Author Topic: I'm so confused  (Read 5014 times)

Melissa778

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I'm so confused
« on: March 04, 2008, 09:06:36 am »
I went to my appt. yesterday with Dr. Lee at the Cleveland Clinic for a consult.  I have a 1.7 right sided AN.  He stated that the tumor woudl need to be removed and that I was not a good candidate for GK.  I myself for personal reasons did not want to go the GK route anyway.  He stated that it is pushign slightly on my brain stem and worries that at this size it's getting close to impeding my facial nerve....however he wants me to wait until July to do a follow-up MRI ane that is when we will talk surgical options.  He did however state that I would have total hearing loss in my right ear.

Why would he want me to wait until July if it's close to causing some facial nerve disturbance? why not go in and do it now?  How is he certain it will be complete hearing loss?  Is there anythign they can do to help the hearing loss?  Hearign aids, implants, etc?  I'm 29 years old with two small children....I'm really not ready to lose my hearing, even if it is only on one side.

Any info anyone can provide would be great.  I am also going in search of another opinion.

Melissa
1.6cm X 1.6cm diagnosed Jan 30 2008
Translab Surgery scheduled for May 15th with Surgery went well, got ALMOST all of it.
GK to zap the rest on 10/22/08
2010 MRI showed no new growth tumor measuring at that time at 1.1 x .4
2011 Holding steady
2012 new growth 1.7 x .7 :( :(

Lorenzo

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Re: I'm so confused
« Reply #1 on: March 04, 2008, 11:20:46 am »
Hi Melissa,

I presume that if he removes it surgically he will do it by translab which destroys your inner ear on the side, so you'll be deaf on that side. There are other option in surgical terms, but I'm not so sure of the options in that area. Somebody else here will know. on another point, have you looked into CK? How much is it pressing on your brainstem? have you consulted a radiosurgeon that does CK? You have a good size for Ck I would think, so it might be an option to look into.

All the best, Lorenzo
CK, Stanford, Drs Chang and Hancock, Dec 04,
doing great now.

1wareagle

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Re: I'm so confused
« Reply #2 on: March 04, 2008, 12:54:11 pm »
Melissa,

     I would check into every option before surgery. Your AN is small enough that you have more than one option. If I were you I would do everything to preserve what hearing I had left. SSD is no fun!!!

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)

BDB

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Re: I'm so confused
« Reply #3 on: March 04, 2008, 01:32:25 pm »
Get a second or third opinion,look into gk or ck at least hear what they say.Good luckBruce
1.2 cm an rt.side CK MAR.08

matti

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Re: I'm so confused
« Reply #4 on: March 04, 2008, 02:00:47 pm »
Melissa - Has your hearing been affected?

I had perfect hearing prior to surgery and because of that my surgeon chose the Middle Fossa Approach.  It is the best surgical option for preserving the hearing nerve, but again not a guarantee. I  ended up losing the nerve beacuse once in there he found that the tumor had completely splayed the facial nerve and in order to save it, had to sacrafice the hearing. There are a few on here who had middle fossa, were able to save the nerve and have servicable hearing.

I agree with the other posters, research all options.

Cheryl

3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

chopper

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Re: I'm so confused
« Reply #5 on: March 04, 2008, 02:38:45 pm »
The single sided deafness really isn't that bad.  Wow, I can't believe I just said that.

I had mine removed at your age, and I was upset....no, actually, pissed off, that I'd be losing what I thought was perfectly good hearing on the affected side.  Definitely shop around, I did it for a year before deciding on who to go with.   My almost wife and I had a boy about 4 months ago, and even though I sleep on my good side, I still hear him no problem, even if he's just moving around in the middle of the night.  I would take SSD vs. facial nerve damage any day, easier to manage and it gives you an out for LOTS of things.   Looked into the implants, bone conduction, all that crap...decided it wasn't worth the added expense since there was one perfectly good ear left and the body should compensate, which, honestly, it does! 

Gotta remember these are slow growing tumors, so waiting a month or two between MRI's won't make a lot of difference.  If anything, it will give the doc an idea of how fast it is growing.
3+cm AN, hit the chopping block 5 Sep 06 at the Skull Base Institute

Was 4.5cm at it's largest point, completely removed.  All motor functions normal.  Only complaint is SSD on the left side, which was expected anyway.

