Author Topic: Recent diagnosis - trying to decide what to do  (Read 14191 times)

Kim Zingale

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Recent diagnosis - trying to decide what to do
« on: October 26, 2008, 09:34:56 am »
Hello! I was diagnosed with a 1.5cm AN at the beginning of August. The only real symptom I have right now is ringing in my ear, but the ABR test showed that my hearing nerve is unresponsive. I'm 26 years old, so the doctors I've spoken with do not recommend watch & wait or radiation therapy. I am inclined to agree with them as there is a lot of time left in my future to wonder what's happening in there.

In terms of surgery, I've talked to my local doctors at Georgetown here in D.C., and I've had a phone consultation with Dr. Fayad at HEI. Dr Fayad recommends middle fossa if I want to try to preserve the hearing, although with the unresponsive hearing nerve, the chance for that isn't very high. I'm willing to go for Translab, but it's hard for me to reconcile the fact that I can hear fine now and I'm going to choose surgery that is going to make me deaf in that ear. The neurosurgeon at Georgetown spoke to me about retrosigmoid, but that was before we got the ABR test results, and Dr. Fayad said that wouldn't be a good option for me because it would leave a lot of tumor in the IAC.

I plan to find out more about having the surgery at HEI, but I'm a little wary of going across the country for it. I know I need to talk to the neurosurgeon at Georgetown again, but I'm not sure how to approach it. Do I tell him what the HEI doc said? I guess I'm looking for advice about talking to the doctors and getting all of the information that I need.

Thanks!
Retrosigmoid surgery Feb. 9, 2009 at Johns Hopkins with Drs. Tamargo and Carey.
http://adventureswithmanny.blogspot.com

JerseyGirl2

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Re: Recent diagnosis - trying to decide what to do
« Reply #1 on: October 26, 2008, 10:39:48 am »
Hi zinger1905,

Welcome to this forum! I live in New Jersey and had the translab procedure at House this past January. I was also a bit taken aback at the thought of travelling across the country for surgery, but quickly came to a high level of comfort with my decision. I flew back East 10 days after my surgery (there's a "guest center" adjacent to the hospital and House Clinic where you can stay both pre- and post-op) and experienced no problems whatsoever. I believe that 10 days is pretty standard, but rest assured that they won't release you until you're ready. All that being said, there are certainly some wonderful surgeons here on the East Coast -- at Georgetown, in New York, and elsewhere, so you should go where you feel most comfortable. And I would certainly tell the neurosurgeon at Georgetown that you've spoken with HEI -- I think he/she needs to know that you're doing your homework and seeking as much information as possible!

Be sure to read the various threads on this forum -- you'll gain a wealth of information from those who are going through/have gone through exactly what you're dealing with and it will hopefully be a great help. You can also order some informative booklets from this ANA website. I think everyone will agree that the more you learn about the AN journey, the better prepared you'll be to select your form of treatment and handle your post-treatment outcomes.

If you do eventually end up losing your hearing (you'll then be considered SSD -- Single-Sided Deaf), there are several ways of coping with it. On this forum you'll discover folks who've become used to the condition and can deal with it just fine, as well as others who've opted to go either  the Trans-Ear or BAHA (a bone conduction sound processor) route.  And I trust you'll find that the consensus of those of us who are SSD is that while it's not a wonderful condition, it's certainly not the end of the world nor the end of the ability to communicate efffectively in our lives.

Best wishes as you continue to gather information and reach the decision with which you're going to feel the most comfortable! Please keep posting and asking questions as you go.

Catherine (JerseyGirl2)
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

MAlegant

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Re: Recent diagnosis - trying to decide what to do
« Reply #2 on: October 26, 2008, 11:32:37 am »
Hi and welcome,
It sounds like you are well on the road to making good sound decisions.  Just fyi, I had retrosigmoid and retained all of my hearing.  I think it very much depends on where the tumor is located its size and shape.  No worries, you'll come through just fine and will deal with whatever is thrown at you. 
Be well,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

leapyrtwins

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Re: Recent diagnosis - trying to decide what to do
« Reply #3 on: October 26, 2008, 02:23:27 pm »
Hi and welcome.

