Author Topic: just found site  (Read 5429 times)

Susan B

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just found site
« on: November 23, 2009, 07:45:34 pm »
Hi I am 58 years old and while on our annual vaca to San Diego i was lying in bed listening to the ocean and turned onto my left side and the ocean disappeared. InSept  I found out I had a  profound hearing loss in my rgt ear. Have seen two neurosugeons in Redwood City. The first does open surgery and I told him I didn't want that . He sent me to the next neurosugeon with the caution that I migiht not be accepted because my growth is 2.5 by 1.4 cm and there might not be room for swelling. When I met on Thursday he said he could do it but wouldn't allow me to make the decision then. I had to go home a nd accept that the tumor would stay in my head with the cyber. i was disappointed that I couldn't just say go for it. My recent colllege grad daughter and husband were with me. My sophmore daughter comes home Wednesday night and she hasn't been told anythingI was hoping to have it all settled by then. I tried this post last nite and it ended in cyberspace. Hope I did it right this time. I remain "Sleepless in Berkeley"
Susan B

Tricia (horsekayak)

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Re: just found site
« Reply #1 on: November 23, 2009, 08:24:14 pm »
Welcome, you've found a great place to be...

Hopefully you've had time to start searching and browsing posts...lots of good information, ideas, opinions, sources, etc.

If you havent already,  you might want tol contact Acoustic Neuroma Association and request their free packet of materials...it is worth reading and re-reading. They have a Willing To Talk list of those patients/caregivers/supporters who are willing to talk via phone or email...one of the first folks I contacted via phone has turned out to be one of my biggest pillars of support.  And the responses you get here on the forum will be great sources for thought and support and laughter...you'll see ==just wait till you start getting responses/welcomes to your posts!!!

Take your time, talk to several physicians, get several opinions from those who will actually look at your MRIs.  You will eventually find someone who "clicks" with you...I finally did, and he is one of the ones who encouraged me to check with other docs, to research, to use the ANA site, and to wait until I had some time to process everything that was happening.  It took me 3+ months to get to the point where I felt comfortable making a decision.  That will vary for you, as it did for each of us on this forum. You're going to find that this forum definitely encourages you to be comfortable with what you decide..you actually do have time on your side with an acoustic neuroma in the majority of cases, so get comfortable and start learning all you can..it will ease a lot of the discomfort and anxiety.

Again, welcome to the journey!!

I too cant hear the ocean anymore in my right ear, but I can and will always remember it in my heart.  Maybe not the greatest consolation, but it helps to know that we have resources inside of us (and around us)  that we can draw upon in times like this.



Tricia (horsekayak)-Diagnosed 8/10/09
1.5 cm right side AN
Gainesville, GA (near horses and Lake Lanier)
Linac radiosurgery at Shands Hospital/Univ of Florida  12/1/09  Go Gators!!!

"Excellence is to do a common thing in an uncommon way"...BT Washington

patdel

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Re: just found site
« Reply #2 on: November 23, 2009, 08:38:11 pm »
Hi,  I was diagnosed in June with a 9mmx12mm AN.  At first I was scared to death but after reading on this site, researching, researching, researching, I feel that in the end, it will be ok. I am in W&W right now and due to have another MRI very soon. (I thought Jan. but just got a letter today from dr. who wants it before Christmas).  I encourage you  to look into all options and ask lots of questions of drs. So far, I have seen two drs. who both recommend surgery. I have an appt. in december with a dr. who does radiation.  We'll see........

Best of luck and do get the info this site offers. It's very useful. They also had a symposium in the summer and CD's of the talks are available to purchase so you can hear what they had to say at various workshops.They are very informative and have helped us understand our options a little more.

Pat
Pat

CHD63

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Re: just found site
« Reply #3 on: November 23, 2009, 09:19:57 pm »
Hi Susan .....

Welcome to this Forum of caring, supportive friends ..... who have this common aspect of acoustic neuromas.  We are here to listen and to share with each other.

Tell us a little bit more about what you have learned about your AN.  The location of it, as well as the size of it, are both factors in making a treatment decision.  Other than the hearing loss, do you have any other symptoms?

This is a scary time, but as you can read here we have many success stories and we are here to be of whatever help we can to make your journey easier.

Thoughts and best wishes.  Let us know how you are doing.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

JerseyGirl2

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Re: just found site
« Reply #4 on: November 23, 2009, 09:26:12 pm »
Hi, Susan,

I'm sorry you've been diagnosed with an AN, but hope you'll find much useful information and good suggestions on this forum.

