Author Topic: I am new to this and had the operation Jan 21 of 2007.  (Read 14442 times)

gb4821

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I am new to this and had the operation Jan 21 of 2007.
« on: February 13, 2007, 03:02:34 pm »
My Name is Greg and had my Sergury in Portland Oregon at OHSU 3 weeks ago. 

I lost my hearing in my left ear completly but I don't have any Facial problems  :)

I was wonder if any of you had any of these things happen to you, when they went away for you, and what help you over come it?

Metalic taste in your mouth that took the flavor of food away?

Tooth ache that started this last week?

The shakes from overload in a busy area and only having the one right ear now?

Multi tasking is still a problem.  Seams that it is hard to do more then one thing in my brain at a time?

Thanks for your time and the postings I have already read and the ones that will be generated in the future.

   

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.

1wareagle

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #1 on: February 13, 2007, 03:44:47 pm »
Greg it's only been 3 weeks since your surgery. I've had all those symptoms and more. Give it time and it will slowly go away. If your not having facial and balance problems you are doing great. Hang in there, it gets better. Ellis
Ellis- Age 50- Mississippi
3.2 cm AN Translab w/ BAHA Surgery
@ House Ear Clinic - LA - 01/04/07    Dr. Brackmann, Dr. Hilselberger, Dr. Stefan
Platinum weight in right eye-Dr. Roberts
Right side facial paralysis (slowly getting movements)

Boppie

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #2 on: February 13, 2007, 04:39:29 pm »
Greg, yes, most of the patients who have had surgery will wait a few months before life seems normal for food taste, multitasking, and facial pains.  Keep working with your normal routines and get extra rest.  It is estimated that the time for full recovery lasts about one month per hour of surgery.   You are still dealing with the anesthetic effect on your body.  The nerves that were traumatised are still healing too.  Keep checking back with us and share your progress stories..   

pearchica

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #3 on: February 13, 2007, 06:11:51 pm »
Hey Greg: I haven't had any taste issues as I had radiation (cyberknife)- I do know that the steroids post ck made me thirsty- especially if I had anything with caffiene in it.  I'm assuming you are also on steroids and this combined with the anethesia would be doing a number on the taste buds.  Oh and I have a throbbing along my jawline but post CK it is diminishing a lot- in fact only flared up once today and I just massaged it for a minute and it went away.  I'm beginning to think it may have been triggered by the Cheetos I consumed! (High salt, high fat- my favorite food group).

Take care of yourself- good luck with recovery post surgery- 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

Lorenzo

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #4 on: February 14, 2007, 02:24:23 am »
I had all of those except the tooth ache. Overload in busy areas is still with me, 2 years post CK. Taste has gone back to normal. Multi-tasking si still a problem but I'm working on that!
Good luck with your recovery!
Ciao, Lorenzo

Battyp

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #5 on: February 14, 2007, 07:46:41 am »
Hi Greg and welcome.  What you are describing sounds pretty normal.  It all takes time to heal....lots of time! 
use a sensitive specific toothpaste like synsodyne which should help with the teeth issue.  I put an ear plug in my good ear to buffer the twitching from over stimulation from the good ear.  Or I'll send my mom who stuffed napkins in my ears in a casino to  help you out if you wish  ;D  The multitasking gets better with time and practice.  In the mean time keep  post its around they are a lifesaver sometimes!  I found in the beginning I needed to put things back in the same place and write things down to remember. 

Hope things get better for you quickly!  Keep us updated on how you are doing!  Remeber to get plenty of rest when you need it!


gb4821

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #6 on: February 14, 2007, 11:39:42 am »
Thanks for the many postings.  It helps knowing that these symptoms will get better in the future and I will take your advise about getting more rest.  I guess I was a little scared about these symptoms beacuse I didn't expect them.

Thanks again for the support and I will keep you posted.


Greg Brown form Oregon
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.

Pembo

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #7 on: February 20, 2007, 07:24:21 am »
Greg, I didn't expect any of the side effects I got and it was scary! But things do improve with time. You will find your "new" normal. I'm definitely not the same person I was before all of this!

Best of luck in your recovery and stay strong.
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

gb4821

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #8 on: February 21, 2007, 12:35:44 pm »
Thought I would give an Update today on how I am doing.

I have taken the advice and rested a lot more this last week.  I t has helped a lot.  My shakes are still thier but I was able to control them better when I was out at my sons Blue and Gold (Cub Scout) pack meeting last night.  I now know what the Fishbowl head feels like but with time I hope it goes away or is more managable.  I have an appointment with my Dentist and my eye doctor this next week to so if the teeth ache is caused by the surgery or just natural causes and the blurry vision is the same.  I Live on a hill side so I took a walk down the hill to my mail box yesterday for the mind and body exercise.  I really felt the Fishbowl feeling for the next 3 hours but I am told that this kind of exercise will help in the long run.  Just don't over do it my Doctors said.  I woke up to 5 inches of snow today so my outside walking might have to be but on the back burner.  Some good news is that my son is enjoying sleding down our hill and making snowmen.

Hope all is well with you and thank you for taking the time in reading this thread it has help a lot,

Greg Brown
Klamath Falls Oregon

PS - thank you bettyprincess for e-mailing me and checking up on me.
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.

