Author Topic: 2.5cm AN removed May 10th, 2005 - Here is my story  (Read 6554 times)

stein78

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2.5cm AN removed May 10th, 2005 - Here is my story
« on: June 15, 2005, 03:09:27 pm »
I hope I gave enough detail, if you have any specific questions, i would be more than happy to answer them.  Thanks for reading.
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January of '04 I start to notice some pressure in my left ear.  It felt like it had to pop but it never would, I thought maybe it was the start of a head cold or something.  So I ignore it for about a month and then I finally go see my general doctor in Feb '04.  He puts me on all sorts of meds and said if I didn't feel better, I should contact an ENT, he gave me a referral.  I think the meds helped, but I wasn't sure.  Some days I felt normal, other days I would still notice the pressure.  At this point I got so used to it, it just felt normal.  I ignored my symptoms for a full year before I did anything about it.  Finally in January of '05 my left ear starts ringing like crazy and I am noticing some hearing loss in the ear while sleeping at night.  When my right ear (good ear) was in the pillow, I couldn't hear certain things as well.  Not a huge difference from the other ear, but just enough to notice.  I figure it's about time to go see the ENT referral I was given a year ago and pursue this further.

Late January '05, I see the ENT and I tell him my story.  The first thing they do is give me a hearing test.  Sure enough I have minor high frequency hearing loss.  They also tested my eustachian tubes and found out that they didn’t equalize the pressure in my ears very well.  Oh, makes sense I think to myself, that’s why I have the pressure in my ear.  The doctor figured the same, but at the end of the appointment he mentioned something called an Acoustic Neuroma.  He figured I didn’t have it since it is so rare, but since the hearing loss was only on one side he thought it might be a good idea to get a brain MRI to make sure.  I like health stuff, I thought seeing pictures of my brain would be cool, so I scheduled the MRI for the next week and have it done.

February 8th, 2005 and 3:15pm the doctor himself calls me up and work.  I figured a nurse would have called me to tell me that my MRI was all clear, but when I heard the doctor’s voice on the phone, I started to panic.  I will never forget his first sentence: “Jason I have your MRI results and unfortunately you do have that tumor we talked about.�  My heart sank into the pit of my stomach, I never felt fear like this before.  He gets me a contact at Loyola University Medical Center, Dr. John Leonetti.  He says he does one or more of these surgeries a week.  I get an appointment to see him in a week and now I have to wait….

That week was the worst week of my life; I was so scared I didn’t know what to do.  I googled Acoustic Neuroma like crazy and read too many horror stories.  I was in a total panic, nothing could keep my mind off of it, and I was a total zombie at work.  It was the longest week I have ever had.

February 15th, 2005 I see the doctor at Loyola.  He reviews my MRI and says my tumor looks very routine and since my hearing was phenomenal for the tumor size (2.5cm), he goes on to explain the retrosigmoid approach to me.  I am totally on board, sure it’s a small chance to save the hearing, but it was worth a shot.  He tells me that he and the neurosurgeon that he works with have done almost 1000 AN cases together.  I was feeling better, but I didn’t realize how intense the surgery was.  Surgery was scheduled for May 10th.

My father works at Sonic Innovations (they make digital hearing aids), he was talking to some of his co-workers about my AN situation.  One of them mentions that they used to work at the House Ear Clinic and suggests that I get in contact with Dr. Derald Brackman for a second opinion.  It sounds like a great idea to me, I got plenty of time, why not.  I send my MRI CD to Dr. Brackman and he calls me at home on a Sunday.  Long story short, he explains that he would use the Translab approach because with the size of the tumor my hearing is going to be gone anyway and that the additional risks of the restorsigmoid approach weren’t worth it.  (headaches and facial nerve preservation)  WHAT????  Two top doctors don’t agree on the procedure to use for my brain surgery?  This muddied the water big time, now I needed a third opinion.

From another co-worker of my father’s, I get a contact at the Mayo Clinic.  I send my MRI CD to Dr. Colin Driscoll and I speak with him.  He said that he would use the retrosigmoid approach as well.  He basically tells me the exactly same things that my local Chicago doctor (Dr. Leonetti) told me.  At this point I feel better, 2-1 for retrosigmoid, works for me.  Plus, Loyola was only 25 minutes from my house.

It was a long wait for May 10th to roll around, but it finally did.  I was ready, SO ready.  I was tired of thinking about this tumor in my head.  6:30am they wheel me in and start getting me ready for surgery.  Dr. Leonetti comes by to shave my head and ask me how I am doing.  I said I felt good and I was ready to rock and roll.  He continued to shave my head and was glad to hear I was in such good spirits.  He shook my hand and things were about ready to go.  Next thing I know, I am getting some drugs to help me relax and before I know it, I was out like a light.