I gather from your message that you live in California. You might consider sending a CD copy of your MRI and the audiology report to House Ear Clinic in Los Angeles. One of the doctors on staff will contact you for a free phone consultation, and I think that many on the forum would recommend doing this. Here's the link with the pertinent information:

http://www.houseearclinic.com/acousticneuromaconsultation.htm

I live in New Jersey, had my translab procedure done at House in January of 2008 and found it to be an amazing experience. I'll hasten to add that there are excellent AN surgeons and treatment centers throughout the country, as you'll see when you do some reading on the forum.

Best wishes as you continue your research!

Catherine (JerseyGirl 2)
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

leapyrtwins

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Re: just found site
« Reply #5 on: November 23, 2009, 09:51:25 pm »
Hi Susan and welcome to the Forum.

An AN of 2.5 cm means you are getting close to the threshold where radiation is usually not an option.  So while ANs typically don't grow fast, you shouldn't wait too long if you think you are going to have radiation.  You should check out Dr. Chang @ Stanford.

Best,

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: just found site
« Reply #6 on: November 24, 2009, 04:38:45 pm »
Hi and welcome, Susan ~

Receiving the acoustic neuroma diagnosis is no fun, but at least you can honestly tell your daughter that the tumor is benign and treatable.  Apparently you're planning to undergo non-invasive radiation treatment, as many AN patients do - quite successfully. 

As you probably know by now, we're an a eclectic group of AN patients ( as well as some caregivers) with a wide rage of perspectives.  Our goal is to encourage, inform and support other AN patients and to inject some humor into our comments when we can, while never dismissing the emotions that are sometimes strained while one is dealing with an acoustic neuroma and any issues that may arise following surgery or radiation.

I trust your treatment decision will be the best one for you - and we'll look forward to reading your subsequent 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.

wendysig

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Re: just found site
« Reply #7 on: November 28, 2009, 11:25:56 am »
Hi Susan and welcome,

I'm sorry you have an AN but this is a great place for information and compassion and understanding.  The AN diagnosis is quite shocking initially, but as Jim said, they are benign and very treatable. 

I'm sure the doctor you saw wanted you to have time to learn more about your options in order to make an informed decision. Several of our members have had Dr. Chang at Stanford to their Cyberknife procedures and really liked him, so he would be a good person to consider.   Since you are seriously considering Cyberknife, it might be a good idea to contact the Cyberknife Support group.  The people there are great too and there are two wonderful doctors (radiation oncologists) who are very active on that site -- Dr. Spunberg and Dr. Medberry, who are also great about answering questions.  Of course, this is just a suggestion, and there are folks right here who can answer questions from the patient's point of view, Jim, Phyl, Tumbleweed and more as well as those of us who looked into the possibility of CK or GK but opted for (or required)  surgery for one or another.  Please feel free to ask any and all questions.  We are here to help.

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!

jaylogs

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Re: just found site
« Reply #8 on: November 28, 2009, 01:06:19 pm »
I echo everyone's else's comments...I think the worst part about when you first find out that you have AN is that you feel you are alone and not even your family members can understand what you are going through.  To a degree they can't, but they are there for support and then there's all of us here on this website who DOES totally understand what you are feeling and that helps a LOT.  I thought I was being stupid and a complainer because I had this tinnitus and then the loss of hearing and then balancing issues going on until I got my MRI results back...I was like "HA!" :)  It felt good in that respect that I had some concrete evidence there and it WASN'T all in my head.  You'll find that this period of time is the hardest part, trying to decide what to do...there's sooo many factors to consider. But as everyone has said and will say...take your time, take deep breaths, try not to dwell on it too much. And you will also probably find that at some point you'll research TOO much and be even more confused.  But in the end, any decision you make, as long as it feels right, will be the right one. So use this space as an opportunity to ask questions...vent...whatever, because we've all been there! :) Take care and good luck with everything!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

wendysig

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Re: just found site
« Reply #9 on: November 28, 2009, 01:18:00 pm »
Susan,

Sorry I forgot to include the address for the Cyberknife Support Group in case you want to contact them it is cyberknife://wwwsupport.org/forum/

Best,
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!

sgerrard

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Re: just found site
« Reply #10 on: November 28, 2009, 05:52:22 pm »
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.

moe

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Re: just found site
« Reply #11 on: November 29, 2009, 12:04:33 am »
Hi Susan,
A HI and welcome to our little group. I did not go the CK route, because of the size of my tumor.
You have time on your side to do your research.
It will be OK. The symptoms may be more noticeable but the AN grows very slowly, so remember that as you are looking into options.
Maureen ;)
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

 


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