Author Topic: Newly Diagnosed  (Read 12353 times)

marystro

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Newly Diagnosed
« on: July 04, 2006, 09:52:50 am »
Hi everyone,

I am so glad to find this forum.  Support group does help!

I found out I had "muffled" hearing about 6 months ago.  Finally went to see a ENT who immediately ordered an audiogram.  2 weeks ago I go the result with 25% hearing loss in the left ear.  Then he ordered an MRI last Friday.  I got the result yesterday that I have AN of 2.3 cm with 2.1 cm in CPA region.  Symptoms I have are the hearing loss and hissing sound in my left ear.  He gave me House Clinic information and I called them.

Dr. Slattery at House called me back within 1 hour.  I am impressed with his patience, understanding and control of the situation.  I also made an appointment with Dr. Doherty at UCSD (since I live in San Diego).  Does anyone know Dr. Doherty (who will be joining UCSD's Dr. Jeffrey Harris) this month?  Is she from House?  I heard there was a Dr. Doherty at House before.

Researching all the sites on AN.  I am so scared at this time about surgery and even radia-treatment.  But if I don't do anything and it continues to grow, it will not be good!

Mary
« Last Edit: July 04, 2006, 01:58:03 pm by mstromitis »
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

cinnamon

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Re: Newly Diagnosed
« Reply #1 on: July 04, 2006, 01:17:12 pm »
Hi Mary,

    Welcome to the club. I just registered a couple of days ago. I was diagnosed on May 10th but it took me some time to talk about my diagnosis with others. I am sorry I don't know the doctor you are talking about. I see you are from San Diego. I visited there a couple of years ago and the weather was incredible!

     I hope you are doing okay and trying to gather lots of information I am sure. I am scheduled for surgery on July 26th. Everyone is so caring and supportive. If you have questions please ask and you will get answers. I think I have asked so many questions that I am just overwhelmed. My an is 18mm as of May but I had a second mri on 06-30 and I am waiting to see if their has been any changes. I vomitted during the first one with the contrast so we did a second one which went much smoother.

    Hope your 4th is a blast.

           Lisa
2.0 cm tumor removed suboccipital on 07-20-06
Left side facial paralysis and deaf ear. Just now researching hearing aid after 6 years!

marystro

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Re: Newly Diagnosed
« Reply #2 on: July 04, 2006, 01:24:05 pm »
I guess I am going through emotional roller coaster.  On one hand I want to be positive but reading all the treatment options and potential complications, it gets scarry sometimes!  According all the websites I visited, AN sounds like a very serious condition and if not treated it will be fatal.  However, I am so afraid of losing my hearing and facial functions with the surgery route.  I am not sure if radia-treatment is for me with an AN of 2.3 cm.  Just very unsettling...

Discouraged,
Mary
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

russ

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Re: Newly Diagnosed
« Reply #3 on: July 04, 2006, 01:52:23 pm »
 Hi Mary
  I'm wondering if you have established a growth pattern by having more than the one MRI?
  Maybe you know sometimes the worst damage comes from treatment itself.
  There a potential drawbacks from treatment or, no treatment immediately.
  Did Dr. say how far from the brain stem it is? Judging by what your report, I'm guessing about 1.75 cm.
  Please try not to make snap decisions upon treatment even if HEI was one opinion.
  Mind if I ask your age?
  Russ

marystro

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Re: Newly Diagnosed
« Reply #4 on: July 04, 2006, 02:03:38 pm »
Hi Russ,

I just turned 50 and am in excellent health.  I even brought my cholesterol level down by 40 points over the last 9 months and blew my doctor away!  I am a very optimistic person in general and very outgoing.  This AN thing just threw me off course.  I even made a summer resolution to learn how to swim now that my 8 yr old son Alex is in the swim team.

I will not make hasty decision and will want to weigh all my options.  Don't know how far it is from the brain stem since I just got the MRI written report and read it to Dr Slattery at House who asked me to fedex him the MRI film tomorrow.  He wants me to have an ABR test (not sure what it is yet).  He will call me back by Friday once he gets the MRI and continue phone consultation with me.  He is very in control and knows what to do.