IMO doctors are used to patients getting second (and sometimes more) opinions, so I don't think the doc @ Georgetown would be surprised to know you consulted with the doc @ HEI.  We are talking brain surgery, so patients need to be informed and I think docs respect that.

As far as traveling, I didn't and I can't imagine it - but that's just me and my opinion.  I found very capable doctors right here at home and in hindsight I wouldn't have changed a thing.  If you find the doc @ Georgetown to be experienced and you like and trust him, I'd go with him.  Make sure you do your research though.  If you haven't already, you may want to contact the ANA about their informational brochures; they are very helpful.

As far as being SSD goes, there are options.  I have a BAHA and I really like it.  The surgery was simple, the recovery was fast, and others don't know I'm wearing a hearing aid since there is nothing inside my ear.  It works well for me  :)

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

Jim Scott

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Re: Recent diagnosis - trying to decide what to do
« Reply #4 on: October 26, 2008, 02:43:59 pm »
Zinger:

Welcome!  I'm glad you found the website and forums and decided to post.  I trust you'll make us a resource and use the site and forums to your best advantage. 

Having an acoustic neuroma is no picnic but it's also not an insurmountable condition.  At 1.5 cm, your AN is relatively small so you do have options.  If radiation is off the table, choosing the type of surgery, surgeon and facility becomes a serious endeavor and one that requires doing lots of research, having a few doctor consults and of course, somber consideration and, for the religious, much prayer. 

I trust you'll be doing all of this within the next few weeks.  We're here to help and that help is based on our collective intelligence about every aspect of having an acoustic neuroma.  We want to share what we've learned with you so please consider this website & the forums a resource, one that you'll be using on a regular basis.  We look forward to seeing your future posts. 

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.

Kate B

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Re: Recent diagnosis - trying to decide what to do
« Reply #5 on: October 26, 2008, 07:27:16 pm »
Hi Zinger,

There are similar symptoms between our two tumors.  I had 100% hearing going in with a tumor similar in size to yours.  Mine was 1.5 cm.  also.

I did have middle fossa surgery because statistically there was a better chance for hearing preservation. Like you, I wanted to give it my best shot to retain my hearing since it was intact before surgery. I was also prepared to lose it. I've retained 80% high frequency, 50% low frequency and had 84% speech discrimination. The speech discrimination score is important as sometimes hearing retained is not audible.  Over the past seven years, my speech discrimination seems to be changing causing for some funny conversations with people.

The other thing I was told is that the symptoms like tinnutus that you have prior to surgery most likely stay.  They may be reduced, but symptom may stay. 

Regarding my surgery, I had it at St Vincents (hospital House uses) on November 29, 2001 with Dr.
Brackmann and Dr. Hitselberger.  The staff there was very professional and
used to handling acoustic patients. As a matter of fact, House takes up the
whole sixth floor of St. Vincent's Hospital.  I live in the Chicago area and had no problems travelling.  I was told Airplane travel is recommended for any travel over three hours. 

My surgery was 4-41/2 hours. You complete several tests the day before
surgery  including a hearing test, a meeting with the surgeons, bloodwork
etc..

The day of surgery is interesting.  They typically start the operations in
the late morning/early afternoon. You check into the hospital about 9 am and
you go to the sixth floor and wait in a private hospital room until surgery.
When it is time, you are wheeled down a corridor toward surgery. It seems
funny to remember this, but I remember the sunlight streaming in through all
of the windows. Then you are taken  to a room where you meet with the
anesthesiologist.  The doctor confirms the correct side of the AN and marks
your ear.  I remember the anesthesiologist asking me what I was most afraid
of prior to surgery.  I remember answering her and her reassuring me.  Then
I was out and before you know it they are waking you up and asking you to
wrinkle your nose and smile. These are actually informal observations that
they use to determine your facial nerve outcome.

You are kept in ICU 24 hours and then discharged to your own room. All of
the rooms are individual (private) by design. The first 24 hours were the
hardest for me because I was dizzy.  But before you know it, you are
returning to the sixth floor.    My surgery was Thursday, I was in ICU until
Friday night and discharged to Seton Hall on Monday. (Seton Hall is adjacent
to the hospital and is a facility where you recover). It is like a Holiday
Inn and the charge is a nominal.

