Author Topic: Hope and Inspiration for the Newly Diagnosed  (Read 35382 times)

ppearl214

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #30 on: September 04, 2006, 07:57:38 am »
Holly, you have come to the right place for a wealth of information, a terrific source of hugs, shoulders and on occassion, giggles.  Know that we are all here to help you through each step you take during this AN journey.

This thread is filled with wonderful inspriation... and know that you can take inner peace and strength from all of us... just as all of us have leaned on each other. 

We're here for you.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

comfortzone

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #31 on: September 05, 2006, 08:42:54 am »
You people are amazing! So much support and information.

Yes - I was definitely freaking out initially! I have now decided that I need to be healthy and positive in order to be strong and handle this on all levels. It's not everyday that you find out you need brain surgery and my initial reaction was to man the panic stations!
After some reading and great stories shared here I see that I will survive, things are just different than they were before and that's ok with me.

I do have symptoms that I didn't undertsand - after being diagnosed they make sense. I have fullness in the ear, tinnitus which is becoming constant, occasional vertigo and a bit of a nauseated feeling in general. I do find that I get headaches, sometimes they are all over and I think those ones are stress related as my whole scalp gets very tight. I do get headaches or pain on the AN side, usually sharp and sudden but it seems to pass, sometimes I clutch my head for second...anyone else get that?

Symptoms are a big part of what I have questions about...yesterday I was driving and had a sudden headache along with very strange burning sensations and vertigo. I think it may have been caused by sun beating down on my head and the light flashing throught the trees. It was very scary but once the sunroof was closed and the sunlight blocked out I felt much better. I was on the verge of pulling over but then I was ok. Does this kind of stuff happen?? I travel alot for work and am concerned about something happening when I am out on the road alone. Do your symptoms ever send you to emergency or do you just ride them out because you know what the cause is? I don't know how to judge...

I have also found that napping makes me feel a lot better. If I have a little rest the tinnitus seems to decrease and I just feel refreshed. Do you guys find this as well? I will not complain if I have a good reason to have a nap!

I had a second MRI a week and a half ago so that will tell me more about the tumour, I'm just waiting for the results. The first scan showed a 7mm tumour but no other dimensions, I hope it was 7mm at it's largest point! I am in Vancouver Canada and have found an AN Association up here too so I am checking both boards for info and found some stuff about treatment options locally.

Thanks for beign here and I hope everyone's having a good day today!
   
8 mm left side AN Retrosigmoid surgery with Dr Akagami at Vancouver General Hospital April 3, 2014 SSD

hollyjo

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #32 on: September 05, 2006, 11:21:15 am »
I concur - this site seems to be manned by people with considerable knowledge - a relief, after some of what I have read.  I want to also say thank you for the warm welcome.   :) 

My symptoms are intermittent at this point - some vertigo and dizziness, headaches (I'm not prone to headaches and these seem to all be on the right side of my head, the side where the AN is) and some hearing loss - I also get "strange" feelings from time to time and I ALSO wondered about the "flashing" effect of the sun through the trees.  It's hard to describe - almost like a tingling but then again it isn't.  I almost pulled over once or twice - afraid I was having an aura and might start seizing.  After a moment or two the strange feelings went away.  Are seizures ever associated with AN?  I find that wearing sunglasses also helps.

Thanks,

Holly


Right side facial schwannoma, size unspecified
Mid fossa 11/06 (facial nerve severed; nerve graft at time of procedure)
Drs. Arriaga & Baghai
Migraine & vestibular issues, right side facial paralysis; some movement in lower part of face
Gold weight/lower lid resection - right eye: 11/10.

tatianne

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #33 on: September 05, 2006, 11:33:41 am »
welcome corinne and holy....
im new here as well and i have received a lot of help and understanding from the members on this board, i know that you will too.
Corinne im also from Canada, Montreal to be exact.
My AN is 8mm and we share most of the same symptoms, including the scalp pain thing.
Please let me know what happens with your second MRI and contact me anytime, i would like to exchange thoughts with.
In the mean time my prayers and thoughts are with you, Apparently( according to everyone on this board) we will be OK, and i trust these guys.
T
Waith and Watcher
July 2006 8mm
Jan 2007 9.5 mm
Jan 2009 1.4 cmm x 5mm
GK surgery completed on May 4, 2009 in Sherbrook Quebec, hoping and praying this will be the beginning of the end of my AN......