OMG16

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Re: I'm so confused
« Reply #6 on: March 04, 2008, 02:47:49 pm »
Chopper I am fairly new to the forum but have read many of your posts as I was lurking for a good 2.5 years.  I congradulate you on your new son.  What a blessing for you and your wife.  You have such a great attitude and have inspired many of us.  It is an honor to finally sort of cyber meet you. 16

Sorry for the hijack carry on.  I just needed to wish Chopper a howdie doodie.
I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

Kate B

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Re: I'm so confused
« Reply #7 on: March 04, 2008, 06:26:41 pm »
I went to my appt. yesterday with Dr. Lee at the Cleveland Clinic for a consult.  I have a 1.7 right sided AN.  He stated that the tumor woudl need to be removed and that I was not a good candidate for GK.  I myself for personal reasons did not want to go the GK route anyway.  He stated that it is pushign slightly on my brain stem and worries that at this size it's getting close to impeding my facial nerve....however he wants me to wait until July to do a follow-up MRI ane that is when we will talk surgical options.  He did however state that I would have total hearing loss in my right ear.

Why would he want me to wait until July if it's close to causing some facial nerve disturbance? why not go in and do it now?  How is he certain it will be complete hearing loss?  Is there anythign they can do to help the hearing loss?  Hearign aids, implants, etc?  I'm 29 years old with two small children....I'm really not ready to lose my hearing, even if it is only on one side.

Any info anyone can provide would be great.  I am also going in search of another opinion.

Melissa

Melissa,

The fact that it is pushing slightly on your brainstem may be affecting his decision for surgery.  After radiation treatment, there is swelling of the tumor which could cause more pressure against the brainstem.

That being said, please send a set of your films to House Ear Clinic. They will read your films and report for free. It is worth their opinion even if you don't believe you will travel there. 

I visited several doctors before making my decision and learned something new from each one.  They are human and all have different reasons.  You might call the doctor back and ask the nurse to have the doctor call you back as you have one more question.  Then I would ask him the question you've posted here.

What is your current hearing level?  Translab is often the surgical procedure if your hearing is less than 50 db. It gives the best look at the facial nerve. 

All the best,
Kate
« Last Edit: March 04, 2008, 06:29:28 pm by Kate B »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Kate B

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Re: I'm so confused
« Reply #8 on: March 04, 2008, 06:43:03 pm »
Melissa,
Here is the House information regarding free consults:
House Ear Institute also does a free consult when you send your MRI and reports.  Once received, they respond quickly.
Here is the info from their website.
<If you, a family member, or someone you know has been diagnosed with an acoustic neuroma, you may consult with a doctor from the House Ear Clinic team. We will be happy to review the MRI scans and audiogram and speak with you by telephone (we must have a copy of the actual MRI film, reports are not sufficient by themselves).

Send the MRI scans by express delivery (be sure that you are able to track the package) to:

House Ear Clinic
Attn: Acoustic Neuroma Website Consultations
2100 W. Third Street, 1st Floor
Los Angeles, CA 90057

You can expect to hear from a House Ear Clinic physician within 24 hours of our receipt of your information. You may also call or fax a House Ear Clinic physician at:

Telephone: (213) 483-9930
FAX: (213) 484-5900

This mail/telephone consultation is free of charge. (This offer does not apply to office consultations.)>

Kate
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Mark

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Re: I'm so confused
« Reply #9 on: March 05, 2008, 08:47:00 pm »
Melissa,

I'll offer my 2 cents to the other suggestions you have received.

1) The only thing I would agree with the Dr. Lee you consulted with is that surgery for a 1.7 cm AN will in all likelihood result in loss of all usable hearing in that ear. Translab for certain given the nature of the approach which destroys the inner ear, retrosig would be more customary for most docs for an AN that size as Middle Fossa tends to be more appropriate for smaller AN's, but either way the chance of retaining hearing would be 20% or less. My AN was 2 cm and that was the % I was quoted by several neurosurgeons. As Kate, I believe, pointed out, if you opt for surgery translab provides the surgeon with the best view of the facial nerve which most would agree is the higher priority if saving hearing is not likely

