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

[Kelli]

I hope your recovery is still going well!

 

[LostSapphire]

I''m getting a bit down about the outcome of my surgery. It''s a bit complicated, but basically I think that one part of the problem has been resolved, but I continue with severe pain in my teeth/jaw area. This is a secondary issue that is probably permanent. (this isn''t the MONSTER: he is dead. But it''s kinda like the Monster''s younger brother)

It''s now 2 weeks and 2 days since the surgery. My pain log is not filled EVERY day with the pain, but still, it''s there.

The neurosurgeon says to give it a full 6 weeks for everything to settle down. But my GUT says we only got a 50% success....ie: instead of pain on the entire side of my face, I have the same "level" of pain, but in a smaller area.

Thanks for listening: I just needed to whine a little bit.

LS

 

[Lorelei]

Hang in there sweetheart, it is still very very early days!

Hugs!!

 

[geckodani]

Date: 1/7/2009 6:20:38 PM
Author: LostSapphire

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.

((HUGS))

Okay. Objectively. So we're looking at a 50% fix. Well, that's infinitely better than option A from before your surgery. Or option B for that matter.

You took option C. So, first and foremost. Your 1% chance of death did not occurr. This percentage had me on the edge of my chair biting my nails off until you posted after surgery. So. YAY for that!

I don't believe you've suffered additional hearing loss. So yay for that outcome as well!

That 35% that it wouldn't work at all... also didn't happen. So YAY for that too.

Now... that remaining 50% pain. I'm sure you've still got swelling and trauma in there. I mean, you had brain surgery my friend. ((HUGS)) I've never been through it, but even minor surgeries take time to fully heal.

If, at the end of the 6 weeks, the pain is still there in the smaller area, can it be managed with meds that won't leave you zonked to the world?

Hang in there - keep the faith! ((HUGS))

 

[LostSapphire]

Date: 2/5/2009 12:46:14 PM
Author: geckodani
((HUGS))

Okay. Objectively. So we''re looking at a 50% fix. Well, that''s infinitely better than option A from before your surgery. Or option B for that matter.

You took option C. So, first and foremost. Your 1% chance of death did not occurr. This percentage had me on the edge of my chair biting my nails off until you posted after surgery. So. YAY for that!

I don''t believe you''ve suffered additional hearing loss. So yay for that outcome as well!

That 35% that it wouldn''t work at all... also didn''t happen. So YAY for that too.

Now... that remaining 50% pain. I''m sure you''ve still got swelling and trauma in there. I mean, you had brain surgery my friend. ((HUGS)) I''ve never been through it, but even minor surgeries take time to fully heal.

If, at the end of the 6 weeks, the pain is still there in the smaller area, can it be managed with meds that won''t leave you zonked to the world?

Hang in there - keep the faith! ((HUGS))

Thanks Gecko. I''ll print that out to remind me to be grateful. It''s just really hard some days. I want to wake up and be DONE with this. (you are correct: my hearing has not been affected. My balance however, is shot and doesn''t seem to be improving...might take some more time). I''m nauseated all the time. AND MY HEAD HURTS.
I''m so afraid that this is as good as it might get (a very real possibility).

LS

 

[geckodani]

Date: 2/5/2009 1:11:21 PM
Author: LostSapphire

Date: 2/5/2009 12:46:14 PM
Author: geckodani
((HUGS))

Okay. Objectively. So we're looking at a 50% fix. Well, that's infinitely better than option A from before your surgery. Or option B for that matter.

You took option C. So, first and foremost. Your 1% chance of death did not occurr. This percentage had me on the edge of my chair biting my nails off until you posted after surgery. So. YAY for that!

I don't believe you've suffered additional hearing loss. So yay for that outcome as well!

That 35% that it wouldn't work at all... also didn't happen. So YAY for that too.

Now... that remaining 50% pain. I'm sure you've still got swelling and trauma in there. I mean, you had brain surgery my friend. ((HUGS)) I've never been through it, but even minor surgeries take time to fully heal.

If, at the end of the 6 weeks, the pain is still there in the smaller area, can it be managed with meds that won't leave you zonked to the world?

Hang in there - keep the faith! ((HUGS))

Thanks Gecko. I'll print that out to remind me to be grateful. It's just really hard some days. I want to wake up and be DONE with this. (you are correct: my hearing has not been affected. My balance however, is shot and doesn't seem to be improving...might take some more time). I'm nauseated all the time. AND MY HEAD HURTS.
I'm so afraid that this is as good as it might get (a very real possibility).

LS

((HUGS)) Are you still on meds that could be contributing to the nausea and balance issues? Shoot, I'm on steroids and massive allergy meds from an ER visit sunday (massive allergic reaction) and my balance is shot to hell and food is my worst enemy. I can only imagine that whatever meds they've got you on are must be playing havoc with your system!

Is there still swelling? I refuse to believe that this is as good as it gets. I shall attempt to will it into being so.

I can't imagine what you're going through, and I'm sure that the healing process is extremely frustrating. Any time you're healing from something, it's hard, and scary and frustrating, and you just want it DONE. Your body should be under your control, and it's not. I totally understand that feeling of helplessness, although not on the same magnitude.