Obita

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #34 on: September 05, 2006, 03:08:42 pm »
Hello new ones:

I ignored two episodes while driving before I was diagnosed.  Both times (about 6 months apart) I got the whirlys and thought:  What the hell was that.  The feeling was gone in 5 seconds.  Those were my 3rd and 4th red flags.  My 1st was tinnitus which I ignored and the 2nd was when I was goofing around at work and tried to dance like the go go girls of the 70's..........I almost fell over I was so dizzy.  I thought to myself,  don't do that again.  You are too old.  5th red flag, 5 days of the whirlys, vomiting, thought I had a bad flu etc....went to urgent care.  The Dr. there gave me some Dramamine, mentioned my PCP might want to do a MRI to see if there is a tumor.  I thought yeah right......its not a tumor......then my PCP treated me for a inner ear virus for two months.  Then my orthopedic surgeon told me to get to the bottom of the ear thing before my first total hip. Finally my PCP listened to me as I told him what my ortho said about my complaint re:  fullness and something is just not quite right - off to the ENT, hearing test (bad and didn't even know it) and the MRI was ordered.

I have never had a headache.  Not even in the days after surgery.

Two and a half years after the MRI, I am tumorless, deaf in the left and doing great.

Best of luck to you both, Kathy



Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Larry

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #35 on: September 05, 2006, 05:22:17 pm »
Kathy, thats great news.

For the other newbies, the so called experts say that the AN doesn't cause headaches but many of us on this site are not in total agreement with that. personally, I never had a headache in my life prior to surgery and have had them (nasties) since and that's approaching 4 years now. Having had middle fossa surgery, I am NOT and advocate for surgery due to the trauma I have gone through. My AN has also grown back - i will be attacking it with radiation treatment when I need to.

regarding other symptoms, tinnitus is a reflection of hearing loss and from what I understand, the more hearing loss you have, the worse the tinnitus. I am virtually deaf in my AN ear and have very loud tinnitus but I've got used to that and when my mind is distracted, it's not really a major issue for me.

The other symptoms you have both described tell me that your AN's might be pressing on nerves and hopefully not the brain stem (MRI will tell you) Don't panick and don't get stressed.

Oh, whatver hearing loss you might have now, regardless of the treatment, will not be recovered. That is one of the major decisions you need to make. Your AN's are small right now and watch and wait is probably appropriate but bear in mind that if your symptoms get worse, you may need to take some action.

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

comfortzone

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #36 on: September 05, 2006, 06:34:07 pm »
Great stuff - I am so glad I am not alone and wondering what is wrong with me. I've had the "whirlies" a few times now, it's good to have a name to go along with the feeling. Another thing that I never knew was that going deaf would be loud! I am a music lover and have found that listening to music seems to make the ringing less noticeable. It has to be the right kind of music though ;) - it can go the other way too!
8 mm left side AN Retrosigmoid surgery with Dr Akagami at Vancouver General Hospital April 3, 2014 SSD

ppearl214

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #37 on: September 06, 2006, 06:31:20 am »
So many newbies, so many stories, experiences, thoughts and huggles to be shared with you all.  *waves hello to all the neighbors north of the border*

You all have so many symptoms, so many anxieties, so many questions.  Know that many of us out here have chosen many routes of treatments.  Many of you note small growths, so the options are there for you.  All I can share is... take a deep breath... a very deep breath.  Read here as much as you can tolerate without feeling overwhelmed.  Know that this has affected us in so many different ways, but remember one very important thing please.... many of us that are "posties" (post-treatment) recognize that life certainly goes on.    Some with temporary after affects, some with permanent after affects BUT, we are able to move along. 

Know one most important thing... we do know what it is to be in these shoes, to feel the anxiety, to feel the ups and downs of this AN journey.  But, most of all, know that we are here for you.... just as you are here for us. :)

Hang in there.... through this journey, we remain dedicated to each other (as you will see in other posts).  And we are dedicated to help you get through this process as well.

BTW, drinks are being served on the Sun Deck.. they're watered down but up on the Sun Deck, the sun does shine on all of us! :)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

tatianne

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #38 on: September 06, 2006, 08:57:30 am »
thank you phil,
it is very difficult being in these shoes right now, as im sure you know.....
im leaning very much towards GK right now, especially since my AN is so small, i feel
like the chances for a good outcome are high.
Ive only lost maybe half of my hearing in that ear, I would like to keep what i have and avoid any
facial problems if I can.
Thank you for your words of encouragemetn to us newbies.
T
Waith and Watcher
July 2006 8mm
Jan 2007 9.5 mm
Jan 2009 1.4 cmm x 5mm
GK surgery completed on May 4, 2009 in Sherbrook Quebec, hoping and praying this will be the beginning of the end of my AN......

