Author Topic: I am new to this and had the operation Jan 21 of 2007.  (Read 14493 times)

gb4821

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #15 on: March 07, 2007, 02:41:04 pm »
Thought I wuld give an update ont he thread.

Went to the ENT Doctor yesterday and my scare is looking good.  He also recieved the information about the Transear aids and told me that the Audioigist had herad about this and said that it is cutting edge.  She sounds excited about it too!!!!  I will let you know about that when I get my appointment with her.  As far as me I am still off from work for at least 2 more weeks to get my balance back to a more normel state but the doctor did set me up with rebah for it as well.  I still get the headaches but they are controled with medicine.  My tongue is still numb on the surgery side but the rest is working alright.  As far as the toothache I go in next week for maybe a root canal.  Not sure why these things happen in 3's but I also when to me eye doctor and my eyes are worse then they were a year ago.  I think that has contributed to my burriness but I did notice my eyes focusing better a couple of days before my eye appointment.  I feel stronger each day and try to walk more to help my head and body to talk better together.

Overall it is going good and hope to be doing more within this next week.

Thanks for your help and support,

Greg Brown
Greg Brown
1.5 cm AN Removed 1/22/07
Suboccipital Procedure:OHSU ( Portland Oregon); Dr. McMinemee and Dr. Delishaw
Complete removeal of tumor but hearing nerve on left side was severed.

Battyp

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #16 on: March 07, 2007, 06:10:46 pm »
Greg,
  My eyes were funky after surgery.  It took a good 6 mos before they seemed normal.  I just had them checked 18 mos out and need new glasses.  I seriously doubt it's from surgery..more like old age  LOL (they say after you hit 40 you need bifocals  LOL)  My teeth bother me with sharp pains on my an side.  Is that what's bothering you?  I'd put off a root canal as long as possible!  Especially if it's on the an side with numbness it could be your nerves zapping.

gb4821

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #17 on: March 08, 2007, 11:45:45 am »
Greg,
  My eyes were funky after surgery.  It took a good 6 mos before they seemed normal.  I just had them checked 18 mos out and need new glasses.  I seriously doubt it's from surgery..more like old age  LOL (they say after you hit 40 you need bifocals  LOL)  My teeth bother me with sharp pains on my an side.  Is that what's bothering you?  I'd put off a root canal as long as possible!  Especially if it's on the an side with numbness it could be your nerves zapping.

Hello Michelle,

I think my age is getting to me as well because I am getting new glasses too.  As far the root canal I have pain with heat and cool items around the tooth.  I don't have sharp pain but the hot and cool foods and drinks cause a lot of pain.  Hope this helps and thanks for the posting.

Greg Brown
Greg Brown
1.5 cm AN Removed 1/22/07
Suboccipital Procedure:OHSU ( Portland Oregon); Dr. McMinemee and Dr. Delishaw
Complete removeal of tumor but hearing nerve on left side was severed.

macintosh

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #18 on: March 08, 2007, 04:26:01 pm »
Dear Greg Brown--

I had hot-and-cold problems with my teeth a few years ago, and my dentist told me to start using Sensodyne. It worked. Next time I saw him, he said "I could have gotten you for a root canal." You might want to try it. This was all way before I had radiosurgery for an AN six weeks ago. The only side effect, strangely enough, is that my teeth on the opposite side feel a little funny--it's like they're always just coming out of novocain.

Mac

pearchica

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #19 on: March 08, 2007, 08:05:55 pm »
Oh GB I am sorry about the root canal- and yes I am a big believer in the axiom that things happen in threes.  For example when I was 29, my boyfriend broke up with me, I lost my job and I found out I had to have a root canal - all in the same week!  Hope your root canal goes well- heck you already are in recovery, might as well get er' done!  Take care, Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

Stevey

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #20 on: March 14, 2007, 12:24:10 am »
Greg,

JUst checking back in with you nad happy to say that my teeth are ok.  I did get oral thrush (yeast infection on my tongue and gums Ouch) and the meds gave me gastro problems don't ask.  I am walking 2.5 - 3 miles at a time to get in shape to go back to work soon, Also, my an side of my head feels a numbing throb some of the time now that I am without pain meds and and I get to start driving Thursday!  Keep Up the good Recovery!  Do you have any days when you just hit a wall physically.  I hate the fatigue sometimes.

