Author Topic: When life gives you lemons  (Read 5859 times)

HappyGirl

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When life gives you lemons
« on: November 21, 2011, 03:29:28 pm »
add vodka!

Hi all,

My name is Trine, I'm 32 and was just today diagnosed with an AN on the left side (2.3 cm that is starting to decompress brain-stem).  Apparently I've had it for years (seriously lots of years).  I woke up one morning about 7 years ago with most of my hearing gone on my left ear.  It slowly returned during the day and when I went to the doctor they said it was probably an air buildup behind my eardrum.  Anyhow, most of my hearing returned - I thought it was all, but it wasn't.  I also got tinnitus, but at hearing test years later my doctor told me he thought I had had a viral infection that had decompressed my ear canal and damaged the hair fibers (I'm sure they have a name). 

Anywho, I just went back in this year for another hearing test as I wanted a hearing aid.  I can still hear pretty fine (I have moderate to severe hearing loss), but in crowded areas it is a pain.  So, my new audiologist made me see an otolaryngologist who made me have an MRI (this past Friday).  To my shock and dismay, the radiology tech had seen "something" and the radiologist wanted more pictures.  So, when I left, knowing that there was "something" in my brain, I started researching and I figured that it was probably an AN.  Sometimes I just hate being right.   :-\

My MD told me this morning that radiation was not an option because of the size.  I was, however, cleared to go visit my family at Christmas in Denmark where my husband will meet us (he is currently stationed in the Middle East.)  I'm trying to keep it all together, which is hard since my husband's family is in Michigan, mine is in Denmark, and my husband is in the Middle East.  So far, though, I've managed to put a brave face on for my fantastic 4-year-old daughter.  Luckily, I work as a legal assistant for a medical malpractice defense attorney - he's got my back and has already emailed all his contacts to find the best doctor.  I guess if I had to get diagnosed with a brain tumor, this was a good place to be. 

Of course, I'm military and I'm in Georgia so I have to stay within the southern states, so no House Ear or MGH for me.  I did, however, note that some doctors from Houston,  Texas was listed on ANAUSA website.  Have anybody tried them?  Or are anybody at Emory good?

I have spent some time reading everybody's posts, and it has helped (and made me scared).  I'm sure I'll have lots more questions, but for now I'm going to go home as I have done nothing productive at work today.  ::)

CHD63

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Re: When life gives you lemons
« Reply #1 on: November 21, 2011, 03:50:26 pm »
Hi Trine and welcome to this forum .....

So sorry you are having to deal with an acoustic neuroma in the midst of several other struggles you have going right now.  My suspicion is the reason your doctor told you radiation is not an option is not because of its size, but the fact that it is pressing on your brainstem.  In either case, you are most likely looking at surgery in the near future.

I do not know anything about Georgia doctors, but hopefully others on here do.  Nor am I military, but I know there are others on here who are and can lead you through their experiences.  You do want the most experienced doctors you can find in the treatment of acoustic neuromas, that your military insurance will allow.

Many thoughts and prayers.

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

Jim Scott

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Re: When life gives you lemons
« Reply #2 on: November 21, 2011, 04:18:39 pm »
Hi, Trine - and welcome ~

Although I'm sorry you've been diagnosed with an acoustic neuroma, I'm glad you discovered the ANA website discussion forums.

I don't have any suggestions about AN-experienced doctors in your area but I will caution you to get more than one medical opinion before making a treatment decision and to follow the ANA's advice to seek a doctor with extensive experience with acoustic neuromas. 

Please don't be put off by some of the problems AN patients experience that you may read about, here.  Although AN surgery (and even radiation treatment) can produce some complications, that is not inevitable and often such issues can be resolved with therapy and time.  I was diagnosed with a 4.5 cm tumor, underwent both surgery and radiation and came through with no real problems.  This is not such a rare occurrence with AN patients.  Realistically, there can be no guarantee of the outcome of surgery or radiation (or, in my case, both).  All you can do is be cautious and probing when selecting a doctor and of course, be as pro-active as possible as your treatment plan is presented to you.  Never allow any doctor to rush you into anything.  Take notes during your consults and bring a friend along to help and support you.  Oh, and don't be hesitant to ask a question here or seek clarification.  We're not doctors but we are collectively experienced in this AN adventure you're just beginning.  Our purpose is to inform, advise and, mostly, support you as you work your way through this medical challenge.  Please feel free to avail yourself of what we try to offer.  Meanwhile, know that you will be the thoughts and prayers of many.  Now, 'don't be a stranger'! :)

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.

