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LostSapphire: sending out love, dust, prayers and support to you!!!

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Oh LS - I was just dropping in to wish you good luck at your appointment tomorrow, and then I saw your note from today
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So sorry to hear about the horrible pain today - I really really hope you are able to get some sleep and some relief and some answers tomorrow.

Sending prayers and good thoughts to you, and also to catmom - sounds like you both could use it!
 
Thank you AG.

I tried to sleep but can''t. So I''m using the next best strategy, DISTRACTION.....(a.k.a. surfng on PS)
LS
 
Woo hoo! Yay for distraction!
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Seriously though - I'll be sending prayers and well wished to you as fast and furiously as I can tomorrow!
 
My thoughts are with you today, LS. Here''s hoping for some answers.
 
We''re off to see the Wizard, the Wonderful Wizard of Oz!
We hear he is a wiz of a wiz, if ever a wiz there was.
If ever, oh ever, a wiz there was
the Wizard of Oz is one because
Because because because because beCAUSE
Because of the wonderful things he does!
We''re off to see the Wizard
The wonderful Wizard of Oz!

Here''s hoping the visit with the neurosurgeon goes well, LS. I''m keeping my fingers and toes crossed for you.
 
LS - i am thinking of you today and sending you the best thoughts and prayers that i have for a successful visit with the neurosurgeon.
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Hoping you got good news my friend. ((HUGS))
 
LS, I''ve been following this thread but haven''t posted until today. I woke up this morning and thought, "Today is LostSapphire''s Day!
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" I truly hope you have heard good news today and you will soon be on the way to pain-free days and peaceful nights. I think of you often and am sending hugs and good thoughts!!!
 
Hi everybody.

So here''s the deal. There is not another tumor. What there is, is a compression of my trigeminal nerve at the edge of my brainstem...caused by some blood vessels that seem to be acting up. Apparently I am the first of over 1000 patients this neurosurgeon has seen with Trigeminal Neuralgia with this combination of symptoms. That makes mine an ''extreme atypical case'' which limits the options available, and the probabilities of success. Gee thanks, I always wanted to feel special...
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I met today with my original neurosurgeon, the new guy and one other who I believe who sat in because my file was "interesting". So I am comfortable knowing that many GREAT minds came together to work out a solution to my problem. It''s not great, but I''ll take it.


Solutions? Here are the 3 (and ONLY) options available:

Option A: Do nothing. In other words, if you like your life (and pain levels + being able to work) just like this, do nothing. Continue to work through excruciating pain, and not being able to medicate the pain without making you a dope.

Option B: "Yes, we can fix that pain". "It will involve heavy doses of anti-convulsants, opiods (morphine) and life-altering changes such as quitting your job and staying home to watch TV all day." I REFER TO THIS AS THE "JUDGE JUDY" OPTION.

Option C: Brain surgery. Microvascular Decompression (MVD). (technically he refers to it as "intra-cranial micro-vascular brain surgery" for those of you medical techies out there)

Risks of Option C?
Stroke/Death 1% (and all the usual stuff they have to tell you before you sign the consent forms)
Hearing or facial nerve loss 2-5% (keep in mind I am already deaf on one side due to my previous brain tumor removal)
Probable "success" of the surgery? (ie: wake up with no pain and it''s gone): 60-65%. I''d like a higher percentage but ya get what ya get....
Due to the ''atypical'' nature of my situation, there is a 35% chance that this might not work. Other surgical options are not recommended for me. If the MVD doesn''t work, I would be given the choice between Option A and the Judge Judy option (B).

Every effort will be made to ensure that my hearing remains intact.

So that''s kind of it in a nutshell. I haven''t totally absorbed everything that happened today, but thought I should give you an update.

OH, and yeah, he wants it DONE in the next 4 weeks
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So it still hurts like hell tonight but at least I have a plan, and the BEST OF THE BEST available in Canada for this procedure. That, and my original neurosurgeon looking over his shoulder.
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Thank you all for your prayers and kindness. I really appreciate it.

LS
 
Lost, thank you for the update. Just wanted to pop in and say that I''m thinking of you. Biggest hugs outgoing.
 
Thank you so much for updating us LS! There is good news, no tumor. That''s a definite YAY! The other good news is that now you know what you are dealing with and can make a decision on what you want to do. Please know that we will all be here to support you on which ever decision you make although it sounds like you are going for option C. I''m sending my most positive thoughts that if option C you fall into the 60-65% success rate!
 
Thank you catmom

I''ve already signed the paperwork and they''re scheduling the surgery.

