Author Topic: Captain Deb has a Botox appointment!  (Read 21980 times)

Captain Deb

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Captain Deb has a Botox appointment!
« on: November 12, 2009, 10:53:42 am »
I just got off the phone with my neuro's receptionist--Medicare will pay for all but about $200 for Botox injections for my headaches!!!!!!  Of course I have to wait till Jan 19 because of all the hoops they have to jump through to get pre-authorization and the doc only does Botox once a month,  but I have an appointment. Jan 19th is two days past my 7th ANniversary. They can't be any worse than the nerve blocks I have had right into the occipital nerve--those about make me pass out. I really hope that this is the first step in a journey towards a cure. Janet you are my inspiration!!  I am glad to be another guinea pig for the rest of the AN Achers!!!

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

lawmama

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Re: Captain Deb has a Botox appointment!
« Reply #1 on: November 12, 2009, 12:42:46 pm »
Captain Deb,

Good luck!!!  I really hope this works out and you get some relief from your headaches.  I think it is so neat that they've found all of these fantastic uses for Botox.  I have never heard of it being used for headaches before.  Too cool!

Lyn
9mm X 7mm tumor (left side), diagnosed 10-15-09
Retrosigmoid on 12-14-09 by Drs. Antonelli and Lewis (my heroes!)
Shands in Gainesville, FL
SSD, but no facial issues.  Mild tinnitus.

Jim Scott

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Re: Captain Deb has a Botox appointment!
« Reply #2 on: November 12, 2009, 02:41:31 pm »
Captain Deb ~

I'm pleased to learn that you're going to be able to receive Botox® injections to help alleviate your headaches.  The two-month wait is unfortunate but at least you have something to really look forward to.  Hopes and prayers that the injections will deliver the relief you need.

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.

Debbi

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Re: Captain Deb has a Botox appointment!
« Reply #3 on: November 12, 2009, 02:45:44 pm »
Wow - botox for headaches, very cool.  I may be right behind you in the botox line, as am considering for the muscle spasms in my cheek and neck.  Which certainly are not anywhere near as serious as your ongoing headache issues (but, still, I'll love to get rid of the tight, achy face and neck.)  Never thought I'd ever be in line for botox.  Too bad we can't get a group discount...

Curious - what kind of doctor will you see to administer the injections?  Neurologist?  Plastics surgeon?

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

CHD63

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Re: Captain Deb has a Botox appointment!
« Reply #4 on: November 12, 2009, 02:54:53 pm »
Deb .....

This sounds very interesting ..... and hopeful from what I can find in the literature.  Sure hope and pray it works for you!  You have been through entirely too much in the headache department.

Thoughts and prayers.

Clarice
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

Captain Deb

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Re: Captain Deb has a Botox appointment!
« Reply #5 on: November 12, 2009, 03:02:57 pm »


Curious - what kind of doctor will you see to administer the injections?  Neurologist?  Plastics surgeon?

Debbi

He's my local neurologist.  He suggested this to me years ago, but my then insurance, BCBS of NC, wouldn't cover any of it and it is really expensive--can be up around $800-900.  If it will last 3 months that would be great--the nerve blocks were only lasting me around 3-4 weeks and you can only have so many of them.  The big thing is that if this works I could be a candidate for microdecompression surgery.

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

GeorgiaMei

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Re: Captain Deb has a Botox appointment!
« Reply #6 on: November 14, 2009, 02:23:09 pm »
Best wishes to you Captn Deb!  I hope this is going to give you some relief and hope for  future cure...  I'd be really interested in hearing if the Botox are more/less painful than the nerve blocks!  Let's hope for WAY less!!!
Karen
3.3cm x 2.6cm : Translab resect 3/08
Post-op epilepsy , multiple clots in brain sinuses
Chronic H/A, Facial paralysis, Imbalance, Vertigo
CN VIII removed-deaf in R ear
Received amazing care from Drs. Roberson and Colen at CEI/Stanford (www.californiaearinstitute.com)

leapyrtwins

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Re: Captain Deb has a Botox appointment!
« Reply #7 on: November 14, 2009, 09:55:39 pm »
Good luck, Captain!

Don't forget to tell us all about it after your appointment.

Jan
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

4cm in Pacific Northwest

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Re: Captain Deb has a Botox appointment!
« Reply #8 on: November 14, 2009, 11:04:35 pm »
Don't forget to tell us all about it after your appointment.


