Author Topic: Captain Deb has a Botox appointment!  (Read 21978 times)

Lizard

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Re: Captain Deb has a Botox appointment!
« Reply #45 on: May 13, 2010, 10:52:03 am »
I figured as much...sailing week IS AMAZING!  We really love it there.  They actually have resorts where they teach people how to sail, really cool place and the people are great too.  Thanks for sharing!
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Mei Mei

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Re: Captain Deb has a Botox appointment!
« Reply #46 on: May 14, 2010, 07:10:56 pm »
That should give some relief for the headaches.   Go girl...

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

bell

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Re: Captain Deb has a Botox appointment!
« Reply #47 on: May 15, 2010, 02:11:54 pm »
Headache relief...............
I just received 13 Botox injections on WEd.  Injections were on both sides of temples, eye brows, furrow(between eyes), behind ear (jaw muscle), upper neck and 2 in incision areas.  Weird feeling and some really stung.
I am staying on the RX Depakote and Tizanidine.  If I feel good in two weeks I can go off of Tizanidine, then I see my neorologists in 6 weks. 

Results:  First night no headache, 2nd pounding and headache but I toughed it out.  Third night I had to take 1/2 Alleve ponding was too much to take and I had to work. This is fourth and I think I will be ok, so far no tingling and sensations with mild pulsing.  I hope botox works!!!!!!!!! 
I have also upped my B vitamins and taking Xangosteen juice.  Take Care to everyone,
Bell 

Captain Deb

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Re: Captain Deb has a Botox appointment!
« Reply #48 on: May 16, 2010, 12:18:17 pm »
My neurologist said it takes 3-4 weeks to get the full effects of the Botox, so hang in there, bell!  Also, Botox is rather cumulative, so the second round of injections should give you even more results.  I haven't had a bad headache since my second round.  I am having some strange movement effects, however.  I cannot put dishes away in the cupboard over the sink!  He injected some of the muscles in my trapezius area and now they don't work.  My brain tells the muscle to work and it refuses!  I just can't lift my arm above my head. Maybe it will refuse to become inflamed and send pain signals to my brain as well. It's worth the trade-off since I can coax Dr Love into putting the dishes away most of the time.

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Captain Deb

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Re: Captain Deb has a Botox appointment!
« Reply #49 on: September 19, 2010, 03:03:22 pm »

Just wanted to chime in on my Botox experience so far.  It is definitely worth giving it a shot, especially if meds are not doing the trick for you or are giving you difficult side effects. I am not talking about Botox once or twice, but at least three to 4 times of at least a dozen to 16 injections.  I had my third round, three months apart-- about a month ago and I have not been this headache-free since I woke up from surgery 7 1/2 years ago.  I seem to even have less headaches than I did BEFORE surgery.  Not to say that I am entirely headache-free.  I still get an occasional occipital headache which I can stop in a few hours with 2 Fioricet, an ice pack, and rest. I cannot take NSAIDS like ibuprophen or aleve at all any more due to tummy issues, hence the Fioricet, which is Tylenol with a mild dose of valium-like stuff in it.  Nothing like the rolling-around-crying-holding-my-head-and-wanting-to-DIE ones I was getting before, and I had about a hundred or so of those in the past 7 1/2 years.  I spent  thousands of $ on expensive meds--injectable Imitrex, Topamax, Depakote, even with insurance.

The funny thing is that Botox is what my neurologist mentioned to me on my second visit to him, but my insurance co refused to pay for it.  It was off label use at the time, but nowdays Allergan markets two different Botoxes--Botox Cosmetic and Botox for theraputic uses. It was $1200 a visit. But that was almost 8 years ago and with new information and studies some insurance cos. may have changed their tune.  When I got approved for disability, I got Medicare with it and as soon as I found out that Medicare would pay for it, I scheduled the injections. Since my last round of injections I have not once woke up in the middle of the night or in the morning with a headache, which were the absolute worst of the worst.



Happy International Talk Like a Pirate Day to you wicked Wenches and swashbucklin' scallywags!

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Larry

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Re: Captain Deb has a Botox appointment!
« Reply #50 on: September 23, 2010, 07:18:51 pm »
Good update Deb, and glad its helping

I'm thinking about it.


laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Jim Scott

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Re: Captain Deb has a Botox appointment!
« Reply #51 on: September 24, 2010, 01:03:34 pm »
Deb ~

Slightly belated congratulations on your success with Botox injections.  We all know that you've been suffering far too long with disabling headaches are we're delighted to learn that you've finally found some lasting relief. 

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.

4cm in Pacific Northwest

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Re: Captain Deb has a Botox appointment!
« Reply #52 on: October 25, 2010, 10:31:06 pm »
 ;) :D

Captain,

Oh gee I should have listened to you and bought stocks in Botox

http://www.reuters.com/article/idUSTRE69H2TY20101018

I think not just Reuters but Forbes have been lurking our site here  ;) :D ;D

Here is the Forbes report on Botox
http://www.youtube.com/watch?v=xkiXSntwRrE

I am sorry but this is really making me giggle.   I tell you Captain we could have been rich... RICH I say...and sailed to the Caribean if we had bought and sold... Rich matey... Rich I tell yer...


Hand me some grog.... ;)
DHM
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Mei Mei

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Re: Captain Deb has a Botox appointment!
« Reply #53 on: October 26, 2010, 10:50:43 am »
That's great news.   Now I have to find someone to give them to me.   The first anesthesiologist that I went to says they are too expensive when I asked for them.   I contacted another who does do botox and after reading my file, wouldn't accept me as a patient and that I should continue to see my neurologist.   My neurologist said they won't help me.   I really want to try, but just can't find someone willing to try with me.

In frustration,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Captain Deb

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Re: Captain Deb has a Botox appointment!
« Reply #54 on: October 26, 2010, 10:59:11 am »
You know, one doesn't know if Botox works until you TRY it!  Now that the FDA has approved Botox for theraputic treatment of headaches (Yay!!!!) it should be less difficult to find someone to help you.  Keep calling those docs, Mei mei!

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

 


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