Author Topic: Need HELP!!! New to the forum !!!  (Read 8550 times)

nancyann

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Re: Need HELP!!! New to the forum !!!
« Reply #15 on: April 10, 2008, 07:05:16 am »
Hello Shiva:  Radiosurgery can be done as long as the tumor doesn't get much larger - the 22mm part of it is getting there + you need to have the radiosurgeon look at her MRI re: the position of the tumor in the brain.   The only problem  with 'watch & wait' is if the tumor grows to approximately 3.0cm, they would not be able to do radiosurgery because after the treatment the tumor 1st swells, then begins to die.  So if you wait too long, then surgery will at some point be your only option.   Now, the guessing game is that some tumors grow so slowly it may never cause a problem, some may stop growing altogether, some may grow more quickly - there is a 'gamble' factor involved with 'watch & wait'.

Some people have very few symptoms until it is quite large, whereas others have balance problems, facial problems, vision, etc.   Everyone is different.

I hope this helps,    Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Mark

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Re: Need HELP!!! New to the forum !!!
« Reply #16 on: April 10, 2008, 10:44:46 pm »
Shiva,

I think you've put together a very thoughtful list of pros and cons on the radiosurgery opposed to surgery and India vs. the US as a place for treatment

I'll offer a couple of comments that you might want to consider

Cyberknife is available only in US (not yet in India) so this is an advantage

Actually CK is available in a number of locations in Europe and asia and the latter might be easier and less expensive than flying to the US. There are a number of machines in Japan and you can find the whole list at www.accuray.com

3) Post radiosurgery followup has to be done in US.

Not necessarily, Stanford treats people worldwide and follow up can be done by sending the MRI images and following up by phone and / or e-mail. When I was treated back in 2001, the gentleman being treated after me the same three days was from either India or Sri Lanka. His follow up was going to be done remotely with Dr. Chang.

I think all your other points have a lot of merit, but in terms of either treatment option, it is important not to loose sight of the value of a highly experienced treatment team where ever you have it done

Good Luck

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Shiva

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Re: Need HELP!!! New to the forum !!!
« Reply #17 on: April 11, 2008, 05:47:24 am »
Nancy/Mark,  Thanks for the suggestions & prayers.

Mark, Eventhough cyberknife is available in various locations in asia & europe, it is very tough to get Visa for her (since Indian citizenship) that has lot of procedures and takes a long time.
I accept your second comment.

Im gonna book my flights for 04/17 meanwhile there is a hindu community which came forward to help us. Iam going to have discussions with them this afternoon and see what they say...
For my mom Aged 65 (31-Jan-1943)
First MRI 02-Apr-2008, 16mm AP x 22mm ML x 16mm CC (about 2.2cm), Left ear deafness
LINAC (XKnife) - 04-Jun-2008, Apollo Speciality Hospital Chennai, India with Dr.L.Murugan (Neurosurgeon) & Dr.Ratnadevi (Radiologist).

leapyrtwins

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Re: Need HELP!!! New to the forum !!!
« Reply #18 on: April 11, 2008, 11:45:26 am »
Good luck, Shiva.
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

Shiva

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For my mom Aged 65 (31-Jan-1943)
First MRI 02-Apr-2008, 16mm AP x 22mm ML x 16mm CC (about 2.2cm), Left ear deafness
LINAC (XKnife) - 04-Jun-2008, Apollo Speciality Hospital Chennai, India with Dr.L.Murugan (Neurosurgeon) & Dr.Ratnadevi (Radiologist).

cherrypiper

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Re: Need HELP!!! New to the forum !!!
« Reply #20 on: April 15, 2008, 01:13:47 pm »
a good friend of mine had very similar size and age Shiva , he was 70 ish. Because of his age they decided on the gamma knife procedure as it doesnt "open" up the skull like micro surgery does.

Maybe you could bring that up to your ENT.
10 mm x 2.4mm surgery date 12/03/07

glad to be here

Suzy

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Re: Need HELP!!! New to the forum !!!
« Reply #21 on: April 15, 2008, 09:55:38 pm »
Shiva,

You are very lucky that you live in Maryland.  Johns Hopkins in Baltimore is one of the best hospitals for AN surgery. If you look on the Johns Hopkins website, you will find they are #1 in ear,nose & throat and #2 in neurology.  Your mom will need both types of doctors.   After extensive research for myself, I chose to have my AN surgery there and am glad I did.

Suzy

Shiva

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Re: Need HELP!!! New to the forum !!!
« Reply #22 on: May 14, 2008, 02:09:37 pm »
Guys.. I'm back...Sorry for the long gap...Hope everyone is feeling good.  I'm leaving to India coming 25th with my mom and a surgery has been planned (Translab) for her tenatatively on the 29th of this month @ Apollo Hospital, Chennai.  After several opinions, researches..we gave up radio surgery and opted for surgery. My mom is okay with the surgery.  Will update you guys from India.   Pls. pray for my mom.  I Love you all. See yu...

Shiva

For my mom Aged 65 (31-Jan-1943)
First MRI 02-Apr-2008, 16mm AP x 22mm ML x 16mm CC (about 2.2cm), Left ear deafness
LINAC (XKnife) - 04-Jun-2008, Apollo Speciality Hospital Chennai, India with Dr.L.Murugan (Neurosurgeon) & Dr.Ratnadevi (Radiologist).

Kaybo

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Re: Need HELP!!! New to the forum !!!
« Reply #23 on: May 14, 2008, 02:27:54 pm »
Good luck, Shiva.  We will keep you in our prayers.  Can you put that on the AN calendar for us?

K
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: Need HELP!!! New to the forum !!!
« Reply #24 on: May 14, 2008, 02:48:28 pm »
Shiva,

Good luck to your mom and I'll send prayers for both of you.  Have a safe trip and let us know how things are going when you can.

Lori
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.

leapyrtwins

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Re: Need HELP!!! New to the forum !!!
« Reply #25 on: May 14, 2008, 04:20:11 pm »
Shiva -

I will definitely pray for your mom.

Thanks for letting us know what's going on.  I'll be waiting for your update, along with everyone else.

Love ya, too.

Hang in there and be strong,

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

Debbi

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Re: Need HELP!!! New to the forum !!!
« Reply #26 on: May 14, 2008, 04:51:02 pm »
Shiva-

Your mom is definitely in my prayers.  I just had translab 2 weeks ago, and it was the right choice for me.  Your mom will be in my thoughts as her date draws closer and I look forward to reading your updates.  Let her know that we are all thining of her.

Debbi (two-weeks postie!)
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: Need HELP!!! New to the forum !!!
« Reply #27 on: May 14, 2008, 11:03:44 pm »
Hi Shiva,

Best wishes to your mom, and to you. The translab surgery is a good fit for her case; I expect it to work out well. When you have a chance, do let us know how it turned out. Take care,

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.

leapyrtwins

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Re: Need HELP!!! New to the forum !!!
« Reply #28 on: May 28, 2008, 10:01:43 pm »
Shiva -

the AN Calendar says that your mom is supposed to be having surgery tomorrow.  I hope all goes well for her.

I'll be thinking of her (and you also) tomorrow and in the days to come and praying for a speedy recovery.

Best wishes,

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

sgerrard

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Re: Need HELP!!! New to the forum !!!
« Reply #29 on: May 28, 2008, 10:45:38 pm »
Shiva,

I second that - here's hoping your mom's translab goes smoothly, and she has a good gentle recovery.

With the time zone difference, maybe it is already tomorrow in India?

Hope to hear from you soon.

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.