Let me know if I can answer any questions you may have.

Kate
« Last Edit: October 26, 2008, 08:13:14 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/

wendysig

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Re: Recent diagnosis - trying to decide what to do
« Reply #6 on: October 27, 2008, 06:49:21 am »
Hi Zinger,
Welcome to this forum.  I can see you'v e already gotten a lot of  good information to  sift through here so I'll try to  be brief.  I hope you will find this forum to be a wonderful source of information and comfort.  Do let the doc in Georgetown know what Dr. Fayad said -- thses docs exppect you to get other opinions and should be wiling to discuss any information you have questions about.  The location of your tumor determines the course of treatment as much as the size does, so if your tumor is located in a way that the retrosigmoid apporach would not allow good exposure of the tumor, your choices are middle fossa or translabrinthine I had the same  choices for the same reason.  I ended up having the translabrinthine approach due to two huge hearing drops prior to my surgery (initially scheduled for middle fossa).  My advice is get several do your homework,get several  opinions and make sure you listen to your gut, it will usually help you make the right decision for you.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Kim Zingale

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Re: Recent diagnosis - trying to decide what to do
« Reply #7 on: October 27, 2008, 07:42:51 am »
Thanks, everyone. I'm going to make an appt with the doc at Georgetown to talk to him about everything again. I'm sure I'll be back soon with more questions!

- Kim
Retrosigmoid surgery Feb. 9, 2009 at Johns Hopkins with Drs. Tamargo and Carey.
http://adventureswithmanny.blogspot.com

sgerrard

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Re: Recent diagnosis - trying to decide what to do
« Reply #8 on: October 27, 2008, 08:47:10 am »
Hi Kim,

It sounds like you are off to a good start. Just to be different, I am going to suggest you look into Cyberknife, a form of radiation treatment. If you have useful hearing to preserve, I think it is worth considering even if you are only 26. There is enough evidence now to conclude that long term complications from radiation treatment will be quite rare, and the success rate of hearing preservation with radiation treatment is generally accepted to be better than with surgery.

A good place to look into it is the Cyberknife support forum. Two experienced radiation oncologists volunteer time to answer patient questions, and other members chime in as well. It might be worth a look and a quick question or two, before you rule out radiation treatment altogether. http://www.cyberknife.com/Forum.aspx.

Of course it is up to you, and we all understand that each patient is different, and must arrive at their own decision about what treatment is best for them. We will support you in any decision you make. Best wishes, and I hope that next appointment goes well.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Kim Zingale

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Re: Recent diagnosis - trying to decide what to do
« Reply #9 on: October 27, 2008, 09:35:54 am »
Thanks, Steve. I met with a radiation oncologist who told me that, although he wouldn't necessarily recommend that I get it, he wouldn't NOT do it for me. So it was another one of those "figure it out yourself" kind of things. I am interested in CK since it's non-invasive and would probably have better hearing/facial nerve preservation, but I do worry about how every doctor says that they can't tell me what things will be like when I'm 50. I'm the kind of person who likes to know what to expect, so I guess that's why my instinct tells me surgery even though my thoughts tell me that radiation would probably be fine. Any advice?
Retrosigmoid surgery Feb. 9, 2009 at Johns Hopkins with Drs. Tamargo and Carey.
http://adventureswithmanny.blogspot.com

Jim Scott

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Re: Recent diagnosis - trying to decide what to do
« Reply #10 on: October 27, 2008, 09:54:38 am »
Thanks, Steve. I met with a radiation oncologist who told me that, although he wouldn't necessarily recommend that I get it, he wouldn't NOT do it for me. So it was another one of those "figure it out yourself" kind of things. I am interested in CK since it's non-invasive and would probably have better hearing/facial nerve preservation, but I do worry about how every doctor says that they can't tell me what things will be like when I'm 50. I'm the kind of person who likes to know what to expect, so I guess that's why my instinct tells me surgery even though my thoughts tell me that radiation would probably be fine. Any advice?

I would seriously consider radiation.  Doctors have to give you all the possibilities for potential risks, be it for radiation or surgery, to avoid being sued, later, if something does goes wrong.  Of course doctors can't tell you what the very long-term effects of radiation may be and that does leave your treatment decision up to you, where, frankly, it belongs.