Lisa Peele

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #39 on: September 06, 2006, 08:59:15 am »
Quote
All I can share is... take a deep breath... a very deep breath.  Read here as much as you can tolerate without feeling overwhelmed.  Know that this has affected us in so many different ways, but remember one very important thing please.... many of us that are "posties" (post-treatment) recognize that life certainly goes on.    Some with temporary after affects, some with permanent after affects BUT, we are able to move along. 

So well said, Phyl.  I am a firm believer that (a) we are never given more than we can handle, and (b) we don't truly know what we can handle until it's been given to us!  We all have so much strength and grit within that--when untapped--is unknown.  Going through the AN diagnosis/treatment (and making it through, no matter how) shows that we are tough, we are resilient, we are blessed.

I've had my fair share of difficult experiences in the last 10 years and what I've learned is that it's all in your perspective...if you feel like a victim, you won't make it through the tough stuff intact.  You will be paralyzed at times by the fear and anxiety that go along with trauma.  If you (a) accept that bad things will happen, but (b) choose to see the blessings within the challenges--and embrace them--then you will rise above all the pain...and you will find peace.

When asked by a reporter:"What, in your opinion is the most important question facing humanity today?" Albert Einstein replied, "I think the most important question facing humanity is, 'Is the universe a friendly place?' This is the first and most basic question all people must answer for themselves."

If we envision the universe as inherently friendly, we are more apt to look for the great things that happen in times of struggle.  We are more open to the subtle things that occur in daily life--whether things are going great or not great at all--and can see positive undercurrents everywhere...even in the worst of times...
 
Lisa Peele, 38
Dublin, OH
4.3 cm X 3.3 cm (right)
Translab.
House Ear Clinic (Friedman and Hitselberger)
June 14, 2004

krbonner

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #40 on: September 06, 2006, 09:20:59 am »
I've had my fair share of difficult experiences in the last 10 years and what I've learned is that it's all in your perspective...if you feel like a victim, you won't make it through the tough stuff intact.  You will be paralyzed at times by the fear and anxiety that go along with trauma.  If you (a) accept that bad things will happen, but (b) choose to see the blessings within the challenges--and embrace them--then you will rise above all the pain...and you will find peace.

Beautifully written, Lisa.  Just this morning, I found another (small) positive in all this - and I do keep looking for them.  I volunteer at a local hospital, which requires an annual TB test.  With proof of a chest xray, however, you get out of the TB test for 7 years.  And, as it so happens, I'll have a chest xray on Friday as part of my pre-op appts.  So, no TB tests for the next 7 years!  Woo-hoo!

It's small, I know, but I always take what I can get.   :)

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

ppearl214

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #41 on: September 06, 2006, 09:38:59 am »
Tatianne,

You're welcome.  I have to say this... *watches peanut gallery covers their ears*....... I know many of us have learned life is all too short.  There are inconveniences in life, some affecting daily living, some not.  For me, I only let them affect me if I let them.  I can choose to either let them interfere with my daily quality of life... or, I can choose to "deal" with what is going on, never forgeting and move along.  Yes, I have lost some hearing. Yes, my balance is off.  Yes, I have many other post-treatment issues (as well as other major medical issues) but... and a big BUTT :D here....I have my inner peace. I know in my heart that I have made the best possible decisions for me and my overall well-being.  I can learn to deal with the "inconvenience" of hearing loss, as... I still have my other ear.  I can deal with the balance issues... as... I am still able to walk, even though my cane is now my permanent 3rd leg.  I can deal with the tinnitus... as... it reminds me that my body likes to talk back to me on occassion to let me know it's pissed but that I can endure.

T, regardless of what treatment option you choose (and GK is a terrific option, if that is what you decide), know that you can deal with all that is going on and what will come your way.... and if you lose a little hearing, that's ok.  If you get some facial numbness, hey, that's ok.   To me, regardless if temp or perm outcomes... we are all here.  We are here for each other. We carry the torch for those newbies that come along, just as you will for future AN patients.  You and all others that are newly diagnosis will learn that yeah... this affects us... but only as much as we let it.

