Author Topic: Very New and very scared  (Read 17983 times)

Shrnwldr

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Re: Very New and very scared
« Reply #15 on: February 01, 2007, 09:53:04 am »
Yes Sonya since finding this site I have been blessed and far more positive.

Battyprincess --  My Otologist(spelling?) is NOT associated with the House, but my team of doctors, i.e., Dr. Hitselberger and Dr. Stefan are.  Dr. Robinson has done this type of surgery with Dr. Hitselerger for about 20 years or more.   My niece works for Chapman Hospital in the Operating Room and knows Dr. Friedman.  Dr. Friedman has not only given me a second opinion, but has put in a good word with Dr. Hitselberger regarding me.  I have every confidence with my team of doctors that all will be well and in my best interest.

I was wondering since the MRI I have been having these weird sensations on my upper left eye across the bridge of my nose area.  It is like being numb is the best I can describe it?  Do you all think I should bring this to the attention of my doctor?  I know that oftentimes the right side of the brain affects the left side and vice versa.   
FYI my insurance approved my visit to Dr. Hitselber -- so March 19th I see him

Thank you again one and all for all the words of encouragement and kindness  ~ Shaorn
2cm x1cm, right side
Surgery: Trans-lab approach
Dr. Jerald V. Robinson, Dr. William Hitselberger, Dr. Michael Stefan.
Hopsital: St Vincent's Hospital, Los Angeles, CA
Date of Surgery: May 18, 2007

cindysip

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Re: Very New and very scared
« Reply #16 on: February 01, 2007, 10:09:04 am »
From all that I have read you are in the very best of hands. Your determination to move on with your life will definitely make for a smoother recovery.

Being new here I know how wonderful it is to read all of the posts here...you couldn't ask for better support.
Diagnosed 1/07 2mm AN - symptoms included spinning sensations when awakening, balance problems & mild hearing loss
6/07 - followup MRI no growth
6/08 - no growth, hearing unchanged

Shrnwldr

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Re: Very New and very scared
« Reply #17 on: February 02, 2007, 02:48:43 pm »
Yipppeeee  My insuance gave its blessings to my seeing Dr. Hitselberger.  So March 19th I will bring my body and my films to Hitselber's office and meet the man.  I am looking forward to this meeting.  I have heard so many favorable things about him.

I am grateful for everyday since finding this site.. it is a true blessing. ~ Sharon
2cm x1cm, right side
Surgery: Trans-lab approach
Dr. Jerald V. Robinson, Dr. William Hitselberger, Dr. Michael Stefan.
Hopsital: St Vincent's Hospital, Los Angeles, CA
Date of Surgery: May 18, 2007

Jim Scott

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Re: Very New and very scared
« Reply #18 on: February 02, 2007, 03:39:13 pm »
Shrnwldr:

Hi!  Sorry you have an AN - but glad you found us

You seem to be in good medical hands and its obvious that you are educating yourself, which I commend.

Acoustic Neuroma tumors are somewhat complicated but the two main things to remember are that they are both benign (non-cancerous) and operable

My signature tells my story, as it were,  Almost 8 months post-surgery and I'm fine.  My balance isn't quite 100% but it's more than serviceable.  I no longer sway, 'lurch' or ever come close to falling when I walk.  I no longer need to clutch the handrail when I walk up or down stairs.  I never experienced any facial paralysis, pre or post-op.  I do have an occasional 'dry eye' condition (on the 'AN side') but it's relatively minor and does not even require drops most of the time.  A slight 'numb' sensation in a few spots, including the side of my tongue - and that's about all.  Oh, I'm deaf on my left side. I have been for about 5 years, so this is no longer a problem for me.   Otherwise, I'm good.  :) I expect to be even better in another year.

I was driving two weeks after my surgery.  I only had to give up my normal routine for about 2 weeks.  Of course, no one is going have exactly the same experience, as you know.  Some AN surgery patients do better and some do not.  There are a myriad of factors involved of course, but its axiomatic that the skill of the surgical team is paramount to having a good outcome, minus any severe complications. 

My point is to reassure you that while a diagnosis of a brain tumor is scary, you are very, very likely to not only survive this medical challenge but do so with aplomb.

I wish you well.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

ppearl214

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Re: Very New and very scared
« Reply #19 on: February 02, 2007, 03:58:58 pm »
Hi Jim,

Not just operable, as you know.  Many that are small and don't require micro-surgery may have other options as well, including radio-surgery.  Can't forget us! :)

Phyl

Shrnwldr:

Hi!  Sorry you have an AN - but glad you found us

You seem to be in good medical hands and its obvious that you are educating yourself, which I commend.

Acoustic Neuroma tumors are somewhat complicated but the two main things to remember are that they are both benign (non-cancerous) and operable

My signature tells my story, as it were,  Almost 8 months post-surgery and I'm fine.  My balance isn't quite 100% but it's more than serviceable.  I no longer sway, 'lurch' or ever come close to falling when I walk.  I no longer need to clutch the handrail when I walk up or down stairs.  I never experienced any facial paralysis, pre or post-op.  I do have an occasional 'dry eye' condition (on the 'AN side') but it's relatively minor and does not even require drops most of the time.  A slight 'numb' sensation in a few spots, including the side of my tongue - and that's about all.  Oh, I'm deaf on my left side. I have been for about 5 years, so this is no longer a problem for me.   Otherwise, I'm good.  :) I expect to be even better in another year.

