Author Topic: Nothings Working...  (Read 17440 times)

cin605

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Nothings Working...
« on: May 26, 2009, 01:35:30 pm »
I have been doing physical therapy/vestub rehab massage chiropractic all of these hoping to see some improvement in my balance &
pain n head neck shoulders I am seeing neaurologist...everything i can think of....am i going to feel this way forever?
I have one yr. postop visits coming the 15th w/ ENT,neaurosugeon,MRI,hearing any good ideas or questions i should be asking when i go back to dartmouth?
I think i need a list.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

ppearl214

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Re: Nothings Working...
« Reply #1 on: May 26, 2009, 07:27:38 pm »
I wish I had answers. I did not have surgery, so I can't fully understand. I can share that its been approx 1 yr post-op.  I have heard many on the forums talk about how sometimes, it does take a bit of time to feel better. I can't sugar coat and say things will get better. I or we have no guarantee of that. I can offer hugz. I can offer a shoulder.  I can offer friendship.  I wish I could cure what ails you but I can't. But, know this... I am SO cheering you on, sending wellness vibes that things start to get better sooner than later.  I am cheering you on and hoping on the 15th, you get answers you seek.

Please hang in there. I AM cheering you on (although I look crappy in a cheerleading outfit!) and hoping things improve soon.

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

wcrimi

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Re: Nothings Working...
« Reply #2 on: May 26, 2009, 07:56:35 pm »
How often do you do your balance exericses and what kinds of things are you doing?
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

jazzfunkanne

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Re: Nothings Working...
« Reply #3 on: May 27, 2009, 03:57:36 am »
i am the same age as you, i didnt see a difference till about 2 years post op esp with the turning of the head without losing my balance, when you are out walking , turn your head from side to side slowly , i think my neigbours think i am being nosy looking in all the houses lol, also the standing on one leg is a good exercise.
over 4.5cm AN removed dec 06

ppearl214

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Re: Nothings Working...
« Reply #4 on: May 27, 2009, 05:37:44 am »
...when you are out walking , turn your head from side to side slowly , i think my neigbours think i am being nosy looking in all the houses lol, also the standing on one leg is a good exercise.

Ah, the "wonky head" strut! :D I know it well and also do the same thing when I walk the dog.  It certainly does help! :)
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

cin605

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Re: Nothings Working...
« Reply #5 on: May 27, 2009, 09:10:07 am »
I am doing the exercises dailey,Therapy weekly.Excersises i do are turning head back n forth while focusing on objest on the wall
then doing it walking.turning my head up n down side to side.closing eyes standing in place & marching.Walking dailey.
bending streching.Just normal  stuff vacume,dishes laundry dinner keeping up on the bathroom cleaning ect.
I am having a hard time dealing w/ public places...sensory overload.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

JudyT

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Re: Nothings Working...
« Reply #6 on: May 27, 2009, 11:12:10 am »
Cin........I too am having great difficulty with balance issues....It's really hard to force yourself to do stuff but I do it. It seems there are too many issues to deal with. Yesterday was a good day but I pushed it a bit to far. Today I am slower than slow but trying to figure out how to pick myself up and go again. I want to make some jam for my kids and grandkids.....berries are plentiful here in California....so now is the time to do it. I am just struggling to get the motivation going.........Soooooo sorry you are struggling with this aggravating issue too.
Judy

stoneaxe

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Re: Nothings Working...
« Reply #7 on: May 29, 2009, 12:33:48 am »
I hope you don't mind me asking your age and what kind of physical condition you are in. A little over a year and a half ago I was bouncing off walls, occasionally falling down, often couldn't drive. Then I found standup paddleboarding. I'm not saying this is for you. But I was doing all those same exercises. Tell me...do some of those things really sound like exercises to you? I'm 51 years old and I was well overweight, I've lost about 55 lbs, and I'm much closer to "normal" than I thought I would ever see again.
Depending on your age and condition I suggest you find yourself something you can be passionate about that challenges your balance to the max (with little danger of injury) and do it constantly. I went from falling every couple of minutes in flat water to surfing in overhead high waves. My normal workouts now are going out in rough, choppy weather, the choppier the better. The best part of it all. It not only gave me my old life back....it made it better. I'm having so much fun I feel like a kid.
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

suboo73

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Re: Nothings Working...
« Reply #8 on: May 29, 2009, 05:23:39 am »
The best part of it all. It not only gave me my old life back....it made it better. I'm having so much fun I feel like a kid.

