Author Topic: Need HELP!!! New to the forum !!!  (Read 8547 times)

Kaybo

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Re: Need HELP!!! New to the forum !!!
« Reply #30 on: May 29, 2008, 07:03:23 am »
Shive~

I was thinking of y'all too -- prayers coming your way!!

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!

Shiva

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Re: Need HELP!!! New to the forum !!!
« Reply #31 on: May 29, 2008, 01:34:29 pm »
HIIIII  Guys...

Hope u r all doing gr8.  We reached chennai (India) last tuesday 27th around 4.30am & guess what.. Before I give u an update abt my mom.. folks...I have to tell u a small terrific experience we had.

We started from Dulles Washington Airport On sunday 25th around 10.00pm (Eastern time) in British Airways to London and got connecing flight to chennai on Monday 1:00pm (london time). Its about 10.5 hrs journey from London to chennai.  It would have been around 4.5 hrs of travel time, the captain spoke to us telling the flight would be landing in Abu Dhabi (saudi arabia) as there is a technical fault (hydraulic failure) in about 2.5 hrs time from now. All videos/maps on the TV are blank..Some people were still sleeping and others playing and eating...my mom looked panic at me.. I said it should be fine...I spoke to one of the crew member and he said its a very minor problem and they should fix it very quickly and they will arrange for stay & everything @ abu dhabi. I felt good and told my mom we could see abu dhabi... We were just waiting for the landing... After 2.5hrs, the captain spoke again and said that he did contact BA engineers in london and as per them the captain would fly the plane to chennai & not abu dhabi. My mom felt happy (thought the problem was resolved) but I was little concern and was making trips to the tail end to see if I get any information. Because we know there is a technical fault and its better to fix and fly rather than flying for another almost 4.5hrs. The anxiety was killing me. One of the passengers said that the instructions from london is to fly the plane to chennai is to consume the fuels ??!!@@ which made me think.. is it gonna be emergency/crash landing??? and guess what Yes it is....

About 1.5 hrs before landing to chennai the seat belt sign is on...crew were running here & there.. we started hearing strange suction noise from under the plane belly...(when asked one of the crew..he said its coming from the toilet suction pump..blah...blah...). The captain was talking...said the noise is bcas there is no hydraulic fluid and they are abt to shutdown the mechanic pump and the noise should go off...the crew would be instructing us the safety procedures and everybody to be very very attentive to that...

About  1.0 hr before landing..the crew started teaching each & every individual on the plane on how to get on to the emergency position (brace brace) and pull the oxygen and slide on the door way etc... Now everybody started panicking, praying and crying...Captain says..we are trying our level best for a safe landing attempt... Moment of silence for the next 40 minutes....Some trying to get their important stuffs from their bags...

About 20 minutes before landing... the plane started decending from roughly 22,000 feet (No map yet) slowly... we could see the runway and we could hear the pilot is trying to bring down the nose wheels...he is making attempts...flight goes 2nd round the runway...3rd....4th....and its moving dead slow...its past 35 minutes of scheduled arrival....and finally captain tells...attempting landing....brace brace....everybody goes in the position shouting brace brace...we hear a THUD THUD ...sound....that's it.. the plane lands but no brakes & since the speed was very very slow...it runs runs and stops almost at the edge of the runway....we see fireengines, ambulances running across....the pilot shuts off the engine and after abt 30 minutes.. it gets towed away to the terminal....VOW..finally we arrived safely....& next day...this was in the local newspaper (incorrect information though) . Here is the link : 

http://www.chennaionline.com/colnews/newsitem.asp?NEWSID={24BD807D-305B-4A5B-B930-ABCB9BB8C9D7}&CATEGORYNAME=CHN

Now coming to my moms case :

We met the doctor the next day, consulted the neuro surgeon and the also radiology group (for more than 3 hrs) and now looking @ the tumor..they say X-knife would be a better option than translab surgery. They have moved our appnt for radiosurgery for the 4th (coming wednesday). We got confused and just today we went to another neuro specialist and he says...surgery...Now we are totally confused once again. We are getting one more opinion tomorrow and we will be deciding either surgery or RF by tomorrow.. Fingers crossed....

Will update u more ASAP....

Shiva
If RF, it will be on 4th
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).

Debbi

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Re: Need HELP!!! New to the forum !!!
« Reply #32 on: May 29, 2008, 01:43:18 pm »
Shiva-

First of all - what an AMAZING story!  You and your mom must have been terrified - I can't even imagine what they must've been like.  Now, the optimist in me says that this surely means that your mom will come through treatment with flying colors because surely she has God and luck on her side!   :)

Although I know it is confusing, it is kind of good to know that your mom does have options.  I don't know how the medical system there works - but it seems to me that if you need a bit more time to make a decisoin between surgery and RF, they could give her another later date for the RF.  She shouldn't feel that she is being rushed into anything - this is a big decision.  Can you ask the surgeon who said translab why he is so certain that is the only option? 

