Author Topic: Was diagnosed yesterday....terrified.  (Read 4678 times)

Jackee

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Was diagnosed yesterday....terrified.
« on: August 31, 2012, 08:16:40 am »
Hello,

First let me say that I am so very glad that this forum is here and I am grateful that all of you take time to support others. I was diagnosed yesterday with AN and I am simply terrified. At this point, I can't stop crying and I am so very fearful of what this all means. I know that my fear stems from my complete lack of knowledge on AN and I have come here to hopefully get educated and be able to come to terms with my diagnoses.

I am located in Pensacola, Florida. My husband is active duty Air Force and we are stationed at NAS Pensacola. I am 40 years old. I have 3 great kids.

From what I was able to remember from my doctor's appt. yesterday (I was pretty much in shock), my tumor is 8mm. My AN is on my right side and I have lost significant hearing (high tones). I don't believe I have any other symptoms. I have not had any facial issues or have not had any dizziness.

Since I was in such shock yesterday, my doctor suggested I do some research over this weekend and call him on Tuesday with my decision on where I want to start. (It's just so hard to even type those words)

Anyway, again, thank you all for being here for those of us just coming to terms with this.

Jackee

Jim Scott

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Re: Was diagnosed yesterday....terrified.
« Reply #1 on: August 31, 2012, 12:56:44 pm »
Hi, Jackee ~

I'm sorry you're the receipent of an acoustic neuroma diagnosis but glad that you discovered the ANA website Discussion Forums and decided to register and post.

Your initial reaction to your AN diagnosis- stunned disbelief - is pretty normal.  The bright spot is that at 8mm, your AN is quite small and should be amenable to non-invasive radiation, should you choose that option.  Frankly, if preserving your hearing in the affected ear is a primary concern, treating the tumor with radiation now may be an option you'll want to consider because procrastination is tempting but often comes at at a high price.  So, my suggestion (you'll be getting others) is to tell your doctor you wish to consider radiation treatment, if feasible and see where that takes you. 

In the meantime, you can begin your research right here on the ANA website.  Go to our home page http://www.anausa.org/ and read the brief articles under 'Acoustic Neuroma Introduction' (on the lower right-hand side of the page).  Then, click on 'ANA Store' and go to 'booklets'.  You can order ANA booklets that go into deeper detail about ANs, treatments, etc.  They are very reasonably priced at $3. and under and I believe you'll find them very helpful.

For now, if you have a question, please feel free to ask it on these forums. Although we're not doctors and cannot offer specific medical advice as AN patients, our membership has a wealth of practical knowledge they are eager to share.  All you have to do is ask.  :)

I wish you success as your AN journey begins.

Jim
« Last Edit: August 31, 2012, 12:58:15 pm by Jim Scott »
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.

LakeErie

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Re: Was diagnosed yesterday....terrified.
« Reply #2 on: August 31, 2012, 05:50:51 pm »
Jackee, I had significant symptoms that led me to believe I possibly had an AN. An MRI confirmed it,
so I was not totally surprised. However, I was shocked at the size which was almost 5 cm's. The shock wore  off as I learned more about AN's and their treatment. I believe you will have the same experience as you learn more.
As your initial measurement is relatively small at 8 mm, you will have time to analyze your situation and explore your options. My tumor significantly compressed my brain stem, so I was told I had 5 or 6 weeks to remove the tumor, meaning I had no choices and no time. You can take a reasonable time to evaluate your position and not feel rushed.
As is often said here, there is life after AN treatment and there will be for you, too. I felt little apprehension by my surgical date because I was prepared through my own research and by the stories related on this forum. I feel your fear, too, will abate as you proceed in this part of your life. Good luck
« Last Edit: August 31, 2012, 06:43:01 pm by LakeErie »
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

BeckyMax

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Re: Was diagnosed yesterday....terrified.
« Reply #3 on: August 31, 2012, 06:32:27 pm »
Jackee, your situation is very similar to mine, I am 40 and was diagnosed with a 5x7mm left AN in February.  I cried for days, spent any time I wasn't crying on this and other websites researching.  Although your doctor wants you to get back with him next week, you do NOT have to make a decision that quickly.  I saw 3 different docs, compared their thoughts etc before deciding on watch and wait.  I had my 6 month MRI last month and there had been no additional growth, I go again in 1 year.  My point is that next week will change nothing.  Take your time, get educated and make the decision that is best for you.

I started a blog on my experience if you want to read it.

http://anbecca.blogspot.com/

Also, do give yourself the time to grieve, its okay to cry, to be scared, it is normal and healthy to be shocked.  Come here and ask as many questions as you need.   Request the new patient packet here. http://anausa.org/index.php/contact-us. When i got the packet the booklets were all in there and they were free.  That may have changed.

Also, check into the support groups in your area, I got lucky and my group was meeting just 2 days after I was diagnosed.  It was extremely helpful to see people who had been through treatment or were wait and watch.  Our next meeting is next weekend and I'm so glad to have a resource if real live people to talk to.