Don't let fear get the better of you. You've still got healing to do. You are an amazingly strong woman that has faced more than anyone should ever have to. And you're still here. And I have every faith that you will get through this.

You're still in my prayers.

Don't forget your poem:

You gain strength, courage and confidence
by every experience in which you really stop
to look fear in the face.
You are able to say to yourself,
“I lived through this horror.
I can take the next thing that comes along.”

You must do the thing you think you cannot do.

Eleanor Roosevelt

You beat the monster. You'll heal, and beat his little brother down with him, if that's what it takes. ((HUGS))

 

[diamondseeker2006]

Oh, my, you have every right to cry on our shoulders, LS. Gosh, I just hope this is temporary. Living with constant pain would be unbearable. I''ll continue to pray that your recovery will result in a reduction of pain over time. I am so very sorry!

 

[geckodani]

((HUGS)) Thinking about you.

 

[LostSapphire]

thanks guys. This week stinks.

I decided, f*ck it (sorry for swearing but that''s exactly what I thought to myself). So I got on my exercise bike and rode for 20 minutes. If I''m gonna have something permanently, might as well suck it up and deal.

Now, don''t go thinking I broke a sweat or anything on the bike: remember, I have no balance function yet so the majority of my effort went towards not falling off the seat.

Today I also tried driving my car for a bit. Luckily I live in the country so not many cars out there. And sweet DH rode shotgun, of course. He says I did ok. It''s just kind of hard to turn my head to check for other cars without having dizzy spells so I took it really slow.

LS

 

[Kelli]

Good for you for getting on your exercise bike and back into your car! I will join Gecko''s attempt to will the rest of the pain away!

 

[geckodani]

Date: 2/5/2009 9:07:43 PM
Author: LostSapphire
thanks guys. This week stinks.

I decided, f*ck it (sorry for swearing but that''s exactly what I thought to myself). So I got on my exercise bike and rode for 20 minutes. If I''m gonna have something permanently, might as well suck it up and deal.

Now, don''t go thinking I broke a sweat or anything on the bike: remember, I have no balance function yet so the majority of my effort went towards not falling off the seat.

Today I also tried driving my car for a bit. Luckily I live in the country so not many cars out there. And sweet DH rode shotgun, of course. He says I did ok. It''s just kind of hard to turn my head to check for other cars without having dizzy spells so I took it really slow.

LS

I''m a fan of f*ck it. Seriously. Sometimes f*ck it is the best way to go.

Good for you for getting out there. And I guarantee that you lacking balance are still a better driver than a lot of the idiots that drive around here.

((HUGS))

 

[SarahLovesJS]

Sorry to hear things are not 100% success, here''s hoping for less pain. But it''s good that you''re trying to get back to doing things like driving!! Hugs and dust outgoing.

 

[risingsun]

You are in my thoughts and prayers. I hope that you continue in your recovery. It may take more time for the other pain to resolve. You are truly a role model. I don't know that I could cope with all this the way you have. We may be posters on a forum, but we are here for you

 

[VRBeauty]

Date: 2/6/2009 10:55:56 AM
Author: risingsun
You are in my thoughts and prayers. I hope that you continue in your recovery. It may take more time for the other pain to resolve. You are truly a role model. I don''t know that I could cope with all this the way you have. We may be posters on a forum, but we are here for you

Hear, hear! (Or would that be read, read??!)

I am in awe of your resilience and your amazingly courageous and positive attitude, given what you''re facing and the pain you''ve dealt with for so long.

 

[bee*]

Sending hugs. Try and hang in there with this. It''s still very early days after the surgery so hopefully the pain will start to get less in time. That''s great that you got on your bike and out and about in the car. We''re all here for you!

 

[sevens one]

*** hugs ***
thinking about you LS

 

[geckodani]

 

[LostSapphire]

Hi everybody.



I'm working really hard on finding positive things every day. Here's what I have so far for this week:

- Dyed my hair yesterday and only got a little bit on the surgical site. So I have kind of a grey/brown stripe at the back of my head. The rest of it is back to a gorgeous mahogany red.
- I am finally getting more than 3-4 hours sleep a night.
- Enjoyed my first cup of coffee today since the surgery (for some reason anaesthesia really messes up my taste buds).
- The vertigo continues. But at least now when I get out into an environment with more stimulation than at home, like say, in a store or at church, the noise/visual stimulation doesn't make me totally lose my balance.
- I can chew (like, say, meat!) on the left side of my mouth again....in spite of the fact that it *feels* like I need 6 root canals on the left side....repeat LS: THERE IS NOTHING WRONG WITH YOUR TEETH. THAT IS NERVE PAIN. But the steak was good.
- No more migraine (yay). My chiro did an amazing job releasing those extra tight neck muscles.
- I'm driving every day, for a little bit. It helps to feel a lot more independent rather than counting on sweet DH to do everything for me.

LS

 

[MissGotRocks]

Sounds like you are making progress little by little. I guess these things are slow going but you are definitely moving forward - yay!!