Sue

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #9 on: February 21, 2007, 01:04:23 pm »
Hi Greg,

Down in Klamath Falls, huh?  I went to Roseburg HS and to Ashland for college.  Now I'm in Vancouver, WA. I had Gamma Knife and my trigeminal nerve is draped over the AN so I have facial numbness and the inside of my mouth (on the AN side) is affected also.  Some days I can taste metallic or salty stronger than other days.  I hope that your symptoms subside and that you will be feeling much better - which you will but it does take time.

Good luck to you,

Sue in Vancouver USA
Sue in Vancouver, USA
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Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
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Boppie

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #10 on: February 21, 2007, 04:04:32 pm »
Greg, It is good to hear sounds of progress for you.  I fretted and waited for changes and kept on trying to get to normal.  At one year I'd reached what I thought was 99% and now three months later I am even better than that.  I have as much energy as I had pre op and before I received the surprise diagnosis.  It takes positive thinking and time.  I've heard that 2 years is even better!
« Last Edit: February 21, 2007, 09:38:27 pm by Boppie »

Obita

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #11 on: February 21, 2007, 07:41:38 pm »
Hi Greg:

Other than the tooth ache, all of the things going on with you are exactly the way I felt.  I am comming on 3 years since surgery and I can't complain about a thing except the multi tasking.  I just plain don't like to have to do it.  I used to thrive on pressure and doing a million things at once.  Now, doing a few things at once is my limit and I'll take it.  The first year post op, I couldn't even do that without getting so overwhelmed I wanted to scream.

I take it back, there is the overload thing in a loud room.......I doubt that will ever change.  It makes me nuts.  I am hoping that getting a hearing device in the near future will help with that.

It does sound like you are right on track Greg.  Hang in there.  Kathy

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

Stevey

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #12 on: February 22, 2007, 11:13:24 pm »
Hey Greg,

I am right behind you surgically by 10 days and so far I am with you on the taste thing  all water tastes stale/stagnant but if yu add ice it goes away for me.  My surgery relieved my facial numbness and twitching and the searing pain of the tumor pressing on my Brain Stem.  Right now the hearing and dealing with limitations are the toughest part.  I am dying to pick up my 1 year old daughter, Julia but she weighs more than 5 lbs (thankkfully.....).  From so much that I have read from others, I feel so blessed to be only deaf in my left ear.  Looking forward to checking out the transear posts here.

Cheers to you and continued good recovery!

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

gb4821

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Re: I am new to this and had the operation Jan 21 of 2007.
« Reply #13 on: February 23, 2007, 12:20:51 pm »
Hey Greg,

I am right behind you surgically by 10 days and so far I am with you on the taste thing  all water tastes stale/stagnant but if yu add ice it goes away for me.  My surgery relieved my facial numbness and twitching and the searing pain of the tumor pressing on my Brain Stem.  Right now the hearing and dealing with limitations are the toughest part.  I am dying to pick up my 1 year old daughter, Julia but she weighs more than 5 lbs (thankkfully.....).  From so much that I have read from others, I feel so blessed to be only deaf in my left ear.  Looking forward to checking out the transear posts here.

Cheers to you and continued good recovery!

Steve

Hi Steve,

Thanks for the posting and hope your taste buds come back too.  Mine are tring to trick me and some times they act like they are working ok and other days they go back to the untasting side (if that is a word).  I think the best advice the forum gave me was to rest and sleep a lot on week three.  It seamed to help me so far.  This week I have tried to stay up a little more and some days it work but orther days I have paid for it.  I also feel lucky to not have facial problems as well.  Let me know what you think of the Tranear aids if you can?  I have an appointment with my doctor March 6th to discuss my options for the hearing and do a little post - op inspection.  This is week 4 and I am feeling a little more normal but still can't do the normal things yet.  I still get uneasy on unlevel ground and level for that matter and walking gives me the fishbowl head they talk about.  and of course the headches but med's keep those down to a doable state.

Hope you recovery goes well and fast, :)
Greg Brown
Klamath Falls, OR
1.5cm tumor
surgery at OHSU
Jan.22, 2007
Lost hearing in left side and balance problems but no facial problems.
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 #14 on: February 23, 2007, 10:20:40 pm »
Greg,

Thanks for the tips, I hit a wall today energywise for the first time and just laid down n the couch and slipped int a gd nap (My O key is sticking).  It only affects my taste of water.  I called transear today to get some info and they will send a fitting kit to my ent to look into this option, I hear (read) good things about it as my SSD also on left like yours is tough to get used to and in my businesss I don't know how I can do without the hearing though I have been functinally deaf fr mnths.  Met a guy in my neurosurgeons ffice and saw that he had an MRI that said Gadlinium contrast  on the side of the folder and he had a scared look on his face, I went over to him and just said t him that the doctors here were tp notch and he said he had a 3 cm acoustic neuroma and I told him turning my head t show my scar that I had a half cm smaller one three weeks ago.  I talked t him for about 10 minutes and then gave him my business card and told him to call me, I think that he was relieved to see a living breathing survivor.  I know that when ANA gave me a list I called smeone on it and felt much better so I just wanted to keep up the goodwill, plus I was him such a short time ago, physically and emotionally.
Cheers and thanks ofr the post,
Srry abut the o's
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