Cheers,

Steve
2 cm Left Acoustic Neuroma Remved on 1/31/07
Via Retro Sigmoid resection at Hospital of U of Penn - complete removal by Drs. Judy and Bigelow.
Deaf in Left ear.  Looking at TransEar for dealing with SSD

Denise

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #21 on: March 14, 2007, 06:56:02 am »
Greg,

I am happy to hear you are doing well only three+ weeks out of surgery.  I am almost two years post surgery and I still have trouble multi tasking, but it is getting better.  Remember, this is a slow recovery process, push yourself when you can but remember to treat yourself well and get some rest too. 
4+ cm, left side
translab 5/9/2005
CSF leak repair 6/23/2005
platinum weight in left eye 11/9/05
12/7 nerve switch 8/3/06
Univ. of MN Drs. Levine/Haines

gb4821

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #22 on: March 14, 2007, 10:25:43 am »
thought I would give an update on how things are going now.  Thanks again for all the postings and the thoughts you gave given me.  I am so lucky to have found this site and you for help with questions and suport.  I hope that my posting will help others through their recovery process as well.

Stevey as far as hitting a brick wall I still find myself sometimes over doing what I should and I still pay for it but they are getting less and less.  My blood pressure has come down to a normel number most of the time and I am working on lowering my headache med's but I am still working that out.  I to am walking about 2 miles a day to get my stamima and weight under control.  I will see the audioalogist this Friday to discuess hearing options and she has heard about the tranear option and said it is cutting edge in technolagy so that make me happy that she has heard of it.  I Also hope to start DRIVING next Wednesday after my ENT appointment but I will have to get the dizzyness under control a little more to let that happen.  My shakes and dizzyness are getting better but still have dizzy spells when I walk and ride in the car.  It feels like I am half drunk compared to just a week ago where I felt completly drunk when I walked and when I was in the car riding.  I also still shake but I can control it most of the time until I get tired or if it is a room with loud noise or a group talking in it.  I see continued progress each week and look forward to the weeks coming in the future. 

Thanks again for all the help and support.

Greg Brown
Greg Brown
1.5 cm AN Removed 1/22/07
Suboccipital Procedure:OHSU ( Portland Oregon); Dr. McMinemee and Dr. Delishaw
Complete removeal of tumor but hearing nerve on left side was severed.

gb4821

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #23 on: March 14, 2007, 10:29:38 am »
I forgot to ask this question and thought I would put it out for you as well.

I am looking to travel on a Plane in the near future and was wondering if any of you had any advice about flying and if their is any problems with flying and AN's recovery or post-op?

Thanks,

Greg Brown
Greg Brown
1.5 cm AN Removed 1/22/07
Suboccipital Procedure:OHSU ( Portland Oregon); Dr. McMinemee and Dr. Delishaw
Complete removeal of tumor but hearing nerve on left side was severed.

Stevey

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #24 on: March 14, 2007, 12:38:01 pm »
Greg,

Alot of the patients that have been treated at west coast clinics like House have traveled right after surgery without much problem But talk t your doc for sure.  I don't have the dizziness or the shakes since first night in ICU, that and duble visin went away, but I tried to escape ICU because they wouldn't give me enough ice chips after 11 hours of surgery.  They kept putting on the tv and what ever I saw was burned into the back of my eyelids so I had really weird visions, maybe from hydrocephalus or the cerebellum injury from resection.  They gave me atavan and I felt great after that.  I only feel dizzy in the dark, watch out in the bathroom, trust me almost fell.  I hpe your residual symptoms cntinue t get better, I am seeing my ent tomorrow and he is going t talk to me about trans ear too.  I hate crowded places now and more than one talker, fuhgeddaboutit.
Take care buddy,

Steve
2 cm Left Acoustic Neuroma Remved on 1/31/07
Via Retro Sigmoid resection at Hospital of U of Penn - complete removal by Drs. Judy and Bigelow.
Deaf in Left ear.  Looking at TransEar for dealing with SSD

linnilue

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #25 on: March 14, 2007, 08:04:34 pm »
Boy, do I HATE a crowd, a grocery store, department store or any place with too mcuh stimulation.  My brain hates it and so so I.  I too could not tolerate a car but after awhile I could tolerate an suv.  the higher up the better.  As a matter of fact I had jsut gotten a brand new audi 4 months before my diagnosis and after that it sat in the driveway because I hated riding in it.  My husband too has one but I won't ride in it, too low, too much stimulation.  We sold my audi(with <2500 miles) 1 1/2 years post op and bought 2 suvs.  I still hardly ever drive, it exhausts me.  I still use a cane for balance when I'm out and about, but it doesn't bother me, whatever I have to do to feel real in this world I will do.  I do tend to avoid things which I know will be difficult for me like the movies or big parties.  I am about to start fundraising for Obama soon and will have to put on some major parties so we shall see how I hold up.  My last political event was a party I had for Elizabeth Edwards 10/04.  That day I had an ocular migraine which sent me to the ER and I got diagnosed with the acoustic within two weeks.  If you will recall, Mrs. Edwards got diagnosed within that same time period with breast cancer, how ironic.  I still tire easily, still get shakes, but my life gets better now every day but it has taken more than two years to get here.  don't despair, I wish I had known about this site way back when.  These people have a wealth of information to share with all.
Left AN dx. 11/05 Linac radiosurgery 01/06 Burlington, VT for a 9mm x 5mm tumor.  No necrosis yet (2 yrs. post-op).  Multiple post radiosurgery complications, some permanent.  Have radio-oncologist here.  Now see Dr. McKenna, Mass. Eye & Ear Instit., Boston for flollow-up care as my main An doctor.