LS
 
Oh, LS, I am so glad to see you checked in with a report! Gosh, I guess it''s good it''s not a brain tumor, but still, you have such a rare condition! I believe I''d go for the surgery, too. We''ll just be praying hard that the surgery is successful! There''s no way you can manage this kind of pain long term. Keep us informed! {{{hugs}}}
 
Date: 1/7/2009 9:34:29 PM
Author: Catmom
Thank you so much for updating us LS! There is good news, no tumor. That''s a definite YAY! The other good news is that now you know what you are dealing with and can make a decision on what you want to do. Please know that we will all be here to support you on which ever decision you make although it sounds like you are going for option C. I''m sending my most positive thoughts that if option C you fall into the 60-65% success rate!
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Beautifully put. I echo the sentiment. From what I know of you, I can''t see you settling for any option but C. ((HUGS)) You''re already extraordinary - we''ll just pray that you''ll continue to be so, and come out on top! Prayers and well wishes still heading your way with a vengeance! ((HUGS))
 
Date: 1/7/2009 11:09:21 PM
Author: geckodani

Date: 1/7/2009 9:34:29 PM
Author: Catmom
Thank you so much for updating us LS! There is good news, no tumor. That''s a definite YAY! The other good news is that now you know what you are dealing with and can make a decision on what you want to do. Please know that we will all be here to support you on which ever decision you make although it sounds like you are going for option C. I''m sending my most positive thoughts that if option C you fall into the 60-65% success rate!
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Beautifully put. I echo the sentiment. From what I know of you, I can''t see you settling for any option but C. ((HUGS)) You''re already extraordinary - we''ll just pray that you''ll continue to be so, and come out on top! Prayers and well wishes still heading your way with a vengeance! ((HUGS))
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Thritto to this LS - big huge hugs and prayers for you on your surgery!!!!!
 
LS good luck on the surgery. I am keeping you in my prayers and praying you will wake up with 0 pain and 0 complications!
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I haven''t posted in awhile, but you''re still in my thoughts. Hoping for the best possible outcome LS...

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LS, wishing you the best outcome.
 
I think you are making the best choice, under the circumstances. I recently had to take the "Judge Judy" option, but that''s another thread, if I decide to post it. You needed to make the best possible choice and you are doing it. I wish you much sucess and a pain-free future
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I am thinking of you and sending you healing hugs and PS dust by the truckload...
 
LS - I''m so glad to hear that you are moving forward with this. Its not a great answer, but it is an answer, and does give some reason to hope. I will be keeping positive thoughts and prayers outgoing for the success of this surgery and the abatement of your pain.
 
Date: 1/8/2009 11:47:36 AM
Author: AmberGretchen
LS - I''m so glad to hear that you are moving forward with this. Its not a great answer, but it is an answer, and does give some reason to hope. I will be keeping positive thoughts and prayers outgoing for the success of this surgery and the abatement of your pain.
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Ditto
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SURGERY DATE: MONDAY JANUARY 19TH
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LS
 
Date: 1/8/2009 5:37:45 PM
Author: LostSapphire
SURGERY DATE: MONDAY JANUARY 19TH
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LS
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We''ll be praying...
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Thank you DS.

So far the prayers and good wishes have certainly fast tracked this problem. I was expecting having to wait months for the surgery.

LS
 
Date: 1/8/2009 10:28:40 AM
Author: Ellen
LS, wishing you the best outcome.
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Me too sending prayers your way, dust positive vibes, and all the rest. HUGS. You made a good decision, one that is right for you.
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Dust prayers and love my friend! I''m sure it''s frightening to think of how fast your surgery is approaching. At the same time - how wonderful to not have to wait. ((HUGS))
 
Thanks Gecko and Kaleigh

I''m trying not to puke
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.....all the memories of the 1st surgery (15 years ago) now seem like yesterday.....

LS
 
Oh that''s very soon. We''ll all be thinking of you on the 19th and until then - I''m sure you''ll come through this surgery with flying colors. Sometimes knowing what to expect, while it makes it scarier, also makes it a little easier to cope with. I will keep my fingers crossed that''s the case for you.
 
Thank goodness!!!

I am so glad that this is happening so quickly for you. I''m praying that it goes smoothly, and that you''re one of the 65%.

I know it''s scary, but at least you don''t have weeks and months of dread leading up to it. Just a week and a half.

DUST DUST DUST DUST DUST
 
Thank you for the update LS! I''m sending tons of dust and tons of hugs to you-I know that Jan 19th will go well!
 
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