on: February 13, 2009, 03:26:43 pm »
Bummer about being discharged after rehab.  As if you didn't have enough to worry about..  I'd like to re-emphasize that with that size, you should explore the option of radiation.  Typically the absolute cut-off (in most cases) is about 3cm, so you're well within the acceptable size limitation.. Now, it's just a factor of a) location of the tumor, and b) some people just want the darned thing out and radiation doesn't provide that option.. 

I wish you well in your quest for answers..  Keep us updated.

Regards,
Brian
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

Dan

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Re: New in town
« Reply #23 on: February 14, 2009, 07:02:46 am »
I am of course not a Dr but I don't understand how they know before surgery that they will have to discharge you.  Do you have that much hearing lose now.  There are alot of people that have surgery and have no more problems after surgery than before.

Dan in Germany
US Army Retired, age 51,  residing and working in Germany.
Retrosigmoid 21 Sept 07 left side 1.76cm AN, Prof. Mann, Uniklinik Mainz Germany

wendysig

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Re: New in town
« Reply #24 on: February 14, 2009, 03:11:52 pm »
Hi Cliff,

I'm sorry I'm late in coming to this thread -- I haven't been on much lately.  Welcome to this forum, I believe you have and will continue to find it a wonderful source of information, compassion and a good place to vent when you need to.  I'm sorry to hear that you have an AN that even more sorry that it is having such a huge impact on your life and career of choice.  With regard to treatment choice,  I know you got a brochure about the ANA, but if tiy don't already have it too, I would suggest you requiest the information packet they offer.  It is full  of information about what you are going through and treatment choices in very plain language which I found very helpfull and think you will too.  As many of my fellow forumites have already said, unless the location of your AN dictates otherwise, you are probably an excellent candidate for radiosurgery, if you are interested in it.  My AN was small and I had the option of radiosurgery, but for many reasons opted for surgery.  I had a very good outcome, but as you have heard from others, there are no guarantees, everyone's experience varies at least slightly.  Surgical outcome depends on the experience of your siurgeons, size and location of your tumor and how sticky it is.  Deciding on treatment is, in my opinion,  the most difficult part of this journey.  I wish you luck in making your decision -- please keep us posted.

Best wishes,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Dana

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Re: New in town
« Reply #25 on: February 21, 2009, 02:06:51 pm »
Hi again,
I'm sort of surprised that both doctors said that surgery was your only option.  My AN was 2.5 cm and I successfully had Gamma Knife.  Again, as everyone has noted, it depends on location and other things besides size;  on the other hand, because ANs are rare, many doctors don't have too much experience with them and think surgery IS the only option. 

Sorry to be so 'persistent' here, but I just want to make sure you get all the facts.  Many people on the Board have sent their MRI (on a CD) to House CLinic in Los Angeles, who will provide some advice free of charge.  I didn't do this, so I don't know specifics, but it's been mentioned many times on the Board.  House Clinic is highly respected and very experienced in treating ANs.
Take care,
Dana
1.5 cm AN diagnosed June 2007.   GammaKnife July 19, 2007 at Univ. of Washington/Harborview GK Center, Drs. Rockhill, Rostomily. 
After yearly MRIs for 5 years, it hadn't died. So I'm now leaning strongly toward surgery.

DE TOM

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Re: New in town
« Reply #26 on: February 22, 2009, 06:15:42 pm »
Hi Cliff,

I just underwent the surgery in May 2008.  I had a 1.7 cm AN on my left side.  Surgery was Thursday and I was discharged the following Monday evening.  As fas as the military I cannot answer any questions, but if you want to email back and forth I can share my experiences.

Best wishes

Tom
1.7 AN left side removed May 15th 2008
BAHA Implant December 2008

Greengiant71

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Re: New in town
« Reply #27 on: April 25, 2009, 12:45:24 am »
Hello again,

Its been a while and i have been busy working hard, my unit ships out soon for Iraq not to mention training missions before all of that.  anyhow..   I have been to the hospital numerous times now and have talked with my surgeon, I made the choice for surgery ( trans lab ).  I have waited for some time now for surgery and the time has come so quickly already, 28 April is my surgery.   I thank you all for the support and information I have received, I'll post again after surgery and let you all know how it went.   I'll be in the hospital for a week after surgery and the I'll be on convalescent leave for about 30 days there after.

Cliff
PFC Green Cliff 2-25 AVN  DVN

Diagnosed:  Jan 2009 , Translab surgery 28 Apr 09.

suboo73

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Re: New in town
« Reply #28 on: April 25, 2009, 04:34:16 am »
Cliff,  Hello again, and i am glad to see you are posting on the Forum!
May i suggest you put your surgery date on the AN Calendar?
Here is the link: http://www.my.calendars.net/AN_Treatments
I can do if for you if you like, just let me know.

I remember reading your story before and was hoping that you wouldn't have to give up your career because of the AN....
But people change careers all the time, so onward and upward with the new challenge!

My thoughts and prayers are with you during your surgery and post op next week.
Will anyone post an update for us on the Forum?  If there is someone who can send me an e-mail, i will be happy to post for you.
You can find my e-mail address under my profile.

May God watch over you next week.
Sincerely,
Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

Dan

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Re: New in town
« Reply #29 on: April 25, 2009, 08:40:43 am »
Cliff,
Good to here from you again, and to here that you have a date not to far out.
GOOD LUCK!!

Dan in Germany
US Army Retired, age 51,  residing and working in Germany.
Retrosigmoid 21 Sept 07 left side 1.76cm AN, Prof. Mann, Uniklinik Mainz Germany

 


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