I am also scheduled to see Dr Doherty at UCSD locally 7/26.

I am just going through so much emotionally the last 36 hours.  I guess it is normal.

Thanks so much all for you out there supporting me!

Mary
« Last Edit: July 04, 2006, 02:05:25 pm by mstromitis »
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

Mark

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Re: Newly Diagnosed
« Reply #5 on: July 04, 2006, 02:03:56 pm »
Hi Mary,

There may be a few exceptions out there but I think all of us that have been diagnosed with an AN go through an emotional roller coaster as you're doing now. The "ride" will continue as you go down the path of understanding the two different treatment options. One day an appointment with a doc or after doing some research you'll learn something that will depress you while after the next appointment with someone else you'll discover something that will make you feel much better.

It is true if an AN is allowed to growth indefinitely that at some point it's size will compress everything around it and be fatal, but that doesn't start to be an issue until it gets larger than 5-6 cm. Your AN at 2.3 is just slightly larger than mine and at a typical growth rate of 2 mm / year you have probably had it 10-12 years. It would probably be another 10-15 years before it even got close to a life threatening size, so you have lot's of time to figure what you're most comfortable doing.

The conventional rule for where radisourgery is a viable option is less than 3 cm, so you are well within that parameter and certainly have a choice available to you.

Since you have already contacted HEI for a surgery consult I would suggest you also seek out a very experienced radiosurgery doc. The docs at House are certainly among the best in performing surgery but they will not give you a very unbiased view on radiosurgery in my opinion.

neither Radiosurgery or surgery given guaranteed outcomes or come with zero risks. One difference between the two is that surgery results pretty clearly track with size while radiosurgery results do not appear to be size dependent. The larger the AN , typically the rates of hearing and facial nerve preservation drop with surgery while they do not alter much with Radiosurgery. You will find many valid opinions on both options from a lot of very smart people, but it has been my observation that results between the two options are fairly similar below a size of 1 -1.25 cm. From that point up to the 3 cm level radiosurgery hearing and facial nerve preservation rates typically become more favorable. Obviously above 3 cm most people end up with surgery so comparisons  become meaningless.

As you do the research, the choice you're most comfortable with will eventually become evident, but there is no one "silver bullet" that will make the choice clear which reflects the multitude of opinions out there on both routes.

Best of luck

Mark

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

cinnamon

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Re: Newly Diagnosed
« Reply #6 on: July 04, 2006, 02:05:42 pm »
Mary,

 Ã‚     I totally relate to how you're feeling. I cried uncontrollably for 2 days. I asked god why me? How do I prepare myself for something so serious. Just take each day one at a time. I like to be informed but I too became overwhelmed with too much information so quickly. Everytime I went to the doctor I became more afraid and just told of the possible side affects. I think the people on this forum are the ones who can really help us. A doctor does not personally know what to expect but just based on statisics is able to tell you what could possibly result from the surgery. I wake up each day and think to myself- I am going into surgery to most likely lose my hearing but I feel fine right now. How can I do this?The second ear surgeron I seen explained more about the facial paralysis and got me all upset about it. You can take in so much at a time and then you have to let it settle before taking in more information. Please feel free to share your feelings. I wish I would have came on this site sooner, but I just bottled things up. I work in a dental office and I am so afraid of facial paralysis. I have to be confident with my job and need to be professional. I have been an emotional roller coaster too just thinking about the what if's. I think you just focus on the postive but try to be prepared for some side effects just in case.

 Ã‚    Are you thinking about surgery? Just curious.

 Ã‚            Lisa
2.0 cm tumor removed suboccipital on 07-20-06
Left side facial paralysis and deaf ear. Just now researching hearing aid after 6 years!

marystro

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Re: Newly Diagnosed
« Reply #7 on: July 04, 2006, 02:17:54 pm »
I am not sure which treatment yet until I talk to the doctors.  I just found out this yesterday from my MRI report and am not prepared for information I have read.  I like Mark's reply saying that I have time.  I will let the group know after my phone consult with Dr. Flattery (House) this Friday.  Keeping my fingers crossed.