I woke up feeling tired, but surprisingly with it.  They finally wheeled me into the ICU.  My wife comes in, I ask what time it was, it was 4pm.  Wow, that’s a long time to be waiting, I felt bad for my wife and family.  She tells me that they got the whole tumor out and preserved my facial nerve.  Unfortunately, my hearing was gone in the ear.  They got me up walking around, it was very difficult at first, but got better everyday.  I went home on Friday, May 13th.

It was great to be home, I slept for almost two days straight at first.  I needed help going up and down stairs and I was walking very slowly on my own.  My wife had to help me shower for the first week too.  I was amazed how quickly I improved.  Everyday things got easier.  I did have dome delayed facial weakness that started about a week after surgery.  I had trouble blinking my left eye, my left eyebrow didn’t really move, and my left lower lip didn’t move much either.  All of this went away during my third week at home.  By the time my 4 week follow-up appointment was here, I was ready to join the world.  I was walking great on my own and I pretty much could do everything on my own too.  The body is an amazing thing.  I was also tired of watching movies and playing on my Sony Playstation.

I met with Dr. Leonetti for my 4 week follow-up on Wednesday, June 8th.  He thought I looked amazing.  I had no more restrictions and he felt I was ready for join society once again.  That weekend I went to a friend’s lake house and went boating.  It felt great to be out and about and driving again.  Now it has been 5 weeks since surgery and I am doing great.  Still getting used to being deaf in my left ear, but I am sure that will get easier with time.  I am now back at work and getting back into my regular routine.  I just get tired pretty easy, but I am sure sitting on my butt for 4 weeks didn’t help either.  I will get my next MRI in May of next year and see the doctor shortly there after.

I did it.  It’s over, I can get on with my life.  I feel fortunate that I did so great, being 27 you never think you would have brain surgery.  But I did, and I made it through with flying colors.


Jason
« Last Edit: June 15, 2005, 03:12:44 pm by stein78 »
29 years old
2.5cm AN - left side
Removed May 10th, 2005
Dr. John Leonetti & Dr. Douglas Anderson
Loyola University Medical Center
Chicago, IL

Dave_S121

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Re: 2.5cm AN removed May 10th, 2005 - Here is my story
« Reply #1 on: June 15, 2005, 04:23:07 pm »
Jason, Glad to hear your story and that your from Chicago.  I had my AN removed on October 20th, 2004 at Hinsdale Hospital.  There is a very good support group that meets in the Naperville area.  The next meeting is scheduled for sometime in September.  I hope you consider coming. 

Dave Skaja
68 years old
2.2cm AN Right side
Removed 10/20/2004 Translab
Dr. Wiet and Dr. Kazan
Hinsdale Hospital, Hinsdale, IL.

stein78

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Re: 2.5cm AN removed May 10th, 2005 - Here is my story
« Reply #2 on: June 15, 2005, 05:01:50 pm »
Thanks Dave.  I woud love to join the support group and go to the meeting.  I actually live in Naperville so I am nice and close.  Any information you can pass on to me is greatly appreciated.  Thanks.
29 years old
2.5cm AN - left side
Removed May 10th, 2005
Dr. John Leonetti & Dr. Douglas Anderson
Loyola University Medical Center
Chicago, IL

stein78

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Re: 2.5cm AN removed May 10th, 2005 - Here is my story
« Reply #3 on: June 29, 2005, 11:46:09 am »
 :D
29 years old
2.5cm AN - left side
Removed May 10th, 2005
Dr. John Leonetti & Dr. Douglas Anderson
Loyola University Medical Center
Chicago, IL

Monica

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Re: 2.5cm AN removed May 10th, 2005 - Here is my story
« Reply #4 on: July 27, 2005, 08:23:32 am »
Jason,
Great to read your story. Very similar to mine. Have you had any balance issues. My tumor was on the balance nerve, which had to be cut. Lost the hearing in my right ear and wear a CROSSTALK aid to help with that. With your Dad being in the business I am sure you will have not trouble getting some kind of aid should you choose to go that way.

Cheers,
Monica

stein78

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Re: 2.5cm AN removed May 10th, 2005 - Here is my story
« Reply #5 on: July 27, 2005, 08:50:49 am »
Hi Monica,
My balance is basically back to where it was before surgery.  No real problems there, I just need to take a bit more caution on the dark.  I am still getting used to the hearing loss, but it gets easier every day.

