Author Topic: just introducing myself  (Read 5402 times)

Nancy Drew

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Re: just introducing myself
« Reply #15 on: November 10, 2008, 08:48:27 pm »
Hi Will,

Just thought I would say "hi" again, and I hope all is still going well.  I am from CO also.....Denver area.  I think I remember my doctor mentioning Dr. Hegarty as being one of his second opinion docs.  Sounds like you are in good hands.  Best Wishes.

Nancy ;D
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Will

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Re: just introducing myself
« Reply #16 on: November 10, 2008, 09:55:26 pm »
And a friendly hello to you as well Nancy. Did you get some snow today? We got only a little rain, but Monument got about an inch.

Thank you for writing back. Are you happy with your doctor?  You have (from your signature) quite a large tumor. Are you stable and just watching it or preparing for surgery?

Yes, Dr. Hegarty is from the moment you meet him one of those people who is an enigma. I know second opinions are very neccessary sometimes, but after you leave him you don't need a second opinion. I'm a computer guy now, but I've been in the medical field for 35 years and I have met few physicians like him. He leaves no stone unturned, he explains things to you at whichever level you are comfortable, and on and on. I went into surgery knowing what to expect and that's exactly what happened. This event has been a life changing event for me, a very positive experience and a chance to improve my overall health and have a better attitude for the rest of my life. For all of us who have or had an AN, it could have been a lot worse. I lost a friend last year to a brain tumor that is supposedly a cousin to the AN.

Anyway, I won't get too philosophic and mushy, but I hope you (and everyone here) does well. If there is anything I can do let me know.

Regards,      Will
dx - Left AN 1.5 x 1.5 x 1.6 cm   8/1/08
surgery - 10-20-08   translab, SSD
Dr. Hegarty, Co. Springs

Sue Vogel

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Re: just introducing myself
« Reply #17 on: November 11, 2008, 02:53:28 pm »
Will,  My first message to you just disappeared...sorry about that.  I was reading your posting and saw many similarities in our cases.  My surgery was one week prior to yours.  I don't think that I had your anti-nausea patches, but I only had four little "episodes" of nausea.  They didn't amount to much as I was pretty empty.   I'm walking real well at home, but outdoors still reminds me that the balance rules have changed.  I started back on my exercise bike, and that feels great!  We are getting a Wii Fit like many others on the forum.  I'm going to try to get my doctor to validate it for a tax deduction.  I saw a major difference in my energy between weeks 3 and 4.  I also notice that some days I am more dizzy than others. The ANA website has some great little booklets in their store about the big issues of AN.  I ordered several and am intrigued with the one on Balance.  It provides the entire background information on how our balance works and the three key components of vestibular, visual, and proprioception - the sensors in places like the ankles, knees, hips, etc.  Then it explains how our brains have changed from AN surgery and what has to happen for the balance to recover.  It's pretty interesting.  The one on hearing loss is good as well.  That website is www.ANAUSA.org.     
                                                                                                                                                                                                           
It sounds like you are doing fabulous.  We apparently both had very talented surgeons.  I think that makes a huge difference in the outcome along with that very positive attitude that you displayed.  Best wishes to you in this shared journey.

SUE
3 cm left side
Translab. surgery 10/13/08
Dr. Gantz/Dr. Woodson
Univ. of Iowa Hospitals and Clinics
SSD, adjusting to balance issues
BAHA surgery 1/29/10 Dr. Gantz/Dr. Woodson (dynamic duo)

Nancy Drew

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Re: just introducing myself
« Reply #18 on: November 11, 2008, 07:58:20 pm »
Hi Will,

We haven't gotten any snow or rain, yet....Seems like you guys down there are always ahead of us with the snow.  Might want to check my signature again.  My AN is small, and maybe you were thinking cm instead of mm :).  I had gamma knife at Swedish Medical Center by Dr. Robert Feehs on Oct. 21, 2008.  So, I am a new postie, as they say.  So far I have only hit a few bumps in the road.  The reason I know of Dr. Hegarty is because I asked Dr. Feehs who he recommends for second opinions.  Dr. Hegarty was high on the list.  It is great that we have such good doctors in this area.  I was with another doctor before I changed over to Dr. Feehs.  The way you describe your doctor pretty much fits for how I would describe Dr. Feehs.  I love it when a doctor talks without all of the big medical terms......like, imagine your AN is an orange (I can relate to those kinds of examples).

So sorry to hear about your friend.  How sad.  Just when we think we have it bad..........My thoughts are with you, and thanks for sharing your story.  Send the snow up this way.  I always love the first snow of the year. 