Cin605, 

I hope you keep motivated to continue the exercises or whatever else you can do, to get closer to normal balance, etc.
I have not had any treatments yet, but get constant inspiration from reading Bob's paddleboard experiences and how it changed his life.

My thoughts and prayers are with you for your return doc. visit.
Keep posting, keep asking questions!

Sincerely,
Sue

suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

cin605

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Re: Nothings Working...
« Reply #9 on: May 29, 2009, 09:26:13 am »
Stoneaxe-I am 43 in good physical condition.115lbs.5ft...i have always been very active as i owned my cleaning bussines for 10 years.
The cleaning i did required carrying a vac up 5 flights on both ends of many buildings(restored mills)&vacuming down.
I walk dailey.I am looking intgo a stair master to get more exersise.Paddleboarding sounds a little scarey to me since i have always been afraid of drowning(maybe due to siblings dunking me as a child)i also despise cold water.
Thank You all for your hugs &support.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

CHD63

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Re: Nothings Working...
« Reply #10 on: May 29, 2009, 09:34:46 am »
I can identify with the sensory overload you are experiencing.  Sometimes in the middle of shopping (which I actually never did enjoy that much   :o) I will have a sudden attack of "I cannot stand the sensory overload, gotta get out of here!"  All of the loud noise, bright lights, close quarters, etc. seem to build up.  I never had this happen pre-AN surgery.

I am so glad I am retired from teaching.  Cafeteria duty now would be a nightmare for me!

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

JudyT

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Re: Nothings Working...
« Reply #11 on: May 29, 2009, 11:19:36 am »
Clarice........I too have sensory "dysfunction".....can't....don't want to be....in competition with all of the elements. I have to leave with the overload.......to find relief. I have actually left my "would be" purchases in the basket or counter to get out of it.
Judy

cin605

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Re: Nothings Working...
« Reply #12 on: May 29, 2009, 11:42:46 am »
I used to love shopping both grocery & just browsing now i am in & out asap.When the feeling hits there is deep sense of urgency to get out of the store & home away from everybody & everything.My balance goes bazerk & i turn really pale white my mom can just look at me & say we need to get you home.Are you o.k. to walk by your self??& then than just magnifies it becouse i get upset that i can not function at a normal pace.So now i grocery shop every 2 weeks & i am considering buying meat packs.
Then the liitle guy on my other shoulder says go to the store the more you force yourself to do it the more you get used to the feeling.I am torn!
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

wcrimi

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Re: Nothings Working...
« Reply #13 on: May 30, 2009, 07:16:31 pm »
I am doing the exercises dailey,Therapy weekly.Excersises i do are turning head back n forth while focusing on objest on the wall
then doing it walking.turning my head up n down side to side.closing eyes standing in place & marching.Walking dailey.
bending streching.Just normal  stuff vacume,dishes laundry dinner keeping up on the bathroom cleaning ect.
I am having a hard time dealing w/ public places...sensory overload.


Try these from time to time (in order of difficulty).  When you feel really comfortable with one (and it make take several weeks) then move on to the next one.   

1.  Stand heel to toe for 30 seconds then switch feet. (multiple times)
2.  Walk heel to toe
3.  Walk backwards heel to toe
4.  Stand heel to toe looking side to side
5.  Walk heel to toe looking side to side (This one is a killer)  I've been doing this for months and still can't master it.  But I know that's a good thing because it's stressing me.

Also, I have found that focusing on an object while looking side to side sometimes really helps me a lot (but not always).  I do it every chance I get.  Sometimes in the shower, a lot of time while at work when I'm slow, etc... The more I do it the more it helps me.  I have seen tangible improvement in the last couple of months in that area.



 



1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

cin605

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Re: Nothings Working...
« Reply #14 on: June 01, 2009, 09:03:05 am »
Thanks for input will try these exercises.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old