You guys are awesome!!!  Alex said you all care about me  :D.  Thank you!

Mary
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

Joef

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Re: Newly Diagnosed
« Reply #8 on: July 04, 2006, 02:37:33 pm »

I dont know if that was the same Dr. Doherty that was at House ... if it was ... I liked her a lot ..I remember her because she would come and visit me early every morning ...
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

Sefra22

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Re: Newly Diagnosed
« Reply #9 on: July 04, 2006, 02:53:05 pm »
Hi Mary,
I spoke to Dr. Slattery myself just last night. I felt very comfortable talking to him. I was just diagnosed a few weeks ago, and have been riding the rollercoaster, too. I am considering surgery because I don't want to risk acquiring more symptoms such as balance problems or facial paralysis. Right now, I only have a hearing loss.  I have pretty much decided that if I am going to have surgery, I would choose the translab approach because of the lower risk of facial paralysis (my biggest fear). Dr. Slattery told me that if I were a member of his family, he would recommend that approach for them. I knew then that I was making the best decision for ME. I asked the Dr. if I would be alright to wait until January to have it removed. He said that I should have another MRI in September (3mos. after my first) to see if there was any growth. He told me some tumors can double in size in 6 months! I had not read that anywhere before.  :o
Anyway, keep researching, and then decide what is best for YOU.


Lisa from Portland, Maine age 46
Diagnosed June 2006
15mm X 17mm AN right side 80% hearing loss
GK March 14,2007 Dr. Noren, Providence RI
1 Year follow-up MRI shows "slight shrinkage".
2 Year follow-up MRI shows "No Change".
3 Year follow-up MRI "stable".
BAHA surgery 4-22-09 BP100 Sept. 2009

marystro

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Re: Newly Diagnosed
« Reply #10 on: July 04, 2006, 02:59:16 pm »
Do you think Dr Flattery may be pressuring you to get surgery since it's his specialty?  Double in size in 6 months is scary thought.  I really dread surgery.  How big is your AN?

Mary
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

Sue

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Re: Newly Diagnosed
« Reply #11 on: July 04, 2006, 03:37:48 pm »
Hi Mary:

Welcome to this exclusive club.  You will find that the people here are friendly and helpful.  I understand how upsetting this is as I am fairly new to this also.  I was told my diagnosis on March 13 of this year. Not so long ago.  I had never heard of Acoustic Neuroma or Gamma Knife surgery, which is what I ended up doing on April 18.  My ENT that I was finally refered to did not discover my AN as he did not order an MRI (with contrast and SHAME ON HIM, by the way).  Last summer I did not have facial numbness. It wasn't until I went to my family doctor the first of Jan and told him that I was experiencing some numbness on the left side of my face, near my ear, that I was sent to a neurologist who ordered the MRI. Took me over 6 weeks to get that office visit tho! That was a long wait.) Finally!  An answer to the ear problems I'd been having since the late fall of 2004.  The nurologist passed me off to the neurosurgeon who sent me to Dr. Modha, who recommended radiosurgery for me.  He just looked at me and said "Microsurgery is a very big deal."  I asked him, "If I were your mother, is this what you would recommend?"  He said, Yes.  So, I put my trust in him and went with the Gamma Knife procedure.  It went very well, and I go this month for a 3 month MRI.  The information was overwhelming for me, and I'm still learning about this stupid thing in my head, but it really boils down to only three choices - Watch and Wait, Microsurgery, or Radiosurgery.   You have a medium sized tumor so watching and waiting doesn't seem much of an option.  Microsurgery is performed on many patients and their outcome can be just fine. Experience of your team is important. Does your gut scream at you "Just get the darn thing out of there!"  Is that important to you or can you live with it inside your head, but dead, dead, dead after radiosurgery. Surgery takes 6 weeks to recover from, sometimes months depending on what happens to your balance.  Radiosurgery took me about three weeks to get back to normal (whatever that is for me! ;D). But then, I'm 60 if that made any difference. I took a steroid drug to help with swelling and that wasn't much fun, but the effects of that lasted about 8 or 9 days. Insomnia is a common side effect.  I chose the "zap it" approach and others on this board have done that also - but perhaps by a different procedure - Cyber Knife, fractionated stereotactic radiosurgery (FSR), Proton Beam, and maybe some of them will tell about their experiences.  Quite a few on here have had highly successful surgeries and are very loyal to the facility that they went to and will be happy to tell you their stories.  HEI in Los Angeles comes highly rated.  Emotionally, it's nice to come here and see that you aren't alone in the world.  This is supposed to be sort of rare, but I'm thinking - I don't think it's THAT rare!!  In March when I first signed on, I was like number 993 or something like that, and now there are 1,174 members!  So about 180 people came on this board since the first part of March!!  That's just the ones who have a computer and come looking.  There must be many more out there who never bothered to find this place.  Anyway, you are not alone and the "why me" thing will fade, in time. I told my doctor, "I can't believe I got something like this, I'm such an ordinary person."  He looked at me and said, "Well, it's an ordinary tumor."  I thought, well, okay...everybody is going to get something in their life and this is our something.  At least it's kind of interesting. I also have diabetes - that's so boring!!  And even tho this is the most freakin' annoying thing I've ever had, it's a whole lot better than something else we could be talking about.  So, it's the worst thing that maybe has happened to us, but it's not the worse than can happen. We have to take the time to go through the stages - all the classic stages of grief, and then we are supposed to end up with acceptance. All of us do that in different ways and some of us take longer than others to get there, but that is the goal.  In the meantime, find the doctor that you are comfortable with and talk about your options and what makes the most sense to you and what gives you the outcome that you desire. Then just go for it. Sorry I was long winded today....guess I was in a chatty mood!!  Hang in there, Mary!!  It'll all be fine. 8)