Cindyswart

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Re: When life gives you lemons
« Reply #3 on: November 21, 2011, 05:53:22 pm »
Take a look here on the east coast at Carolina Neuroscience Institute on Raleigh, NC- Just has my AN surgery and am doing well. PM me for more info if you are interested.
Diagnosed 4/19/11 An 1.5x1.9x2.0
Surgery 8/23/11, Dr Fukushima.
Total tumor removed. SSD.
Second surgery 11/11/11 for abscess

I'm gona work like I don't need the money
I'm gona laugh like I'm not afraid to cry
I'm gona dance like nobody's watchin'
I'm gona love while I still have the time!

ppearl214

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Re: When life gives you lemons
« Reply #4 on: November 21, 2011, 06:25:37 pm »
Trine

I'm with you on the Vodka, if I coud partake! :)

Hi and welcome.

Ok, in GA..... Dr. Greg Maddox at Emory University...... best around in GA.  I know of some that had treatment there (radiation and surgery) and have done well. FYI... home office for the ANA is north of Atlanta and they may have local names for you as well.

It is my understanding that for radiation, 3cm is usually the cut off size, but it all does depend on location of growth as well as other factors. If your's is pressing against the brainstem (mine was "kissing" the brainstem), please make sure you obtain multiple opinions for the best approach possible.

I'm not sure if you are looking to have treatment in GA or in Denmark (so your family can help you out) but Germany may also be a consideration.  We do have many on these forums from EU and hoping some chime in soon with thoughts/inputs.

BTW, I work in support of the US military (my day job) and we have many active duty/military families here on the forums. Know that we are VERY proud of your husband (and you!), I commend him for all he is doing.... and know that what my job/role is in support of the US Military is helping him to do all he can do to help keep our country proud and to help keep him safe and sound! :)

Again, welcome!
Phyl
« Last Edit: November 21, 2011, 06:28:01 pm by ppearl214 »
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

HeidiC

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Re: When life gives you lemons
« Reply #5 on: November 21, 2011, 07:25:43 pm »
Trine,

My husband is Army and I just had my AN removed surgically, so I know what you are about to go through.  When I read yor post it seems very familiar...I have a 5 and 7 year old, we are Army stationed in NC, my husband was deployed to the middle east as well but was sent home because of my surgery.

I would recommend my Dr's but NC is in the North Region, so I'm guessing it won't be a choice for you.  I never checked with Tricare to see if I could go to a different region or not so I don't know if that would be an option.  Personally I would stay as close to home as possible...my Dr's are a 2 hour drive away from me and it was a very tough ride home upon my release from the hospital.

Do your research and you are sure to make the decision that is right for you. :)
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.

HappyGirl

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Re: When life gives you lemons
« Reply #6 on: November 21, 2011, 08:06:16 pm »
Thanks to everyone - you're all invited to lemons with vodka  ;D

I will definitely take your advice and do some more research on doctors. 

I keep on telling myself that this isn't as terrible as I feel it is, but man is it hard!  I'm usually that annoyingly cheerful person that's never sick (really, no colds, flues or anything like that), but I'm having a really hard time finding that happy girl, except when my daughter makes me laugh.  What is really frustrating is that I had just gotten back into school and getting all my core requirements done so I could apply for a BSN program (by the way, going back to school at 32 is a wee bit scary!).  Now, well, I have no idea if that will ever happen.  I try to be optimistic, but I also feel that I need to prepare myself for and accept the fact that this is serious and I could very well end up with life-long side effects.

@HeidiC ~ Yeah, I believe I have to stay in the southern region.  There must be some good doctors here.  Did your husband come home for good or did he just get extended leave?  Since my husband is stationed in Bahrain (Geo-batchelor) he will only get to come home for 30 days.  At least it's better than none. ^-^

@Phyl ~ Vodka at my house at any time  8)  I'm planning on having the surgery here in the U.S.  I've lived here for 10 years so this is home now.  Plus, I know all the medical lingo in English, I'd be clueless in Danish.