Nancy :)
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Debbi

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Re: just introducing myself
« Reply #19 on: November 12, 2008, 04:40:48 pm »
Hi Will-

I just wanted to say a belated hello and "welcome!"  I have been off the forum for a few days and missed everyone.  Glad you found this group - this forum has been of so much help and support to me and I can't imagine going through the "AN Adventure" without all these folks.  As I commented on my blog the other day, I have made so many new friends here - hopefully you'll find the same!

It's been a beautiful week here in New Jersey by the way - sunny and temps in the 50's.  And, no, for all who are wondering - Beautiful Day in New Jersey is not an oxymoron! ;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

Will

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Re: just introducing myself
« Reply #20 on: November 12, 2008, 08:38:03 pm »
Sue, Nancy, and Debbi,

Great to hear from you all. You’re all so positive which is definitely something we need to keep in the front of our recoveries.

Nancy, you’re right, I can’t believe I misread mm for cm. Big difference, and wonderfully in your favor and also much more of a candidate for GK. Hope you get some snow soon.

Sue, yours and my situations and outcomes uncannily do appear very similar and I’m so glad that you feel like your physician was a perfect match for your needs. So glad you are doing well.

I will say that for as positive as I have been in my postings since surgery, yesterday I found out what people mean by the “brick wall� 2-3 weeks post-op. It is never a dull moment healing up from these things. When going for walks in the bright sunshine, nice weather, and you’re feeling good it’s like “this is nothing, I feel great�. But after vestibular rehab, or just some days when you have no energy and you have the all day headache, what a set back, the brick wall some are talking about. It’s so difficult making that balance between pushing yourself to get better or just laying back and taking the healing break that you’re supposed to. Up one day and down the next rollercoaster.

One fantastic event that took place this week is that my taste buds came back almost overnight. Before surgery I lived to eat, but after surgery it was a real chore because nothing tasted like it should, not necessarily metallic, but just not good. Within 48 hours all that changed and now everything tastes like you expect. Some of you, like me, may have also experienced throat dryness and have had to choke down some of your food like bread and chicken. That is still going on, but I try to eat food that is very moist like soup or Wheaties. I was wondering over that past couple of weeks how long it would take for taste to return, if it ever would. Wonder what the statistics are on that.

I wish you all the very best,

Will
dx - Left AN 1.5 x 1.5 x 1.6 cm   8/1/08
surgery - 10-20-08   translab, SSD
Dr. Hegarty, Co. Springs

Debbi

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Re: just introducing myself
« Reply #21 on: November 13, 2008, 11:45:45 am »
Hey Will-

Glad your taste came back!  Believe it or not, that was one of the things I worried about a lot before surgery - like you, I love to eat and I just couldn't imagine life without taste! 

Don't worry about hitting the walls sometimes.  I'm slightly more than six months post op and I still hit walls sometimes.  Each week gets better, though.  Give yourself time and be patient with yourself.

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

Nancy Drew

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Re: just introducing myself
« Reply #22 on: November 13, 2008, 01:01:51 pm »
Will,

Glad you are still on your way with the good attitude even though you have hit a few bumps.  I had some good news today.  I thought I was having some hearing issues, and when I had a hearing test today, the hearing in my AN ear is the same as before GK.  Maybe I had some allergy/sinus stuff going on that threw me off.  Keep on posting.  You inspire us, and this board is a great support.

Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

calimama

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Re: just introducing myself
« Reply #23 on: November 13, 2008, 08:31:35 pm »
Hi Will, thanks for sharing your story and helping out all those here looking for more information.

Wishing you a speedy recovery with more good days ahead.

Trish in Toronto Canada
Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

bltfollis

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Re: just introducing myself
« Reply #24 on: November 13, 2008, 09:06:45 pm »
great to have you will glad things are well, by the way whats a BAHA


bill

Nancy Drew

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Re: just introducing myself
« Reply #25 on: November 14, 2008, 05:27:38 pm »
Hi Will,

We got our snow today.  Thanks for sending it up this way.  However, it didn't cover the ground much, and it melted by the afternoon.  Still, winter is here and fun time in the Rockies is on its way.  Hope you are doing well. 

Nancy ;D
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

MAlegant

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Re: just introducing myself
« Reply #26 on: November 14, 2008, 06:35:04 pm »
Hey Will and welcome.
Sounds like you are doing really well.  We feel good, we push, feel bad, stop pushing, and so on until you're pretty close to good as new.  Keep up the good work.
Best wishes,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.