Sue
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

marystro

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Re: Newly Diagnosed
« Reply #12 on: July 04, 2006, 03:59:50 pm »
Sue,

This is so good to hear from all of you.  I took my son out for a little beach ball game in the park just now.  It was great!  This thing makes me re-think my purpose in life.  I am trying to make the best of it by enjoying the moments I can with my family.  I used to be a workaholic (am still somehow).  Now my family is priority no. 1.  I am in business development with a large telecom company.  I have done quite a bit of international travel in my life.  Now I prefer to stay home if possible.  On the bright side, I can tell my company that I need to be home due to my medical condition and I think they will be ok.  Sometimes, something happens for a reason.  I am still optimistic.  Feeling a bit better than earlier today.

Mary
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

Sefra22

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Re: Newly Diagnosed
« Reply #13 on: July 04, 2006, 05:16:25 pm »
Do you think Dr Flattery may be pressuring you to get surgery since it's his specialty?  Double in size in 6 months is scary thought.  I really dread surgery.  How big is your AN?

Mary

I am sure that surgery is recommended for me because of my age (44) and health (good overall). He explained that as I get older, the risk from surgery is higher, so if I'm going to have it, I should do it now while I'm young ;) and strong. With radiation there is no guarantee that it won't come back. He said if I were in my 60's, then radiation would be the better option.  My AN is considered "medium" at 15mm x 17mm. I really liked his advice about waiting just a few more months, and having another MRI. I dread surgery, too. It is on my mind every second of every day! But even more than that, I dread the long recovery and the burden placed on my family and co-workers.
Lisa from Portland, Maine age 46
Diagnosed June 2006
15mm X 17mm AN right side 80% hearing loss
GK March 14,2007 Dr. Noren, Providence RI
1 Year follow-up MRI shows "slight shrinkage".
2 Year follow-up MRI shows "No Change".
3 Year follow-up MRI "stable".
BAHA surgery 4-22-09 BP100 Sept. 2009

gemaste

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Re: Newly Diagnosed
« Reply #14 on: July 04, 2006, 06:35:12 pm »
Rest ass;ured you can get though this.  I made it almost a year now.  My surgery was about five hours.  My recovery was 6 weeks when I went back to work.  Only side effect is a loss of hearing on the surgery side.  Otherwise i as good as i was before even better.  i now appreiciate things more.