@Cindyswart ~ I think I have to stay with the southern states; however, I'm going to call Tricare to find out.  If I can go out of my region I'll hit you up for some info.

@Jim Scott ~ I'm glad to see that somebody with a scary, large AN had a good outcome  :)  You give me hope!  And, no, I won't be a stranger.  This forum is exactly what I need   :D

@Clarice ~ I think you may be right about the location.  I have to admit I don't recall everything that was said during my phone conversation this morning.  Perhaps I'll call my MD back tomorrow...

HeidiC

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Re: When life gives you lemons
« Reply #7 on: November 22, 2011, 09:53:59 am »
@HeidiC ~ Yeah, I believe I have to stay in the southern region.  There must be some good doctors here.  Did your husband come home for good or did he just get extended leave?  Since my husband is stationed in Bahrain (Geo-batchelor) he will only get to come home for 30 days.  At least it's better than none. ^-^

Trine,
Originally they just extended his R&R to 30 days and scheduled him to come home a few days before the surgery.  If they had done any more than 30 days it would have to be approved by commanders higher up and there was a fear that they would deny it it altogether so we went with the 30 days.

Fast forward to coming up on the end of the 30 days and I can't drive yet and still need some help caring for the kids...about a week and a half before that we got another letter from the dr basically saying I still needed my husband around and that he wouldn't recommend redeployment at this time and emailed it to his commander in the mid east and took it to the commander at the Rear D.

They have approved him staying home, they haven't said he isn't going back to complete the deployment, but they are sending his stuff home from the mid east so we think he will just be with the Rear D for the remainder of the deployment.  He does go into work every day, has since the original 30 days leave was over, but they let him out if I have an appt or if the kids have dance class etc., since I still can't drive.  So far they have been great about it...but I am starting PT 2 times a week, my daughter has dance class 1 time a week and my son will be starting a class in Dec 1 time a week-so I am afraid they are going to start getting upset about letting him out so much to drive us around.  I guess we will find out lol!  I hope to be able to drive soon!

~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.

HappyGirl

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Re: When life gives you lemons
« Reply #8 on: November 22, 2011, 11:54:35 am »
well, my husband is still getting his R&R while we're in Denmark and then the added 30 days.  I guess I should be tankful that my dad can come over too. 

I wonder if anybody went into depression upon getting this diagnosis.  I've always dealt with the blows life has given me, but this seems to have knocked me out.  It even took me over two hours to get out of bed this morning, and it felt like everything I had to do took so much effort.  I've never been on any anti-depressant medicine (actually, birth-control pills is about the only thing I've taken for an extended time period), but I'm wondering if perhaps it would be a good idea to get some.  I just can't get into a funk when I'm alone with a child.

Chelle

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Re: When life gives you lemons
« Reply #9 on: November 23, 2011, 11:40:42 am »
Hi Happy Girl,

I'm a sister newbie (diagnosed last week) and "Happy Girl"  who always looks on the bright side, while at the same time recognizing that everything is not roses all the time.  I also recently went back to school, last year I started full-time on a masters in social work and if you think it's hard at 32, try 52!  My baby is in college though, so having the house to myself (I'm divorced) does help when it's time to do school work. It's great to be cheerful and strong, but you're right, this is damn scary and sometimes even us cheerful types don't want to be happy and strong.  One of my girlfriends commented a few days ago after I told her my diagnosis, said, "Oh thanks God it's not cancer.  You're strong, you'll get through this."  To which I replied, "Maybe I don't want to be strong!"  I know I'll get through it, and you will too, especially with the great support of the caring folks here.

The best advice I've seen is to get lots of opinions and read about people's experiences, but remember that we're all different, even is the tumors are the same size and the symptoms seem the same. 

Hang in there, take care of yourself and give yourself permission to not always be strong and cheerful!

