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Author Topic: Can't I get a @#%$ing BREAK!!!!  (Read 48491 times)

Brewers7

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Re: Can't I get a @#%$ing BREAK!!!!
« Reply #45 on: July 08, 2010, 03:23:05 pm »
I couldn't help thinking of this thread today at the dentist for a simple cleaning, my first since AN surgery 19 months ago.  I have put it off because of my TMJ and partial facial paralysis.  They knocked a crown off and could not get it back in.  Now cold drinks hurt.  Must go back next week to get it fixed.  OK, I cried a little bit and then had to laugh.  Can I get a break?  I'm thinking the lottery.  Susan
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Translab surgery 12/15/2008 followed by CSF leakage repair and 3 additional surgeries for MRSA of the brain (NOT typical) SSD,  facial and vocal cord paralysis, numerous reconstructive surgeries, Transear 12/2010

moe

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Re: Can't I get a @#%$ing BREAK!!!!
« Reply #46 on: July 08, 2010, 07:58:58 pm »
Ah, that sucks.
Are they going to pay for a new crown or just put the old one back on?? If they pay for a new one, then you came out ahead!
Maureen
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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: Can't I get a @#%$ing BREAK!!!!
« Reply #47 on: August 11, 2010, 01:53:24 pm »
OK now I really can't get a break!!  Had an appt with the ENT--the one who delivered me the news of my AN while I was in the hospital (went in the day before with awful migraine combined with stuffy ear and hearing loss--GP admitted me thinking it was an AN) and he recommends removing my thyroid nodule, which is pretty large and interfering with my swallowing.  After I said I choked on a vitamin the other day he really stressed I get the thing removed.  It is out-patient and pretty simple surgery.  I've got a terrible track record with post-op complications--chronic migraines from AN surgery and chronic back pain from a torn sacroiliac joint capsule from a hysterectomy.  I figure all my bad luck is used up!

Surgery is August 24--wish me luck!! 

Capt Deb
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"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

Lizard

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Re: Can't I get a @#%$ing BREAK!!!!
« Reply #48 on: August 11, 2010, 02:00:15 pm »
Deb,
Geez that is some bad luck, but hopefully this one will be nothing.  Quick recovery with no pain!  Sorry to hear you have to have another surgery, sucks to go under the knife no matter how minor.
Hang in there,
Liz
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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

Jim Scott

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Re: Can't I get a @#%$ing BREAK!!!!
« Reply #49 on: August 11, 2010, 02:05:43 pm »
Deb ~

I'm sorry to learn that you have to endure yet another surgery, albeit a minor one, as an out-patient.  Still, who needs the stress?  If wishing can make it happen, I trust that some good luck is coming your way.  :)

Jim
« Last Edit: August 11, 2010, 03:27:37 pm by Jim Scott »
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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.

pjb

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Re: Can't I get a @#%$ing BREAK!!!!
« Reply #50 on: August 11, 2010, 02:06:42 pm »
So sorry for all your problems and wish you luck on August 24... That is exactly how I feel cannot catch a break either the year prior to my surgery I had issues but after is just worst with post-op issues now I have gastroparesis and was advised to get the gallbladder out well I did still feel the same truly believe it is from th 10th cranial nerve while they were working on the 8th. Next is surgery for the urinary bladder that is another story neck and back pain worse since surgery. But now the big one is I just find out with my 1 year MRI that I have some residual from the surgery a year ago and the doctors knew it and I did not !!! They told me it was totally removed and I had scar tissue... I am still in shock and do not know which way to turn now ?? I try to keep saying I am still lucky and there are others worse but I have many moments of depression ....

My prayers and thoughts will be with you on the 24th of August.

Best Wishes,

Pat
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Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

jerseygirl

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Re: Can't I get a @#%$ing BREAK!!!!
« Reply #51 on: August 11, 2010, 02:16:13 pm »
Deb,

When i think of you, the expression "when it rains, it pours" comes to mind. The best thing about bad weather is that it has to stop. I wish you many, many happy and sunny days. Hope this thyroid thing is just a bump in the road.

                                      Eve
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Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Mei Mei

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Re: Can't I get a @#%$ing BREAK!!!!
« Reply #52 on: August 11, 2010, 03:26:30 pm »
Dear Deb,

You've done so much good for all of us, some good has got to come your way.   Maybe you should start wearing the evil eye to keep it away from you.

If it makes you feel better I'll share with you my latest:  I took my father home from the Rehab Hospital yesterday and they scheduled 4 days a week of Out Patient therapy for me to drive him to starting this Friday.  Right now we still don't have the Handicapped transportation arranged for yet so I have to do all the driving and waiting around the hospital.   I'm the one that needs to be in the rehab with the throbbing in my skull and neck and nightly headaches ,,, but no Oh no, GrandPa comes first.   Hope this Metro Access Card gets processed real soon so that I won't have to drive him forever.   

Please stay well.   I wish you could come up here and go to our accupuncturist that has the best Massage therapist right afterwards.   Is there any such a place near you to help you relax?

Mei Mei
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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

Debbi

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Re: Can't I get a @#%$ing BREAK!!!!
« Reply #53 on: August 11, 2010, 03:40:45 pm »
Sending you all the good luck, Deb.  You definitely are way overdue for a break!