I was driving two weeks after my surgery.  I only had to give up my normal routine for about 2 weeks.  Of course, no one is going have exactly the same experience, as you know.  Some AN surgery patients do better and some do not.  There are a myriad of factors involved of course, but its axiomatic that the skill of the surgical team is paramount to having a good outcome, minus any severe complications. 

My point is to reassure you that while a diagnosis of a brain tumor is scary, you are very, very likely to not only survive this medical challenge but do so with aplomb.

I wish you well.

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

Desilu

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Re: Very New and very scared
« Reply #20 on: February 04, 2007, 05:26:23 pm »
Hi Sharon,

I can not say enough good things about Dr. Hitselberger. He is totally awesome! He is one of the nicest doctors I have ever met. He has been doing these surgeries for years and as everyone knows, numbers do count when it comes to AN surgeries.

When I had my consultation with him, I asked him how many people have died from AN surgery that he has performed, he said not a one and he didn't want me to ruin his record! I had a good laugh!

I am 1 1/2 years post surgery and am doing great. I have sent Dr. Hitselberger notes and letters of my progress and he has always responded back. He is very considerate. If I had to do it all over again, he would be the man. I wish you the best. If you have any questions, please send me a personal email.    Ann
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger

alknows

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Re: Very New and very scared
« Reply #21 on: February 05, 2007, 11:48:34 am »
Was just curious if anyone here has had their AN treated through Kaiser here in SoCal. Getting from diagnosis to the neurosurgeon only took two weeks so I'm thankful for that. I'll be treated in San Diego, at the Kaiser facility there. My neurotologist is a Dr. Cueva and the neurosurgeon is a Dr. Mastrodimos.

Shrnwldr

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Re: Very New and very scared
« Reply #22 on: February 07, 2007, 09:45:23 am »
I have another question.  My tumor is on the right side and yet my balance problems seem to affect my left side.  When I fall I fall on my left side.  Is this right side affecting left side?   Even when I walk I have a tendency to verve to my left.... does that make sense?
Sharon
2cm x1cm, right side
Surgery: Trans-lab approach
Dr. Jerald V. Robinson, Dr. William Hitselberger, Dr. Michael Stefan.
Hopsital: St Vincent's Hospital, Los Angeles, CA
Date of Surgery: May 18, 2007

Jeff

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Re: Very New and very scared
« Reply #23 on: February 07, 2007, 12:15:55 pm »
Was just curious if anyone here has had their AN treated through Kaiser here in SoCal. Getting from diagnosis to the neurosurgeon only took two weeks so I'm thankful for that. I'll be treated in San Diego, at the Kaiser facility there. My neurotologist is a Dr. Cueva and the neurosurgeon is a Dr. Mastrodimos.
Hi,
My brother had AN surgery performed by doctors Cueva and Mastrodimas in San Diego. He really liked them and overall, had a good experience. Let me know if I can answer any other questions.
Jeff
NF2
multiple AN surgeries
last surgery June 08

alknows

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Re: Very New and very scared
« Reply #24 on: February 07, 2007, 02:00:49 pm »
Actually, I'm off the hook. The tumor, which walked like a (AN) duck, and quacked like a (AN) duck, turned out to be a goose! Actually a meningioma (sp?) that affects feeling, not movement in the face. Surgery would leave me feeling exactly like I feel now, but without a tumor. The course of action is annual MRIs and I have to look for symptoms developing, but no surgery. I'm grateful for that. Good luck to everyone in their battles with AN!

ppearl214

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Re: Very New and very scared
« Reply #25 on: February 07, 2007, 02:03:45 pm »
Actually, I'm off the hook. The tumor, which walked like a (AN) duck, and quacked like a (AN) duck, turned out to be a goose! Actually a meningioma (sp?) that affects feeling, not movement in the face. Surgery would leave me feeling exactly like I feel now, but without a tumor. The course of action is annual MRIs and I have to look for symptoms developing, but no surgery. I'm grateful for that. Good luck to everyone in their battles with AN!

Glad to hear you found your answer, alknows.  Even though meningiomas are nothing to sneeze at, my hope is that your docs and the MRI's will be kind to you.

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

Winkie

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Re: Very New and very scared
« Reply #26 on: February 20, 2007, 07:47:52 pm »
When I was diagnosed 3 years ago, I also immediately went to the Internet and scared myself and my husband to death!  I wish I had waited until I had had my first apt with my AN doctor.  Without a 'guide' surfing was frightening.  I wish I had found this website sooner to be able to vet information.  I encouraged my doctor to caution newly diagnosed patients to be careful about too zealous information gathering on the web.  I too had numerous visits on various options and can't stress enough the importance of asking many many questions.  We had my step-daughter come to all of our apts to take notes.  It was invaluable to us as we could just listen and not worry about capturing information.  It also really brought us all closer together as a family.  Good luck and please don't be afraid to ask questions over again to make sure you understand.  Hang in there!   ;)

Omaschwannoma

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Re: Very New and very scared
« Reply #27 on: February 21, 2007, 06:42:14 am »
I have another question.  My tumor is on the right side and yet my balance problems seem to affect my left side.  When I fall I fall on my left side.  Is this right side affecting left side?   Even when I walk I have a tendency to verve to my left.... does that make sense?
Sharon
If I remember correctly, the right side of the brain controls the left side of the body as the left side of the brain controls the right side of the body.  As for your ? re: neck soreness.  You can help your neck ahead of time by routinely stretching the neck muscles before your proceedure.  This will make the muscles supple increasing your chances of little or no neck pain. 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear