Lost Sapphire!

[geckodani]

Are you lost too? I miss hearing from you lady!

Gypsy's wheredidyougo thread had me wondering where you are!

 

[LostSapphire]

HiYa Gecko

Thanks for the call out.

No, I don't think I'm lost. Just having a rough go for the past little while: it looks like the Monster Surgery wasn't successful after all. The big axe is gone from my face but the rest of the nerve pain has come back.

D*MN! I had the D*MN brain surgery but it still hurts!

LIfelong medication is now the next option, and it doesn't look as though that's working.

So I'm trying to adjust to the concept that the hole in my head was not a total waste, but still....so things are kinda difficult right now.

sorry to sound so depressing.
LS

 

[violet3]

Oh LS, I am so sorry to hear this

. Is the medication working for you at all? I will be keeping you in my prayers that you feel better soon (hugs).

 

[Upgradable]

Oh LS.... I''m so sad and sorry for you! The risk and trust you embrace when undergoing a sugery such as yours is immense. And then to have the hope that it all worked out well, just punctured!

I''ll be praying for you.

 

[geckodani]

Oh LS.

HUGS!!! I''m so sorry to hear that it wasn''t the complete success you were hoping for!

 

[Skippy123]

oh no honey; I will keep you in my prayers that you find some relief soon. Huge hugs

 

[MonkeyPie]

Oh NO LS - we were all so glad that you were pain-free! I''m so sorry the nerve pain has come back. I really hope they find meds that work for you.

 

[LostSapphire]

Thanks everybody. I''m sorry to be so miserable.

We''re not optimistic about the medication because if I could have managed with them in the first place, I wouldn''t have had the surgery. The surgery was the "last resort, drastic measure".

The high levels of meds needed to block the pain (if possible, not always likely) make me really, really stupid and non-functional.

Thank you for your good wishes. I''m just having a real problem adjusting to this new reality. That, plus the actual hole in my skull where they went into my brain is problematic, so I''m feeling quite busted these days.

I''m sure it will all work itself out somehow. But the idea of the meds is bothering me alot.

LS

 

[geckodani]

All I gots is virtual hugs right now. ((HUGS))

 

[LostSapphire]

Thanks Gecko.

 

[D&T]

LS I am so sorry for all that is going on right now. Your condition is reminding me of my mother and she is on constant meds as she has a tumor in her head which causes such terrible pain not to mention agonizing "migraine" unfortunately surgery is out of the question and relies heavily on meds. My prayers are with you so that this condition subsides and you are not in terrible pain. *Hugs*

 

[Kaleigh]

LS, I am soooo sorry. I pray you find some medicine that helps with the pain. HUGE hugs!!!

 

[Porridge]

Oh LS I''m so sorry to hear this. You sound so brave. I hope things improve for you! Best wishes.

 

[oddoneout]

I''m sorry to hear of your health problems. I wish you the best.

 

[beaujolais]

--- but the rest of the nerve pain has come back ---

Darn.

I do imaging studies for some top notch pain Doctors about three days a week. If you have any questions you want me to ask them, please post. I know you have your own pain doctors but I can ask my guys their viewpoints, if you ever want.

Soft Hugs.

 

[Catmom]

Oh LS, I''m so, so sorry. I was hoping that your pain was gone for good. Gosh I sincerely hope that someone, somewhere can figure out something that can help you.

 

[beechezz]

Lost Sapphire,

I am deeply sorry that this surgery did not work for you. I hope the drs can figure out some way to make this medication work for you.

 

[Novel]

Oh, Lost Sapphire, I''m so sorry. As one nerve pain girl to another, I''ll be hoping for you. I know how bad those meds can be and the shock of a new reality... I''m so sorry you''re going through this.

 

[that_someone_special]

*huggggss*

 

[yssie]

Oh, no

::HUGS::

I''m praying that the new med regimen works well for you!!

 

[LostSapphire]

Date: 10/27/2009 5:09:45 PM
Author: sonomacounty
--- but the rest of the nerve pain has come back ---

Darn.

I do imaging studies for some top notch pain Doctors about three days a week. If you have any questions you want me to ask them, please post. I know you have your own pain doctors but I can ask my guys their viewpoints, if you ever want.

Soft Hugs.

Hi SC
thanks. I know you get it. As do many of the others here who have posted. thank you all so much. I wasn''t going to say a thing, because I feel like such a failure.

This isnt'' fixable: the damage to the nerve is permanent. It''s all about the meds and trying to lower my stress level, to possibly get the Trigeminal Nerve to calm down.

I can handle the idea of pain. What can you do, right? But it''s the idea that I had the #$@*(&%$#@@# brain surgery, got a hole in my cranium that''s problematic, have residual neurologial issues post-op, and I STILL have pain? GRRRRR

alright, pity party over.

LS

 

[DianaBanana]

Ugh...LS! I had no idea you were dealing with this....I''m so sorry

 

[Dancing Fire]

LS...get well soon!!

 

[VRBeauty]

LS -- if anybody is entitled to a bout of self-pity, it would be you.

Darn.

I''m so sorry that the surgery didn''t work.

I''m still glad, however, that you survived it with all of your faculties intact!