Peace,
Michelle
1 cm right ear
Diagnosed 11/15/11
Wait and see, currently getting other opinions

alabamajane

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Re: When life gives you lemons
« Reply #10 on: November 23, 2011, 01:43:04 pm »
Trine,
Welcome to the "club" no one wants to join... I was diagnosed three yrs ago and w&w with annual MRIs for that timeframe.. mine grew during that time from approx 1cm to 2.8cm at the time of my surgery 4 wks ago .. location and symptoms in my opinion will be more important than just size.. mine had grown into the CPA and was pressing on the brainstem and neighboring nerves. . I had tinnitus all along but really had good hearing at about 92% recognition,, so hearing loss is not always an indicator of seriousness either.. Drs. were surprised I had such good hearing after getting "in there" and seeing tumor. Mine had involved my facial nerve which ended up being cut.. but I knew from increased symptoms in last 6-8 mos that it probably had been compromised.. my tongue was numb  all of the time, like when you burn it with coffee and side of my face had some tingling sensation most of the time..
I post to let you know since you may have to stay in the South, that I had mine done at UAB hospital in Birmingham AL. I too was unable to go to House or Chicago or some of the other places mentioned on here. We all have to deal with our own situations.. if you are interested in getting second opinion from my Drs. let me know and I will forward info. They were super and the hospital and nurses could not have been better. One of the top 20 hospitals in the country...
I understand completely your state of mind,, depression would be very easy to slip into.. but fight it. . know that there are many of us that have been there and through this and you can vent, talk, question us anytime.. and NO you don't have to be the strong one all the time,, except for your daughter. My boys are grown, but they were still scared for me..it is a very hard time of life and hard journey to go through. I found that just knowing what to ask Dr was difficult.. you will know so much more after surgery than you do now.. .. and if it is pressing on brain stem already,, radiation is out of picture as I was told because it tends to make tumor swell some before it "dies" back.. but then I am not a Dr.. that's just what I was told..
Good luck , enjoy your vacation time with husband and family and then get back to work on second opinions and research.. you will finally become comfortable with the decision you make and will be surprised how much peace that will give you.. I hope your husband is able to stay here with you for how ever long it takes you .. I am still early in recovery but after a few weeks of getting meds and anesthesia out of body, , I am feeling much more like myself..
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

cindyj

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Re: When life gives you lemons
« Reply #11 on: November 23, 2011, 02:25:52 pm »
Hi, Trine (and everyone else :)), just chiming in as I live in GA also (Cumming).   Phyl is right, Dr. Mattox at (Emory) has done many AN surgeries...we also have several others - Javed/Bhansali have done several of the patients I know here with huge tumors.  I am going to send you my phone number in a personal message so you can call me if you'd like.  Are you in the Atl area?  We are having our next support group meeting next Sat, Dec 3rd.  Would love to have you join us - there are usually several patients of both Dr. Mattox and Javed there who you could talk with.

Hope to talk and/or meet soon,

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

HappyGirl

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Re: When life gives you lemons
« Reply #12 on: November 25, 2011, 10:08:36 am »
@Chelle ~ That's funny.  My friend texted me and told me that we just had to stay strong and positive... I was like, what in the heck is all this "we" stuff (would prefer to write another word, but it would probably be edited out  :) )  I mean, she's nice, but she cannot joke around with this.  I can, it's my tumor, and I can "claim brain tumor" when I do something stupid, but she cannot do it for me.  I need to tell her in a nice way.  I don't want to be reminded by other people of my condition.

@alabamajane ~ yes, I would love to get the contact info for your doctors.  I want to talk to as many people as possible!  Also, I'm glad to hear you're doing better after your surgery.  I guess what I really have to work on is just accepting whatever comes and then learn to live with it.  Regardless, I'm bound and determined to stay the same as much as possible; wear my hair in a ponytail and go to the store even if I do end up with facial paralysis.  Right now I don't have any symptoms pointing on facial nerve involvement, but I know that it doesn't really mean much.

@cindyj ~ I'm in Augusta.  I did look at the support group meeting, but I can't make it this time  :(  I'll probably give you a call later next week.  I have finals coming up and an essay I haven't even started on which is due in two days  :o  So, I need to get off of here and do some school work.  By the way, do you know how long time it usually takes people to get back to work?  I work as a legal assistant, so as long as I can sit and type I'll do fine  ;D