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Author Topic: Ending a self imposed silence  (Read 5388 times)

Richard in Palacios

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Ending a self imposed silence
« on: September 23, 2009, 10:24:42 am »
I have been remiss in not posting for the last many months.  I'll try to explain later in this message.  First the good news.  If you remember, I was doing the watch and wait thing until my AN doubled in size between yearly MRIs. Having done my research during those 2 watch and wait years, I placed myself in the hands of DR. Vrabeck (neurosurgeon) and Dr. Teh (radiation oncologist).  Together we decided that the Stereotactic Radio Surgery via the LINUX system was my best option.  The procedure was performed in June of 2008.  Other than the pain from the screws attaching the frame to my skull, the procedure was straight forward.  I'l try to post that experience over in the treatment options section of the forum later  The one year later MRI showed "no growth" in the tumor.  A best possible outcome.  Soon after that news,I begin to sufer from became a crippling neuropathy. I had such extreme pain in the feet and legs that I became wheel chair bound as well as losing most of the use of my hands.  After a rather ardous search for a neurologiast who knew something I finally found one (he was #5) who was willing to take the time to do the necessary tests to make a diagnosis.  After a spinal tap, 4 musce bopsies, and a nerve bopsiy he had a dignosis and a treatment plan for what we then knew as "vasculitis".  I have completed the first 4 months of a chemotherapy regieme agumented with huge amounts of steroids.  I have two months to go.  I have regained most of the use of feet and legs and am begining to get my hands back as well.  It has been an interesting year.  Hopefuly, more later.
Richard 
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Was AKA "RED in Palacios". That account now inactive. Originally diagnosed in 10/06 9mm X 3.6mm Waiting and watching.
As of 4/08 15mm X 6mm.  No longer waiting and watching.  Had SRS 6/10/08 at Methodist Hospital in Houston

Kaybo

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Re: Ending a self imposed silence
« Reply #1 on: September 23, 2009, 10:39:30 am »
WOW!  You have been thru the ringer!  So glad that you were able to finally find a Dr and more importantly, that you begin to regain use of your legs and hands!!  Keep us updated as you can...

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!

ppearl214

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Re: Ending a self imposed silence
« Reply #2 on: September 23, 2009, 01:01:14 pm »
Richard! Oh, my... how terrific to see you back. You have been missed.  You've been here almost as long as me and I'm thrilled to get an update on you.  We all need a break from the AN journey every now and then and glad you decided to peek back here and say hi.

I am SO sorry to hear you have had such a rough time. As one with numerous neuopathy issues, I can well relate to many issues you have come across and tickled you are doing better now. Please don't be such a stranger.... and please keep us updated on how you are doing. I'm cheering you on, as always! :)

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

followingHim

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Re: Ending a self imposed silence
« Reply #3 on: September 23, 2009, 01:29:44 pm »
It is good to see you posting Richard.  I hope you will post when you can.

Blessings

followinghim
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Jim Scott

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Re: Ending a self imposed silence
« Reply #4 on: September 23, 2009, 02:15:17 pm »
Hi, Richard ~

It's good to see you posting again and more importantly, to learn that your radiation and recovery went well and, although you went through an arduous time dealing with neuropathy as a result of what you now know was vasculitis, treatment appears to be effective and you're recovering from that, too.  Two significant victories and well worth a visit to the ANA forums.  Welcome back!

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.

nancyann

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Re: Ending a self imposed silence
« Reply #5 on: September 23, 2009, 05:42:37 pm »
Richard:  so glad to hear you're healing ! !  That must have been awful when it happened, jeez louise...
Always good thoughts,  Nancy
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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

Keri

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Re: Ending a self imposed silence
« Reply #6 on: September 24, 2009, 06:42:24 am »
Hi Richard,
I'm so glad your found a good neurologist that came up with a treatment plan. What a fight you've had (and are still fighting). Thank you for updating and letting us know how you're doing and what's been happening.
I wish you well on your remaining treatment.
Keri
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1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

leapyrtwins

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Re: Ending a self imposed silence
« Reply #7 on: September 24, 2009, 06:50:26 am »
Richard -

it's great to hear from you and also great to hear that your MRI showed no growth. 

However, I'm sorry about your health problems.  My mom has neuropathy and one of my sisters has vasculitis, so a know a tiny bit of what you've been going through.

Hang in there, and as Phyl said, don't be a stranger; we missed you!

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

msmaggie

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Re: Ending a self imposed silence
« Reply #8 on: September 24, 2009, 06:01:27 pm »
I am so sorry that you have suffered so much, and am also relieved to hear that you seem to be on the rebound.  You will be in our prayers for continued improvement.  God bless!

Priscilla
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Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

Brendalu

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Re: Ending a self imposed silence
« Reply #9 on: September 24, 2009, 07:38:19 pm »
Richard,
So glad that your MRI results were good.  Sounds like you have taken the bull by the horns and are doing the best possible treatments for your other problems.  I will continue to keep you in my thoughts and prayers and am sending positive energy your way.  Keep us posted on how you are doing.
Brenda
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Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

Richard in Palacios

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Re: Ending a self imposed silence
« Reply #10 on: September 28, 2009, 11:27:36 am »
Thanks to all of you for the kind and encouraging words.  It has been quite a jourey to this point.  If nothing else, I can now advocate that anyone facing various treatments have a team in place and insist that you are informed with all your options openly discussed.  Do your own reasearch and be as informed and stuborn as necessary to find the approach that you believe is right for you and your condition.  I was very fortunate to have the time to do my reasearch related to the treatment of my AN.  I actually read many of  the articles published by the team members I finally selected.  Yes it was tedious but so worth it when the treatment begin.  Going into treatment from a position of knowng what was happening and why put me a position of strength as far as what was done for me.  Knowledge truely is power.  My battle with the vasculitis really did not give me te luxery of time as the AN did.  I did my homework on the fly so to speak.  The first two neurologists that ran me through the test mill found no sigifigant findings.  I knew something was wrong and pushed my way through the  the additional referrals to get to someone who knew and recognized the issues.  It ws ugly at tmes but so worth it in the end.
Richard
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Was AKA "RED in Palacios". That account now inactive. Originally diagnosed in 10/06 9mm X 3.6mm Waiting and watching.
As of 4/08 15mm X 6mm.  No longer waiting and watching.  Had SRS 6/10/08 at Methodist Hospital in Houston

lori67

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Re: Ending a self imposed silence
« Reply #11 on: September 28, 2009, 11:35:17 am »
Richard,

Holy cow!  What a bumpy road for you!  I'm glad to hear you're on the mend.  It must have been a scary and frustrating thing to have to go through.

Glad you're back and I hope you continue to get better and better!

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.

CHD63

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Re: Ending a self imposed silence
« Reply #12 on: September 28, 2009, 12:31:27 pm »
WOW, dealing with an AN is bad enough, but vasculitis on top of it would indeed be overwhelming.  So glad you are on the right road to recovery now!

Clarice
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Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Nani

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Re: Ending a self imposed silence
« Reply #13 on: September 28, 2009, 12:37:29 pm »
Keep at it.  One day at a time.  One foot in front of the other. 

We're here.
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- AN surgery 3-17-09. 3.8 x 5.1cm tumor.  1 month in the hospital and a couple in ST, OT and PT.

*People are always going to be behind you telling you you can't.  The important thing is to turn around and say 'watch me'.

Vivian B.

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Re: Ending a self imposed silence
« Reply #14 on: September 29, 2009, 07:43:59 pm »
Hi Richard,

Sorry you had to go through that experience, but the good news is that you are getting better. I wish you the best of luck with your continued progress.

Vivian
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CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.
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