The CyberKnife forum is very helpful, as is our own board, dedicated to radiation issues.  Many of our members are radiation 'veterans' and can answer your questions from a real-world basis.   Unfortunately, no one can tell you what may happen in 20 or 30 years.  Considering the size of your AN I hope you'll do more research into radiation treatment but if you want guarantees about the future, then surgery may be a better choice for you, although surgery results can be problematic and again, there are no guarantees either way.  I wish it was easier but this is the reality all AN patients have to face, Kim.  As I stated in my previous post to you, having an AN is no picnic.  However, it's a benign tumor and you do have options.  Just know that we'll help as much as we can as you wade through the decision-making process and we'll support your treatment decision and cheer you on during your recovery.  :)

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.

balluff

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Re: Recent diagnosis - trying to decide what to do
« Reply #11 on: October 27, 2008, 01:22:54 pm »
HI zinger1099,
My hubby was diagnosed with a 4mm in the right ear in July and just had the middle fossa surgery(preserve the hearing) last Thrusday and came home on Sunday.:-) Everything looks good so far.
We met with 2 teams of Docs in MN, 1 was pro surgery (U of M) and 1 was pro radiation( Mayo in MN).
He finally decided on the the surgery because, he wanted to know, what his hearing loss would be right away after surgery, as  both teams told us the radation could take the hearing later and he just was not comfortable with not really knowing the long term effects of radiation. And it also came down to the actually team stats/experience of the teams.  How many surgeries had they done. What was the success rate (had serviceable hearing afterwards), facial para issues etc. We found that you need to ask very specific questions and make sure they are not giving you the industry numbers but their actual case numbers.
We also posed the question directly at them, " If you had this what would you with your years of experience and knowledge in this very specific areas do?" We found some would be very honest and just tell you, what and why, some would not tell you anything. We found the WHY to be more important than the WHAT.


Best of luck with your decision making process and whatever you decide to do.

Andrea B



 



   

mimoore

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Re: Recent diagnosis - trying to decide what to do
« Reply #12 on: October 27, 2008, 02:44:34 pm »
Hello and Welcome.
We are here for you. I have a daughter who is 26 and my heart goes out to you. I hope you have a supportive family. Research, research, research.... you will make the right descion for you. Keep us posted.
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

Roger64

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Re: Recent diagnosis - trying to decide what to do
« Reply #13 on: October 27, 2008, 05:07:03 pm »
Hi Zinger1905,

I was recently diagnosis too. I cannot give you any advice on what you should do because it's a very personal choice. However, I would suggest that you meet with all the doctors and meet with a social worker and talk through everything. Anyway, that's what I did and it seem to help.

I personally am going with the surgery option and it schedule for the 30th of this month. In a week or so I can give you an update on my progress.

Roger64

sgerrard

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Re: Recent diagnosis - trying to decide what to do
« Reply #14 on: October 27, 2008, 10:35:16 pm »
I guess that's why my instinct tells me surgery even though my thoughts tell me that radiation would probably be fine. Any advice?

Well, since you asked, sure.  ;)

It sounds like the big question for you is the long term. Do some reading; here are some links to get you started.

Carrie had surgery again this year, 20 years after her first surgery: http://anausa.org/forum/index.php?topic=6786.0

Despite claims that surgery after radiation is more difficult, the actual track record is pretty good, should the need arise. Kathleen had a good experience recently, having surgery 6 years after a failed CK: http://anausa.org/forum/index.php?topic=7072.0

Regrowth can happen with either treatment, but fortunately not very often. You cross that bridge if and when you get to it.

One of several topics on the subject of radiation and cancer, with several notable quotes in it: http://anausa.org/forum/index.php?topic=6779.0.

A survey asking neurosurgeons what they would do: http://www.acousticneuroma.neurosurgery.pitt.edu/docsurvey.html

A recent radiation study result, written by surgeons, not oncologists (first posted by Sandra): http://www.emedicine.com/ent/TOPIC668.HTM.  It concludes:  "patients who have serviceable hearing, no vertigo, and a non-brainstem-compressive or non-hydrocephalic acoustic tumor 2 cm in diameter or smaller are good candidates for stereotactic radiotherapy."

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.