2) Dr Lee's assertion that you are not a candidate for radiosurgery would probably not be supported by second opinions from those knowledgeable in that treatment option which I'm willing to bet he is not, or he only does surgery. My AN which was slightly larger than yours was also slightly impacting the cerebellum but not anywhere near a point where any potential radiation induced swelling would be problematic. The commonly accepted "ceiling" for AN radiosurgery treatment is around 3 cm which you are well under. AN's all grow out of the auditory canal and expand into the cerebellpontine angle towards the cerebellum. If you took a 100 3 cm, 2 cm or 1 cm AN's and laid their MRI's over each other I would venture a pretty confident guess that there would not be a significant variation in position on 9 out of 10 of them within each size grouping

3) I think your next step is to get a second opinion from a skilled radiosurgeon, or preferably a neurosurgeon who does radiosurgery such as I had with Dr. Chang at Stanford. Since you went to Cleveland Clinic, you might consider the Univ of Pittsburgh which is renowned for its work with GK. You could also post on the CK doctors board at http://www.cyberknifesupport.org/forum/ and ask questions to the doctors there. Dr. medbery and Chang will also review scans for free and provide recommendations. Personally, I would not see a value in sending anything to House Ear. While they are certainly on the top end of outcomes and a leader in AN Surgery, they are not experienced practioners of radiosurgery and are not on the leading edge of that treatment option which is what you need a second opinon on. If you want to have surgery, they are certainly a great option, but they offer no insight of value on radiosurgery in my view.

4) AN's are extremely slow growing ( avg 2 mm year) and the facial nerve is much more resistent to damage from the AN than the hearing nerve with it's millions of sound producing tiny hair like fibers. Usually, AN's can get quite large before there are noticeable symptoms in the facial nerve. Permanent facial palsy is generally the result of impact from the surgical removal itself. Conversely, AN's that undergo radiosurgery have facial nerve damage on the order of less than 1%. While I wouldn't expect his recommendation to wait six months to jeopardize the facial nerve to any extent, if you are experiencing symptoms then there is not much point to the wait and watch approach in my view.

Like everyone else here, I'm not a clinician, but those would be my thoughts based on my own journey expereince as well as reading posts on this and other AN boards for 7 years.


Good luck

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Mark

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Re: I'm so confused
« Reply #10 on: March 05, 2008, 08:52:32 pm »
Melissa,

Just one follow up point I neglected on my previous post. In regards to usable hearing which you indicate you have, the preservation rates for GK which is administered in one dose typically are in the 60-65% range. Cyberknife, typically done in 3 fractions is demonstrating rates in the 75% range. My hearing is essentially unchanged 6 years after CK treatment. I thought that would be useful information to compare with the surgery rates for an AN your size.

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

leapyrtwins

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Re: I'm so confused
« Reply #11 on: March 05, 2008, 10:26:30 pm »
Melissa -

I had surgery to remove my AN, but I agree with Mark.  I don't think at 1.7 cm your AN is too large for radiation if that's the route you should choose.  I'd talk to someone who does GK or CK and go from there.

As far as your question about help with hearing loss, there is an implant (called a BAHA) that is available, as well as a hearing aide called a TransEar.  One of these two options may be right for you.  If you do a search under "BAHA" or "TransEar" you can read posts that others have written and learn more about them.

Not every one hates SSD and they just learn to cope with it, but personally I couldn't stand it after my surgery at the end of May, so I had BAHA surgery just yesterday morning.  Others rave about their TransEar. 

Whatever treatment you choose and whatever you ultimately decide to do about hearing loss, please know that we are here to support you.

Best of luck,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Kaybo

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Re: I'm so confused
« Reply #12 on: March 06, 2008, 05:08:48 pm »
Melissa~
I agree with Chopper 100% about everything EXCEPT I sleep on the good ear so my sweet hubby HAS to deal with the kiddos -- I need my beauty sleep, you know!!    :D  What a good hubby he is to hear (& I assume get up with) the kids!!
K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

lori67

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Re: I'm so confused
« Reply #13 on: March 06, 2008, 05:15:21 pm »
Yes, being deaf in one ear does occasionally have it's advantages - not having to get up with the kids or the dog in the middle of the night is definitely an advantage!  It's the only time I get any peace and quiet!     :D

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

yardtick

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Re: I'm so confused
« Reply #14 on: March 06, 2008, 06:48:24 pm »
I hear you Lori, LOUD and clear!!!!  When I sleep on my right side, I hear nothing from my left ear.  A bomb could go off and I'd sleep through it.  I know my boys lie a little about what time they get in on the weekends.  Oh well, i'st a bonus for them, because their father saws logs.  I was blaming Louie for my hearing loss before I as diagnosed. LOL ;D

Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games