Still lots of good thoughts and wishes coming your way ~

 

[Kelli]

Thanks for the update! It sounds as though things are slowly moving forward, I hope you continue to feel better!

 

[Fly Girl]

Feels like baby steps, but those are huge improvements!!! Still pulling for you LS.

BTW, do you wear that gorgeous sapphire ring every day?

 

[beaujolais]

Say, were you much of a coffee/tea drinker and had to quit for your surgery? That could contribute.

You had a big procedure, it may take time. I know that does not help with the frustration, pain or anything though. They say it takes a full year to recover from surgery.

---THERE IS NOTHING WRONG WITH YOUR TEETH. THAT IS NERVE PAIN.---

Now, I'm not sure if your are taking Lyrica now or not? Please update.

Big, soft hugs and a warm bubble bath to you, LS.

 

[LostSapphire]

Hi Kelli, FlyGirl and MissgotRocks. Thank you for your kind thoughts. BabySteps is an understatement.

Flygirl, the Blueberry has been in the drawer for most of the past month. I put it on yesterday and it felt really good! The swelling in my hands has gone down to where I can once again wear my rings.

LS

 

[LostSapphire]

Date: 2/8/2009 5:42:52 PM
Author: sonomacounty
Say, were you much of a coffee/tea drinker and had to quit for your surgery? That could contribute.

You had a big procedure, it may take time. I know that does not help with the frustration, pain or anything though. They say it takes a full year to recover from surgery.

---THERE IS NOTHING WRONG WITH YOUR TEETH. THAT IS NERVE PAIN.---

Now, I''m not sure if your are taking Lyrica now or not? Please update.

Big, soft hugs and a warm bubble bath to you, LS.

Coffee and tea both, but I only quit post-op because everything tasted funny. I can manage tea ok but the coffee is still difficult. This is fairly typical for me. Every surgery I''ve had (there have been quite a few) leaves me gagging on coffee for weeks.

Yeah, I know. There is NOTHING WRONG WITH MY TEETH.... $12K of dental work, gum surgeries, caps/crowns etc etc has me convinced of that...until the pain cranks up to about a 7/10 and all I want to do is pull out all of those beautiful new teeth!

No Lyrica, Tegratol or anything. I stopped taking all the anti-seizure meds a week prior to surgery. Post op I had the usual cocktail of pain meds + an anti-nauseant called Kytril. Stopped all of those about a week ago. After 3-4 days of any kind of pain meds my stomach starts to bother me more than the pain, or so it seems. So I usually cut that stuff off pretty quick and just try to tough it out.

I am going to document the changes and the things that are the same as pre-op, and fax that through to the surgeon on Tuesday. Will give him a chance to look at my file and give me a call to talk about it. He''s in a large urban centre about 1.5 hours from here so I''m good with phone/fax/e-mail doctoring at this point. My follow up appt is March 5th. But I think I need to tell him about the severe vertigo (which only kicks in when I am laying down, but takes 3+ hours to go away once I''m up and about).

We discussed the possibility (pre-op) that my facial pain was a combination of the trigeminal nerve root compression + damage to the delicate nerve endings at the front of my face. I believe the root compression has alleviated a part of the problem, ie: the constant burning on my left palate and tongue, and the severe axe-like feeling in my jaw.

The tooth pain continues exactly as before (ie: every tooth from front centre to the back of the left upper jaw). It still runs anywhere from a 3 to a 7 on a scale of 10...if it were a 3 every day I''d be good, but it''s mostly 6-7-8. I''ve also some new numbness on the front of my face below my eye. What IS different as well, is I no longer have hyper-sensitivity to cold, either on my face (cold wind) or, cold food like ice cream no longer triggers an attack. So that we know is the root decompression having been successful. The surgeon said there was an extensive compression of the root by an artery, which he separated with teflon.

So there''s your update Sonoma. thanks for keeping a lookout.

LS

 

[LostSapphire]

Date: 2/8/2009 12:48:57 AM
Author: geckodani

 

[VRBeauty]

LostSapphire: I know the remaining pain must be frustrating, but it still sounds like there has been so much progress! The monster has not re-appeared!

And... you''re driving, so the surgery has not impaired your independence! And of course, your DH is taking such good care of you....

I''m sure I''m not the only PS''er who''s planning to continue with dust, prayers, and/or good wishes until you give us the all clear!

Take good care of yourself...

 

[marcy]

Woo hoo for driving again. Sorry to hear you are still in pain but glad it''s not the "monster" anymore. Wishing you more relief as you continue to recover. Hugs to you sweet lady.

 

[beaujolais]

Oh, Lost - realize that when I highlighted "---THERE IS NOTHING WRONG WITH YOUR TEETH. THAT IS NERVE PAIN" I didn''t mean to be abrupt, at all harsh or anything. That is the last thing you''d need right now.

Why I copied it is that - that screams out to me "Lyrica".

Do you think you''ll start that again, at some time?

Thanks.

 

[geckodani]

((HUGS))

 

[LostSapphire]

Good morning Gecko.

How''s things?

LS