Author Topic: Almost 2 years on... will I ever feel 'normal' again?  (Read 10734 times)

nancyann

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Re: Almost 2 years on... will I ever feel 'normal' again?
« Reply #15 on: February 28, 2009, 09:26:44 am »
Fine by me cin, will that be 2 butts a landing ? ! !
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
right facial paralysis
good to go.

cin605

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Re: Almost 2 years on... will I ever feel 'normal' again?
« Reply #16 on: February 28, 2009, 10:47:46 am »
That depends if i sway to left on the way down.if you lean to the right maybe you can compensate so they say  ;D i'm ready i took my nausea pill about 20 minutes ago so it shouldn,t be to messy getting up on the soap box...then again it also depends how many steps i have to take to get to it!
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

nancyann

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Re: Almost 2 years on... will I ever feel 'normal' again?
« Reply #17 on: February 28, 2009, 12:09:56 pm »
You know what ? - I think we can do it !  But just to be on the safe side,  let's strap a pillow around our butts.....
Always good thoughts,  Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
right facial paralysis
good to go.

klangel

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Re: Almost 2 years on... will I ever feel 'normal' again?
« Reply #18 on: February 28, 2009, 01:12:39 pm »
hey ron   i know exactly how you feel. we all have this invisible disability. if we had no legs or something it would show but we look so normal. i actually had a guy in a hurry in sams club come up behind me on my deaf side with one of those ginormous carts and i suppose he said excuse me but ofcourse i didnt hear him and then he just proceeded to ram into me with the thing and ofcourse i have no balance and fell over. he jst went on his way cursing me under his breath while i tried to get off the floor! and yes no one can understand how stress affects us. it is a whole different perception! almost feel at times i ought to be locked up and i used to eat stress for breakfast lunch and dinner too and an occasional bedtime snack! i guess thats why even my own family cant seem to get it. my thoughts are with you and i totally understand what you are going through. do you have random multiple noises 24/7 or is your noise a constant? just curious. keep trying. i am.     anne marie when i read your post i thought wow thats me! i used to be such an even tempered person and very kind and now i sometimes think i am the meanest darkest creature on earth. i actually scared my husband to death recently by having a terrible raging fit and screaming obscenites directed at god! wow. that is so not the person i used to be. i guess i just have to face that i will never be the same again and getting so angry sometimes is just a part of the new me. i do get really sick of it though! i know how you feel. ill be thinking of you and hoping for some better days. they do come sometimes even if far and few between. savor them while theyre there!   hi to everyone else. love you all, kerri

ernie h

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Re: Almost 2 years on... will I ever feel 'normal' again?
« Reply #19 on: March 05, 2009, 05:50:18 pm »
hi hannah and everyone.my story sounds very much like yours.my surgery was done aug 07.i i had hearing in my right ear for 2 wks following surgery.then it just shut off.doctors are puzzled.i too like you have serious fatigue.my balance/dis-equilibrium is not good.i'm going next week for a v.e.m.p.test and 3 1/2 hours of balance tests.not looking forward to that.it's very diffucult to keep smiling.i also have a tendency to complain which i always resent after doing it.what helps me at times is knowing that many people have ut much worse and i try to remember that.but at times that's little consolation when you're just trying to do everyday things you used to take for granted.i wish i had the answer to tell you it will get better.i hope and pray that it does all my best to you sincerely; ernie.
ernie.r side ana removed aug 07 by dr peter black and doctor quinton gopen.brigham and womens hosp boston mass.

ernie h

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Re: Almost 2 years on... will I ever feel 'normal' again?
« Reply #20 on: March 05, 2009, 05:52:52 pm »
hi hannah and everyone.my story sounds very much like yours.my surgery was done aug 07.i i had hearing in my right ear for 2 wks following surgery.then it just shut off.doctors are puzzled.i too like you have serious fatigue.my balance/dis-equilibrium is not good.i'm going next week for a v.e.m.p.test and 3 1/2 hours of balance tests.not looking forward to that.it's very diffucult to keep smiling.i also have a tendency to complain which i always resent after doing it.what helps me at times is knowing that many people have ut much worse and i try to remember that.but at times that's little consolation when you're just trying to do everyday things you used to take for granted.i wish i had the answer to tell you it will get better.i hope and pray that it does all my best to you sincerely; ernie. p/s my surgert was also 14 hrs supposed to be 4.
ernie.r side ana removed aug 07 by dr peter black and doctor quinton gopen.brigham and womens hosp boston mass.