Take care!
Jason
29 years old
2.5cm AN - left side
Removed May 10th, 2005
Dr. John Leonetti & Dr. Douglas Anderson
Loyola University Medical Center
Chicago, IL

stein78

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Re: 2.5cm AN removed May 10th, 2005 - Here is my story
« Reply #6 on: July 27, 2005, 08:52:33 am »
Fogot to put in a link to some pictures:

http://anausa.org/forum/index.php?topic=211.0
29 years old
2.5cm AN - left side
Removed May 10th, 2005
Dr. John Leonetti & Dr. Douglas Anderson
Loyola University Medical Center
Chicago, IL

alibauer

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Re: 2.5cm AN removed May 10th, 2005 - Here is my story
« Reply #7 on: August 01, 2005, 08:25:31 pm »
Hi Jason,

Just wanted to say that your story is really inspiring, and I think you are really tough and brave! I'm about your age (26) and I have a 1.3cm schwannoma on my cranial nerve. I'm not really positive that it's an AN (unclear about the position and the doctor that diagnosed it wasn't all that helpful. I do know that it is right off of the left side of my cervical 4 vertebrae. Only diagnosed a week ago and still learning about the jerky tumor. Hopefully the neurosurgeons I'll see to get surgical options will make the risks, options, etc. a little clearer. I would not even consider leaving it in. Like you were, I am already ready to stop thinking about the tumor in my neck.

I wish I knew if this thing was an official AN so I could get used to the idea of getting my skull drilled and filled and my head partly shaven. I know that is really vulgar, but I have a hard time sugar coating this considering it's so new and my brain is always racing with thoughts of it.

I didn't even know until I read your story that I'd be out of work about a month or maybe more! Yikes. Anyhow, now I'm rambling so I'll end this by saying thanks for sharing. It's from people like you that I've learned the most about this thing.

Ali

stein78

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Re: 2.5cm AN removed May 10th, 2005 - Here is my story
« Reply #8 on: August 02, 2005, 09:48:24 am »
Thanks Ali!  Best of luck to you, let us know what you find out.
29 years old
2.5cm AN - left side
Removed May 10th, 2005
Dr. John Leonetti & Dr. Douglas Anderson
Loyola University Medical Center
Chicago, IL

Jeanlea

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Re: 2.5cm AN removed May 10th, 2005 - Here is my story
« Reply #9 on: August 03, 2005, 02:20:25 pm »
Thanks for sharing your story.  I just got the call from my doctor today.  He told me that I had a 3.5 tumor and that it was aucoustic neuroma.  And I thougt it was a frivilous MRI that he had me get!  Up until a few hours ago I'd never even heard of AN so I'm trying to learn as much as possible.  I'm still waiting to hear from my doctor because he's scheduling an appointment for me with another doctor in Milwaukee.  That alone made me think it's serious because I live in the Upper Penninsula of Michigan and it's a 4 hour drive from here.  Glad to hear that things can go well. 
translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

Gabi

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Re: 2.5cm AN removed May 10th, 2005 - Here is my story
« Reply #10 on: August 03, 2005, 08:41:49 pm »
I certainly find it very helpful reading about everyone's experiences and -- Jason, your pics help me further understand the magnitude of the surgery.  It's wonderful that you have done so well . . . helps those of us who are still evaluating our treatment choices.  I'm leaning toward Gamma Knife, but will make a final decision by the end of August.

 ;D
Gabi
1.8 cm
R Ear
*Possible NF2 (bilateral ANs) per MRI report..waiting to meet with specialist(s)

Assessing treatment options

BC Survivor :o)

bonehead

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Re: 2.5cm AN removed May 10th, 2005 - Here is my story
« Reply #11 on: August 03, 2005, 09:02:20 pm »
To highlight what I have mentioned in another thread that each case is different, I'd like to mention that my 2.0cm retrosigmoid scar was about half as long as this one.  A year an a half post surgery and you can barely see it.  I'm sure his will be the same given a little time.  If you are going to brag at the local bar - do it soon!

:)

Jon

PS - I am very happy your recovery is going well.
2.0 cm removed via retrosigmoid 4/7/2004
Dr. Sisti and Dr. Wazen
Columbia Presbyterian, NYC

stein78

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Re: 2.5cm AN removed May 10th, 2005 - Here is my story
« Reply #12 on: August 04, 2005, 09:46:34 am »
Thanks everyone.  I am glad my story is providing some insight. 

I'm not sure why my scar is so big compared to yours Jon, but it makes for a killer story!

Just an update, I am still doing great.  I feel practically normal except for the hearing loss and some white noise in my left ear.  However, I am trying to be conservative and not do anything crazy this summer.  Don't want to jar my head around too much just yet.

Best of luck to all of you!
29 years old
2.5cm AN - left side
Removed May 10th, 2005
Dr. John Leonetti & Dr. Douglas Anderson
Loyola University Medical Center
Chicago, IL