Ditto
 :-*

We are a weird bunch when get all excited about needle injections to our heads... ;) aren't we?  :D

I could not believe what the Botox did for my face pain... 10 days after injections I had almost normalcy. Mine does not seem to last the full 3 months ... but hey it works well on the releasing my muscles that are so tight they ache and cause pain... such nice to have relief. I hope you get this relief too.

Once the Botox kicks in be sure to do lots of stretching of the muscles in the neck (not by touch but by moving- you do not want to press where the botox was injected) ... and to limber up tight shoulders that all could have developed from tightening as you coped with headaches- and tensed up that area. Basically if this works and you feel good- get out there and be as active as you can during the window-of-time Botox provides you. I am finding after each Botox round (sadly it wears off) I have managed to keep things limbered "if" I do lots of stretching and therapy when the Botox is active and still working.  If you tie this in with some physio I think it will sustain more between injections.

See if there is some head and neck stretching exercise you can get.

Here are some random videos I looked at... I am sure someone might pipe in with something better ... in the mean time have a boo...


http://www.wonderhowto.com/how-to/video/how-to-do-a-seated-head-stretch-254658/

http://www.youtube.com/watch?v=TC1DipAXv0sa

Good luck Captain!


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!

Debbi

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Re: Captain Deb has a Botox appointment!
« Reply #9 on: November 16, 2009, 12:31:14 pm »
Thanks, as always, for the wealth of info, DHM.  A petty question for you - do the injections hurt?  (I know, I can't believe I am even asking that question after having brain surgery!!) :D

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

epodjn

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Re: Captain Deb has a Botox appointment!
« Reply #10 on: November 16, 2009, 03:39:49 pm »
Dumb question. . . . what is microdecompression?? What does it help with? I still have so much to learn, even after being almost a one year postie.
Left side 3.2cm AN/FN removed 12/8/08 Dr's. Shelton and Reichman. SSD, facial paralysis,taste issues, lateral tarrsoraphy 6/25/09,scheduled for eye and nasal valve surgery 6/22/11 life is GOOD!

CHD63

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Re: Captain Deb has a Botox appointment!
« Reply #11 on: November 16, 2009, 06:02:33 pm »
Deb can probably correct me if I am wrong ..... or add pertinent information.  Simply stated microdecompression surgery is relieving the pressure on a nerve using a microscope because the area (and nerve) is so tiny.  I am assuming in the case of headaches, a nerve is being pinched in the cervical spine area and that is where they would relieve the pressure.  In the spinal case, I believe it is usually a piece of bone or cartilage that is impinging the nerve so not quite sure what is done to relieve the pressure.

I had microvascular decompression surgery 15 years for trigeminal neuralgia.  In my case an artery and two veins were pressing on the 5th cranial nerve at the brainstem.  The neurosurgeon went in via a retrosigmoid approach (same as my AN surgery 2 years ago, but on the other side) and made a bridge with a teflon pad to hold the artery off the trigeminal nerve and clipped the two expendable veins.  It was major surgery but I have never had a return of the horrible trigeminal neuralgia since then.

.....  by the way, there are no dumb questions here!   :)  Ask away ..... that is how we learn!

Clarice
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

epodjn

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Re: Captain Deb has a Botox appointment!
« Reply #12 on: November 16, 2009, 06:21:51 pm »
Thanks Clarice, that makes sense. I really feel for anyone dealing with headaches. I get a few but nothing that a couple of OTC pills won't cure. I hope this helps all those who deal with them.
Left side 3.2cm AN/FN removed 12/8/08 Dr's. Shelton and Reichman. SSD, facial paralysis,taste issues, lateral tarrsoraphy 6/25/09,scheduled for eye and nasal valve surgery 6/22/11 life is GOOD!

moe

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Re: Captain Deb has a Botox appointment!
« Reply #13 on: November 16, 2009, 07:44:40 pm »
Good to hear from you Cap'n Deb and congratulations on your botox appointment!
Hoping this helps lots.
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Captain Deb

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Re: Captain Deb has a Botox appointment!
« Reply #14 on: November 19, 2009, 12:47:57 pm »
Dumb question. . . . what is microdecompression?? What does it help with? I still have so much to learn, even after being almost a one year postie.

Here's a link to a little more about the surgery:

http://www.cnn.com/2009/HEALTH/08/04/migraine.surgery/index.html

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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