Becky
7mm x 5 mm Left AN, diagnosed 2/9/12
7mm x 6 mm  8/12
9mm x 7 mm  8/13
Cyberknife 12/13

skipg

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Re: Was diagnosed yesterday....terrified.
« Reply #4 on: September 01, 2012, 06:37:38 am »
Good advice from all, now it is time to take a breath and enjoy this Labor Day weekend. It may seem hard to put this aside but believe me it will help just to get out and allow yourself to be distracted by all that life has for you. Come Tuesday go into the research mode but do not allow yourself to be consumed by this distraction you've been given. You have time and tons of support here. God bless and keep a positive attitude.
Skip
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

HeidiC

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Re: Was diagnosed yesterday....terrified.
« Reply #5 on: September 01, 2012, 07:07:34 am »
Jackee,

Our experience seems similiar in that my husband is Army, and my tumor was small as well.  I am 35 years old and have a 7 and 6 year old.  You do have time to decide what you want to do, though personally I would not choose "watch and wait' since your hearing has already been affected-that is to say that you don't need to decide this week, but I would do my research and come to a decision as soon as you feel confident in it.

It is a very personal choice.  I chose surgery because my balance, and to a small degree my hearing was already affected.  If you search for my name you can see my posts last year that might explain my choice better.

Your local support group might help you to learn more about your choices-surgery, radiation, watch and wait; and help to clear things up for you so you can make your own informed decision.  It is scary, but it gets a bit easier as one becomes more informed.

Hugs,
~Heidi
Diagnosed 6-24-11 left side AN 3mm x 3mm
33 years old at time of diagnosis
Mid Fossia surgery 10-06-2011
with Drs Adunka and Ewend at UNC.

PamJ

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Re: Was diagnosed yesterday....terrified.
« Reply #6 on: September 01, 2012, 09:27:38 am »
Hi Jackee I also had an AN and had it removed 18 months ago, once you get over the shock and read as much as you can you will soon realise it's not all doom and gloom and I've no regrets in having mine taken out.  There are so many people on here who will help you and Jim is a mine of information and encouragement.  Your AN is very small and as they are slow growing you have plenty of time to think about how you want to deal with it, it is a very personal choice but I had mine out because although very unusual it was causing me a lot of pain.
March 2011 - Acoustic Neuroma translab surgery
July    2011 - Tarsorrhaphy surgery
June   2012 - BAHA abutment surgery
July    2012 - Tarsorrhapy reversed
Sept   2012 - BAHA (Pronto Pro) fitted
Sept   2013 - Diplopia Surgery
April   2014 - Platinum chain surgery

Jackee

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Re: Was diagnosed yesterday....terrified.
« Reply #7 on: September 02, 2012, 08:15:24 pm »
Thank you everyone for posting your kind words and sharing you personal experiences. It has been several days since my diagnosis and I have been able to stop crying (mostly). I still have a sick feeling in my stomach that I am sure is from nerves. Mornings are difficult because when I wake up I remember that this is not a dream and is for real. I am doing my best to stay positive especially for my kids. I don't want them to see me so upset. I have told them that I have growth that is causing my hearing to be affected and we are trying to figure out the best treatment. So far, they seem to be okay.

On Tuesday, I plan to call my Dr. and get a digital copy of my MRI. I was told that I can start looking at treatment options at University of Alabama at Birmingham or at University of Florida at Gainesville. My Dr. mentioned that both are good but I was wondering if anyone here has had any experience with either of these places. I guess it wouldn't hurt to check out both.

I guess at this point, I really need to know that there is life after this. I am still afraid about what the ramifications are. You guys give me hope. I just want life to be normal or at least as normal as possible. But at this point, I am still just trying to get through each hour of the day without breaking down.

Well, that is enough for tonight. I need to try to sleep. Thanks again for the support. I does mean a lot and I am truly grateful.

Jackee


« Last Edit: September 03, 2012, 08:48:52 am by Jackee »

ombrerose4

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Re: Was diagnosed yesterday....terrified.
« Reply #8 on: September 02, 2012, 08:18:03 pm »
Hi Jackie,

I still remember my feelings of shock when I was diagnosed 3 years ago. I was numb and couldn't think, but after the first 24 hours I started researching and educating myself. It's a process and it takes time. Your tumor is small which gives you plenty of time to learn about your options. Making a treatment decision that is best for you is the hardest part of this AN journey. Just remember we are here to help you through it.
Lauren
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

garyh130

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Re: Was diagnosed yesterday....terrified.
« Reply #9 on: October 13, 2012, 06:38:37 pm »
Hi Jackee,

I was diagnosed last week and am working through it.  I went into my doctor with a basic concern about hearing loss in my right ear.  He referred me to an ENT that did some hearing test and confirm the hearing loss.  The ENT was concerned about the unilateral hearing loss and recommended an MRI with assurances that it will likely be okay.  Long behold he called to tell me it is likely a Vestibular neuroma 1/2 to 3/4 inches in size and it took a while to sink in.  I did start researching and getting a better understanding of what is going on is making me feel better.  Still is an overwhelming thing to hear....but I am continuing to educated myself which seems to help with my new challenge....  I just found this website a few hours ago and it is really comforting knowing people have been here before us, and we are not alone...

Take Care,

Gary

It is what it is

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Re: Was diagnosed yesterday....terrified.
« Reply #10 on: October 15, 2012, 08:23:04 am »
Hi.  My tumor was also small and after researching options I chose middle fossa st HEI and was able to preserve my hearing.  I would strongly suggest sending your MRI to medical centers specializing in treatment of this type of tumor. Even though you may be grieving the diagnosis of the tumor, you seem to be doing an excellent job researching your options. Congratulations!  There is life after treatment. I wish good things for you.  :)

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

 


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