lxg57

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #26 on: March 15, 2007, 08:26:05 am »
Hi, Everyone- Another Newbie here.  My surgery was 2/21.  Few facial issues (burnt tongue and ear on surgery side) but balance issues are really rocking my world- more so than going into surgery with intact hearing and coming out with none on the right side.

 I so much appreciate reading that so many other people have experienced all of what I am experiencing.   Learning limits is the hardest for me because I'm so used to just doing what I want when I want.   The feeling of "fishbowl head" is really throwing me!  It's not too bad at home or in a small crowd but really frightening when sensory overload hit (Yesterday's lesson was that going to Super Wal Mart is not a good idea-even on a day where I'm feeling pretty functional!).  Hardest of all is realizing that my body is calling the shots and probably will be for quite a while!  Those bursts of energey are followed up by a nap at least and a full day of feeling wiped out at worst. 

I know that I'll never go back to the "normal" I was before surgery but can anyone(s) give me a guesstimate of when they started to feel a new sense of normal for at least to regain enough energy to get back to real life?  Thanks again to everyone---your support makes a strange situation much easier to deal with!  ;D
Linda

2.3 cm right sided AN,  removed by retro sigmoid apporach by Kevin Walter and John Wayman at URMC(Strong Hospital) on 2/21/07.  8th cranial nerve lost, Right single sided deafness.

Obita

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #27 on: March 15, 2007, 08:36:05 am »
Hi lxg57:

Welcome!!

I felt good at 2 months post op.  I felt real good at 3 and somewhere between 6 and 12 months, I was the same as before surgery.  It took time, but all is very well now at almost 3 years.

Good luck to you.  Patience pays off,  Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

gb4821

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #28 on: March 15, 2007, 10:48:56 am »
Hi, Everyone- Another Newbie here.  My surgery was 2/21.  Few facial issues (burnt tongue and ear on surgery side) but balance issues are really rocking my world- more so than going into surgery with intact hearing and coming out with none on the right side.

 I so much appreciate reading that so many other people have experienced all of what I am experiencing.   Learning limits is the hardest for me because I'm so used to just doing what I want when I want.   The feeling of "fishbowl head" is really throwing me!  It's not too bad at home or in a small crowd but really frightening when sensory overload hit (Yesterday's lesson was that going to Super Wal Mart is not a good idea-even on a day where I'm feeling pretty functional!).  Hardest of all is realizing that my body is calling the shots and probably will be for quite a while!  Those bursts of energey are followed up by a nap at least and a full day of feeling wiped out at worst. 

I noticed a major changes about the 6th week with having more stanima and some of the syomptoms getting better.  I think that I feel these better changes each day and can concentrate on the larger ones like my hearing, tiriedness, dizzyness and larger crowds now.    I hope and work at adding to these changes each day.  The thing to remember is to listen to your body to let you know when to rest.  It really does helps.  I will try to remember this when I go back to work as well but thank god I have a loving wife that will not hesitate to tell me to take it easy. 

Thanks for the posts and talk to you soon,  I will post again after I talk to the audioalogist on Friday about what may work for my hearing...

Greg Brown

I know that I'll never go back to the "normal" I was before surgery but can anyone(s) give me a guesstimate of when they started to feel a new sense of normal for at least to regain enough energy to get back to real life?  Thanks again to everyone---your support makes a strange situation much easier to deal with!  ;D
Greg Brown
1.5 cm AN Removed 1/22/07
Suboccipital Procedure:OHSU ( Portland Oregon); Dr. McMinemee and Dr. Delishaw
Complete removeal of tumor but hearing nerve on left side was severed.

FlyersFan68

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #29 on: March 15, 2007, 12:22:10 pm »
lxg57,

I've experienced everything you are experienceing. In due time it all resolves. This article helps explain.

http://www2.kumc.edu/otolaryngology/otology/VRforMDs.htm

For just 5 or 10 minutes each day for a few weeks you can sit yourself in a chair facing a clock then slowly move your head side to side while focusing your eyes only on the clock. Do this from time to time. This helped most. Three years later I run, skate and play sports in the street with my son and all his friends. Your other side will compensate soon. Some people have no vesibular in either ear and function relatively well relying on other balancing mechanisms such as vision and muscle reflexes.