Debbi
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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

Captain Deb

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Re: Can't I get a @#%$ing BREAK!!!!
« Reply #54 on: August 11, 2010, 06:44:13 pm »
Mei mei,
Have you thought about calling Social Services for help with Grandpa? Maybe they can hook you up with a car service of some kind.  Or is that what the Metro Access card is for?  When my mom became disabled, a physical therapist came to her home, but that was back in the 80's before this health care crisis. It is almost a danger to drive with the kind of headaches we have. I have had to call Dr Love more than once to come get me while I was out doing stuff and got a brainwreck. Hugs to you and Grandpa.

Capt Deb
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"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

Mei Mei

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Re: Can't I get a @#%$ing BREAK!!!!
« Reply #55 on: August 11, 2010, 08:10:48 pm »
Yes, That's what the Metro Access card is for.  It expired last Fall and to get it renewed we have to get the doc. to fill out this long form which he did and then make an appt. in Downtown DC for an interview and bring the form with a copy of our taxes, drag him upstairs in his wheelchair in this heat and traffic and mind you he is disabled and 6 feet tall and I am 5 ft. 3.  They won' t exempt him from the interview.  It's crazy.   Headache and all I have to take him to 5th St. NW in DC to prove to the Metro Access people that he is what he is i.e. a 95 year old hemi plegic hard of hearing old man that can't ride a bus alone.

I need a break too.   He wants me to drive him to Charlottesville, VA this weekend for the Great Grandson's two year old birthday party which is going to be in the outdoor park not at home in the A.C.   They want to have a picnic in the park at a swimming pool and have hot dogs.   I, too, will live through this.

My scalp is pounding with pins and needles and I take Aleve and Topamax and Neurontin and Elavil and and and whatever else I can grab!

We all need a BREAK!!!!
HUGS!!!! Mei Mei
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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

moe

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Re: Can't I get a @#%$ing BREAK!!!!
« Reply #56 on: August 12, 2010, 09:10:41 am »
Dear Capn Deb, Pat, and Mei Mei,

You guys all need a break, most definitely!

DEB- third time's the charm. Get this little nodule taken care of and then smooth sailing :) Saw that you are back in your painting room, so hope your headaches are under control and you can continue your hobby.

PAT-So sorry to hear about your recent news that the "scar" tissue is some residual. Did they say how big the residual? Plus all the other issues. Ugghhh, Hang in there. Don't have to go into details about your bladder surgery  :o , but I do know that that can be considered major surgery depending on what they are doing. It is just a full time job taking care of the body, I imagine. :-\

And Mei Mei,
The stress of taking care of your grandpa is a bit much too ask of you, but sounds like you are a trooper. Another example of how one "appears" fine after AN surgery but there is a lot going on that people can't see, so people expect us to just be our old normal selves.....

HUGS to all of you,
Maureen
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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

pjb

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Re: Can't I get a @#%$ing BREAK!!!!
« Reply #57 on: August 12, 2010, 12:07:14 pm »
Thank you Maureen you have been such a great help to many of us and I personally thank you for your genuine concern... No they did not tell me the size I found out about this by accident so that is very upsetting to me when you trust someone and now this happens they said it is in the ear canal ?? So needless to say I am confused and do not know what to do this time around. But my neurologist who I sent a copy to advises me to not wait get another MRI in 3 months but to start looking for doctors in NY specializing in radiation.. That was my problem before no one accepts my coverage and if they do I never heard of them and have to get someone with more knowledge to do some research for me..

Again, thank you for advice to myself and others on this site that you have given...

Best Wishes,

Pat
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Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

pjb

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Re: Can't I get a @#%$ing BREAK!!!!
« Reply #58 on: August 12, 2010, 12:56:42 pm »
Quote from: Mei Mei on August 11, 2010, 08:10:48 pm
Yes, That's what the Metro Access card is for.  It expired last Fall and to get it renewed we have to get the doc. to fill out this long form which he did and then make an appt. in Downtown DC for an interview and bring the form with a copy of our taxes, drag him upstairs in his wheelchair in this heat and traffic and mind you he is disabled and 6 feet tall and I am 5 ft. 3.  They won' t exempt him from the interview.  It's crazy.   Headache and all I have to take him to 5th St. NW in DC to prove to the Metro Access people that he is what he is i.e. a 95 year old hemi plegic hard of hearing old man that can't ride a bus alone.

I need a break too.   He wants me to drive him to Charlottesville, VA this weekend for the Great Grandson's two year old birthday party which is going to be in the outdoor park not at home in the A.C.   They want to have a picnic in the park at a swimming pool and have hot dogs.   I, too, will live through this.

My scalp is pounding with pins and needles and I take Aleve and Topamax and Neurontin and Elavil and and and whatever else I can grab!

We all need a BREAK!!!!


HUGS!!!! Mei Mei

You definitely need a break that is just crazy with what they are putting you through.

Best Wishes,

Pat
« Last Edit: August 19, 2010, 04:57:33 pm by pjb »
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Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

yardtick

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Re: Can't I get a @#%$ing BREAK!!!!
« Reply #59 on: August 12, 2010, 04:51:19 pm »
Wishing you all the best my favourite Captain. 

Anne Marie  :-* :-* :-* :-*
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Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games
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