 

[Lilac]

LS, I''m so sorry to hear this. *HUGS*

It must be so frustrating to know you had the surgery and it still didn''t work. I hope you find meds that get rid of the pain (or at the very least, lessen it a great deal).

 

[geckodani]

Date: 10/27/2009 8:13:43 PM
Author: LostSapphire

Hi SC
thanks. I know you get it. As do many of the others here who have posted. thank you all so much. I wasn''t going to say a thing, because I feel like such a failure.

This isnt'' fixable: the damage to the nerve is permanent. It''s all about the meds and trying to lower my stress level, to possibly get the Trigeminal Nerve to calm down.

I can handle the idea of pain. What can you do, right? But it''s the idea that I had the #$@*(&%$#@@# brain surgery, got a hole in my cranium that''s problematic, have residual neurologial issues post-op, and I STILL have pain? GRRRRR

alright, pity party over.

LS

Trying to be positive - you did say that the axe is gone from the side of your face? A marginal improvement even?

I''m sorry if I prompted you to talk about something you didn''t want to bring up. I was worried about you.

 

[Gailey]

Date: 10/27/2009 8:13:43 PM
Author: LostSapphire

Date: 10/27/2009 5:09:45 PM
Author: sonomacounty
--- but the rest of the nerve pain has come back ---

Darn.

I do imaging studies for some top notch pain Doctors about three days a week. If you have any questions you want me to ask them, please post. I know you have your own pain doctors but I can ask my guys their viewpoints, if you ever want.

Soft Hugs.

Hi SC
thanks. I know you get it. As do many of the others here who have posted. thank you all so much. I wasn''t going to say a thing, because I feel like such a failure.

This isnt'' fixable: the damage to the nerve is permanent. It''s all about the meds and trying to lower my stress level, to possibly get the Trigeminal Nerve to calm down.

I can handle the idea of pain. What can you do, right? But it''s the idea that I had the #$@*(&%$#@@# brain surgery, got a hole in my cranium that''s problematic, have residual neurologial issues post-op, and I STILL have pain? GRRRRR

alright, pity party over.

LS

Oh Miss Lost I am just heartsick to hear your news. I''m having computer problems, so have and will be a bit absent here until it is resolved.

I just want you to know that I am so proud of you for the way you have dealt with your monster and despite this horrible downturn you are going through, you remain an inspiration to me and to many that have followed your story.

I think it goes without saying that if there was anything any of us could to to help you, we would and I hope that inspires you as you greet each morning. Heck, I''ll even come over and do your ironing for you (and I wouldn''t offer to do that for many!).

Stay strong and calm, never regret the steps you have taken and never stop hoping that tomorrow will be a better day and bring you some relief.

Much love

 

[LostSapphire]

Date: 10/28/2009 3:14:19 PM
Author: geckodani

Trying to be positive - you did say that the axe is gone from the side of your face? A marginal improvement even?

I''m sorry if I prompted you to talk about something you didn''t want to bring up. I was worried about you.

Hi Dani

Yes, you are right. And as usual, you find that little sliver of sunshine. Pre-Op, the pain had 2 separate components:
1. Originating from the base of the trigeminal nerve, close to my brain stem. Caused the axe in my cheek and eye.
2. Originating from the far end of the TN, at the front of my face (from mid-lip up to the cheekbone).
Combined, they became the monster.

Pain #1 is gone. YAY. It was excruciating.
Pain #2 has returned. YUCK. It is a constant numb/pain sensation along my upper left jaw. It just wears me down. Feels like all 6 teeth just had/and also need root canals.

I don''t mind your prompting, really. It''s probably good for me to have to put this into some sort of order in my brain and come to an acceptance of the situation.

Pre-Op, we knew the odds were approx 65% of a full success. I am happy that component #1 is gone. Thank you for reminding me that there WAS some improvement.

I''m just so tired of surgery, tests, and neuro-anything. And I have this little bit of fear that if #2 has returned, how long before #1 shows up to the party?
Thanks Gecko

 

[LostSapphire]

Date: 10/28/2009 3:18:48 PM
Author: Gailey
Oh Miss Lost I am just heartsick to hear your news. I''m having computer problems, so have and will be a bit absent here until it is resolved.

I just want you to know that I am so proud of you for the way you have dealt with your monster and despite this horrible downturn you are going through, you remain an inspiration to me and to many that have followed your story.

I think it goes without saying that if there was anything any of us could to to help you, we would and I hope that inspires you as you greet each morning. Heck, I''ll even come over and do your ironing for you (and I wouldn''t offer to do that for many!).

Stay strong and calm, never regret the steps you have taken and never stop hoping that tomorrow will be a better day and bring you some relief.

Much love

Thanks Gailey. I''m trying to get my chin back up to that point where you won''t feel the need to COME OVER AND MESS WITH MY MANGLE IRON.

(see, I''m trying to find my sense of humour, it''s gotta be in there somewhere.....)


LS

 

[LostSapphire]

Date: 10/27/2009 10:07:54 PM
Author: VRBeauty
LS -- if anybody is entitled to a bout of self-pity, it would be you.

Darn.

I'm so sorry that the surgery didn't work.

I'm still glad, however, that you survived it with all of your faculties intact!

The jury's still out on that one, VRB.

But today doesn't feel so bleak...thanks to the cyberhugs coming from all of you. thank you so much.

LS