linny

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Re: Almost 2 years on... will I ever feel 'normal' again?
« Reply #21 on: March 14, 2009, 05:06:01 pm »
 I sympathize with you I had a 3cm removed about 2yrs ago(2 surgeries)  and I couldn't go back to work. (mail carrier) I finally got disability retirement. ( not much money) but whats a woman to do? needless to say I have now lost my home, still feel like poop all the time ( today terrible headache).  sometimes I feel like it will never get over and maybe it wont. :'( I was even told in 6 months my facial  paralyzes would go away ( it didn't) >:( the list goes on. But then I'm an old lady  :) 57 in July   O MG   anyway good luck everyone. at least we have each other.
Linda-2yr post AN 3-cm left side.  OHSU hospital , slow recovery for me. But then I had to have 2 surgeries with complications swelling of brain,

stoneaxe

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Re: Almost 2 years on... will I ever feel 'normal' again?
« Reply #22 on: April 08, 2009, 08:55:55 pm »
I'm 5 years post radio-surgery. At 3.5 years i was thinking things were'nt going to get any better...frequent headaches, bad dizziness and vertigo, SSD and tinnitus. I was approaching 50 on a downward spiral and felt there wasn't much I could do about it. I was accepting of it...not happy....but figured i'd had a pretty good life and there was still much I could enjoy. Then a few things happened....topomax for the headaches...under control now for the most part....and my brother gave me the best gift of my life, a standup paddleboard to use as therapy. The dizziness and vertigo were the most difficult things for me....standup paddleboarding ended up being the answer. I've learned that by pushing myself to extremes of balance (beyond even what I had done pre-AN) I was able to make "normal" possible again. I still have some headaches and dizziness and vertigo but I'm functional. Truthfully...life is even sweeter now than it was before my AN diagnosis. I've come to appreciate that my life is special...i have no wish to return to normal.

Today I'm 51 years old, in the best shape I've been in since I was in my 20's. Mentally I'm 18 again and look forward to everyday...especially if there are waves.... ;D.

Find something you can be passionate about that will provide therapy and work harder than you ever thought possible (it took me 3 months of falling off my board every 30 seconds before I started to get it). This is me a couple weeks ago after 1.5 years of hard work...
http://www.youtube.com/watch?v=GR2zk7mo97I
and even a little crazier...last october in a nor'easter:
http://www.youtube.com/watch?v=MOmZung9fv4

Don't give up...find your silver lining.

Bob
« Last Edit: April 08, 2009, 09:11:55 pm by stoneaxe »
Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

Soundy

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Re: Almost 2 years on... will I ever feel 'normal' again?
« Reply #23 on: April 08, 2009, 11:55:22 pm »
I was beginning to think my life would never get back to normal ... but since being on lyrica and having fewer and not a strong headaches thinks are slowly changing ...

I walked about 10 miles at Shiloh Battlegrounds Saturday and did it without getting a headache ... the
background still seemed to be moving of its own accord and I swaggered like a drunk for a good part
of the hike ... but I did it ...

I must add that I got home around 8:30 and was asleep by 8:45 ...didn't even bother with a shower...just
stripped off clothes tossed on a clean t-shirt and slept til about 10:00 Sunday morning ...  was groggy and
legs and sides from waist up to armpits were sore from my constant adjustment of muscle tautness to keep
balance ... had my sister and her boyfriend coming in that evening (they do Civil War reenactments and we had
went to watch them) ... had to get a place ready for them to crash along with my mom and also have a good
meal ready...southern hospitality and all ... beside we are trying to impress this guy ...I think my "I will never marry ...
men are pigs "
sister is gonna get hitched soon ...

anyway ... I was semi conscious and not best company by the time they got here and we all went to bed early
because after two days of fighting the Civil War they were wiped out too... got up Monday and took kids to school ...
came home and fed my guests breakfast ... they left here around 10:30 with 5 hours more to drive to get home ...
my grown son and I were going to watch a movie ... I don't remember the disk ever starting and next thing I know
it was almost 2:00 and he said he was leaving ... Yesterday I napped off and on all day and today I was back to my
new normal afternoon nap of about 2 hours

what I am trying to convey is things may never be what we knew as normal again ...I used to hike with Scouts and
do 40 or more miles in a weekend and go to work Monday as if I hadn't done anything ... but things can and do  get
better...aside from the muscle spasms and soreness and the incredible fatigue I accomplished a hike that a few
months ago I wouldn't have been able to do
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

 


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