Hang in there T... you're going to be fine! :)

sorry all... I OD'd on coffee this am! :D

Phyl

P.S.  Lisa, thank you.  I couldn't agree with you any more than you stated. Well stated! :)

thank you phil,
it is very difficult being in these shoes right now, as im sure you know.....
im leaning very much towards GK right now, especially since my AN is so small, i feel
like the chances for a good outcome are high.
Ive only lost maybe half of my hearing in that ear, I would like to keep what i have and avoid any
facial problems if I can.
Thank you for your words of encouragemetn to us newbies.
T
« Last Edit: September 06, 2006, 09:49:52 am by ppearl214 »
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Gennysmom

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #42 on: September 07, 2006, 02:53:42 pm »
So well said, Phyl.  I am a firm believer that (a) we are never given more than we can handle, and (b) we don't truly know what we can handle until it's been given to us!  We all have so much strength and grit within that--when untapped--is unknown.  Going through the AN diagnosis/treatment (and making it through, no matter how) shows that we are tough, we are resilient, we are blessed. 

Well said Lisa!!!  I still can't believe I'm 2 months out and feel as good as I do!  There are some moments in the day I even forget I'm still recovering from some facial paralysis that's taking it's time in improving.  That's because I know it's there but I try not to dwell on it....I find myself seeing other health issues out there and constantly saying, "well, I'm sure glad it wasn't THAT", more often than wishing I had some lesser issue.  And, silly as it sounds, I'm glad I'm a surgical postie finally, I'm glad to have the thing out and be able to describe to newbies what it was like, to be over the unknown.  I truly believe that knowledge is power and the knowledge, encouragement, and friendship I found here makes this journey so much easier....don't believe those darn Doctors out there that try to keep patients away from our site by saying the only people that are on here are ones with complications...it's just not true!!  There's a little bit of everything here and it's helped me immensely!!
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

Lisa Peele

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #43 on: December 07, 2006, 03:03:33 pm »
I am thrilled to see so many good outcomes!  If you've recently had treatment and want to add your story here...please do!
Lisa Peele, 38
Dublin, OH
4.3 cm X 3.3 cm (right)
Translab.
House Ear Clinic (Friedman and Hitselberger)
June 14, 2004

krbonner

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #44 on: December 07, 2006, 06:39:41 pm »
Great idea bumping this up again!  I'm thrilled to be able to add my story.  In many ways, I feel guilty posting it - my outcome has been so amazingly good, and I know there are some that have lingering complications (major and minor).  I just don't want anyone to think I'm "gloating" - I just want the new folks to know they aren't doomed to horrible consequences!

Anyhoo...

I had translab done Sept 13, 2006 (12 weeks ago).  The surgery was 11.5 hours and (according to the surgeon's notes) quite laborious.  His notes talk about debulking the tumor in smaller and smaller and smaller pieces b/c he couldn't actually see my facial nerve.  But in the end, he was very confident that my AN is completely gone.  I was in ICU 24 hours and in the hospital all of 5 days.  I don't remember a lot of the hospital, but I wasn't nauseated, or dizzy, or in all that much pain (except for one 3 hour period 2 days post-op).  Within 48 hours I was walking on my own, albeit slowly (as long as I didn't move or turn suddenly).

Aside from 2 days of double vision immediately post-op, I've had none of the typical complications of AN surgery.  No dry eye, no facial numbness or palsy, no taste changes, no vertigo or balance issues, no fatigue, no ongoing headaches (I did have mild ones for about 4-5 weeks post-op, managed with Advil).  I am deaf on that side (a known outcome of translab surgery), but I was pre-op anyway.  In many ways, I actually feel better than I did for the six months before the surgery - I have more energy, am not tired as much, and I'm not tripping on words the way I was over the summer.  (I'd blamed all that on my kids - who knew!)

I do have one lingering complication - numbness in my left hand from a pressure bruise on my left funny bone sustained during the surgery.  Apparently, that elbow wasn't padded appropriately and not moving (not even tiny twitches!) for almost 12 hours caused a deep bruise with nerve damage.  I still don't know if that will ever resolve - I need to follow up with a neurologist.

Seriously, aside from the deafness (which was there anyway) you'd never know I had my skull opened just three months ago for a long, complicated surgery.  I truly feel so blessed.  And it's good to know that when everything lines up just the way it should, and you have a lot of luck (and pirate socks!!!) thrown in, it can all work out really well.

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

 


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