I am keeping my fingers crossed for you and your mom - keep us all posted, okay?

Debbi
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

Jim Scott

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Re: Need HELP!!! New to the forum !!!
« Reply #33 on: May 29, 2008, 03:21:29 pm »
Hi, Shiva:

After reading your account of the flight to India (that must have been scary for awhile), I'm just pleased to learn that you and your mother are safe and sound in Chennai.  We'll be thinking of and praying for your mother on June 4th, if that date for radiosurgery holds.

I'm sorry you and your mother had to revise your plans (for surgery) and make this difficult decision all over again.  I only wish we could tell you what is best for your mother but we all know that is impossible.  So, I trust that you'll use the knowledge you've gained from this site and elsewhere as well as your own good judgment to come to a treatment decision both you and your mother can feel confident is best for her. 

I'll bet you won't be making airline reservations anytime soon - unless they include a parachute!   ;D

Seriously, Shiva, please keep us informed as to what is ultimately decided for your mother's AN treatment.  We care.

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.

leapyrtwins

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Re: Need HELP!!! New to the forum !!!
« Reply #34 on: May 29, 2008, 03:47:40 pm »
Shiva -

I didn't expect to hear from you so soon. 

What an amazing airplane adventure you and your mother had.  Thank goodness everyone was okay and that the landing turned out so well.  It sounds like it could have been much worse.

The information you and your mom have received regarding her best treatment option is confusing, but I'm sure you two will be able to sort it all out and do what you feel is best for her.   

Please let us know her final choice.

My best to both of you,

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 #35 on: May 29, 2008, 08:17:45 pm »
Shiva,

That is an amazing story. You won't be able to top that one for a while.

If I remember right, both radiation and surgery were good choices for your mother's case, so either way, it should work out fine. It certainly can be confusing trying to decide which doctors to listen to. Hopefully you will be able to sort it out soon.

I glad to hear that you have landed safe and sound in Chennai, even if you did make it into the news while doing so. Best wishes for a successful trip and a safe return.

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.

oHIo

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Re: Need HELP!!! New to the forum !!!
« Reply #36 on: May 29, 2008, 09:02:46 pm »
Shiva,

I broke out in a sweat just reading your airplane adventure.  I am glad you are safely on the ground and facing something where you and your mother can have more control. 

Making a decision about treatment can be confusing.  Doctors will give you their opinion, based on their experience and personal bias.  It is you (actually your mother) who must make the decision, based on your research and comfort level. 

I hope you get answers that leave both of you feeling at peace with your treatment decision.

Shiva

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Re: Need HELP!!! New to the forum !!!
« Reply #37 on: May 31, 2008, 03:34:53 am »
Guys,

We have decided. Its GAMMA KNIFE for the 4th of June. She gets admitted on the 3rd and treatment is on the 4th (Just singe shot).  Will keep u guys updated and sincerely thank u folks for ur prayers & wishes.

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).

cmp

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Re: Need HELP!!! New to the forum !!!
« Reply #38 on: May 31, 2008, 06:43:08 am »
Shiva--

What a terrifying experience you and your Mom had (my knuckles turned white gripping the keyboard as I read it...  ;)) I'm so glad to hear that you landed safely and easily after all, and especially glad to hear that your Mom has decided on a treatment method and has a date for the procedure!

Healing thoughts and wishes coming your way for a wonderful result next week for her!
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!

lori67

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Re: Need HELP!!! New to the forum !!!
« Reply #39 on: May 31, 2008, 09:28:30 am »
Shiva -

Oh my goodness!  I can't imagine what it must have felt like on that plane!  I am sure you and your Mom have someone watching over you.  I'm so glad you're safe and sound.

I'm also glad there is a plan in place for your Mom's treatment and you're both doing well.  Keep us posted.  And try to avoid any more adventures!

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.

Jim Scott

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Re: Need HELP!!! New to the forum !!!
« Reply #40 on: May 31, 2008, 01:02:11 pm »
Hi, Shiva:

I've added your mom's GK treatment to our calendar.  She'll have lots of good thoughts and prayers going out to and for her on June 4th.

Please keep us informed as to how it goes, which, I trust, will be very well.  :)

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.

leapyrtwins

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Re: Need HELP!!! New to the forum !!!
« Reply #41 on: June 01, 2008, 02:43:21 pm »
Shiva -

thanks for letting us know your mom's GK has been scheduled.

Good luck to her on the 4th  :)

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