Author Topic: pre-treatment options/concerns  (Read 5939 times)

dsnyder

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pre-treatment options/concerns
« on: January 13, 2011, 09:52:52 pm »
I'm new to this forum so please forgive me if I haven't posted correctly. I just need to talk with people who have had this experience and can guide me in the right direction. I'm 51 years old and discovered I had a AN in the Left ear April 2010. At that time the tumor was 1cmx5x5, 6 months later the second MRI showed it to be 1cmx7x7 so my doctor said I need to decide on treatment within the year. I have been reading a lot of information. All sounds scary to me. I want to preserve my hearing and do not want to have any facial nerve problems. I'm told I will have balance issues after surgery. The thought of vertigo is very distressing. I would like to know what to expect with surgery. What is the pre-op procedures, what is post-op like, are you sick, can you function, do you have problems with eating, speaking, facial muscles after surgery? So many questions. I just want someone to be completely honest with me and tell me what to expect with surgery. I am not considering radiation because my doctor said that can cause the tumor to become cancerous down the road. With a tumor my size can't I just watch it for a longer period of time before it does any more damage.

leapyrtwins

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Re: pre-treatment options/concerns
« Reply #1 on: January 13, 2011, 10:12:16 pm »
Hi D.  Welcome to the Forum.  You posted just fine  :)

It's perfectly normal to be scared.  I know I was.

Everyone's AN Journey is unique, but lots of us (myself included) had good outcomes from treatment.  I chose surgery over radiation, but that was my personal choice.  You'll have to make your own decision.

I'm not a doctor, just a patient, but what your doctor told you is incorrect.  Radiation will not cause an AN to become cancerous down the road.  

You should contact the ANA for their informational brochures.  They are free for the asking and very worthwhile.  

With an AN of your size you should have both radiation and surgery as options, but it all depends on the location of the tumor.  You should consult with a doctor who does radiation (or radiation as well as surgery) since it sounds like your doctor only does surgery.  Docs who only do surgery tend to recommend it; docs who only do radiation tend to recommend it.  I was lucky enough to have a doc (neurotologist) who does both so he explained each and let me make the choice.

I decided on surgery and I'll be perfectly honest with you.  It was major surgery, and the first couple of days were not pretty, but things steadily got better from there.  I had double vision for 2-3 days post op, I had balance issues (like most people, but the body learns to compensate fairly quickly), I had slight facial nerve paralysis that a dose of steroids cleared up, and I had major nausea for 5-6 days.  I had "metallic" mouth for several months post op.  I also had dry eye, dry mouth, and major fatigue for several months post op.  I was never unable to speak, unable to eat, or unable to function.  If I had to do it all over again, I'd make the same decision.  It was right for me.

As I said earlier, everyone's journey is unique, but for me the worst of my "issues" was SSD (single-sided deafness).  My docs tried to save my hearing nerve, but they were unable to.  Hearing nerves, unlike facial nerves, don't regenerate.  There are solutions to SSD - basically learning to adapt or getting assistance in the form of a TransEar or a BAHA.  I opted for a BAHA and am extremely happy with my choice.  

I returned to work part-time (desk job) at 2 1/2 weeks post op and full-time at 4 weeks post op.

My life is, and has been, normal for quite some time now.  The only thing I can't do now that I could do before is hear out of my left ear.  My surgery was in 2007 and I was 45 1/2 at the time.

I'm sure others will chime in soon with their experiences.

Best,

Jan
« Last Edit: January 13, 2011, 10:24:07 pm by leapyrtwins »
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

dsnyder

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Re: pre-treatment options/concerns
« Reply #2 on: January 14, 2011, 09:22:48 am »
Thank you so much for all of your information. Especially the issues you faced after surgery. That is really my biggest concern. I feel fine now. I only have 20-30% hearing lose in my left ear and tinnitus all the time. Otherwise I feel good. So why have a surgery now that is going to make me sick, off balance, maybe have facial muscle problems before I have to. Can't I just wait till the tumor is bigger and causing more problems? What is the problem with waiting?  I've read so many other peoples online posts and their tumors were much larger than mine. What are the pros and cons of waiting longer?

CHD63

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Re: pre-treatment options/concerns
« Reply #3 on: January 14, 2011, 09:32:23 am »
Hi dsnyder and welcome to this forum of caring, supportive friends!

Jan has given you very good information so I will try to not repeat anything she said.

I want to preserve my hearing and do not want to have any facial nerve problems. I'm told I will have balance issues after surgery. The thought of vertigo is very distressing. I would like to know what to expect with surgery. What is the pre-op procedures, what is post-op like, are you sick, can you function, do you have problems with eating, speaking, facial muscles after surgery? So many questions. I just want someone to be completely honest with me and tell me what to expect with surgery. I am not considering radiation because my doctor said that can cause the tumor to become cancerous down the road. With a tumor my size can't I just watch it for a longer period of time before it does any more damage.

Like you, I was terrified upon hearing the diagnosis and my number one concern was losing my hearing, second was facial paralysis.  My AN was over 2 cm when diagnosed and because of a previous MRI being clean, it was deemed to be a rare rapidly growing type.  In fact the post-surgical pathology report (a month after diagnosis) gave the size as 2.6 cm.  Therefore it was strongly recommended that I have surgery and I wholeheartedly agreed.  What sent me for diagnosis was the swooning/disequilibrium and mild hearing loss in one ear.  No other symptoms pre-surgery.  Other than the MRI, the only other test pre-surgery was an audiogram (plus the usual EKG and blood work which is quite normal for any major surgery).  [If you have other symptoms, you could have additional tests.]  I had 80% hearing, with 100% speech discrimination in my AN ear.  100%/100% in my right ear.

My surgery was 5-6 hours long, then I was in the ICU for 24 hours before being moved to a regular, private room (I was at Duke-Raleigh Hospital ..... a wonderful facility!).  Having been through a similar brain surgery on the other side 14 years earlier (different reason, different surgeon, different hospital) when I struggled so with nausea and headaches post-op, I told my doctor of my extreme fears about this.  He assured me they would do everything they could to minimize those possible side effects.  I woke up in the ICU mildly nauseated which was quickly dealt with and no headache ..... never did have a headache, but some people do.  Like Jan, I had mild double vision for a couple of weeks and I had significant balance problems.  However, my case is different than most because it was my second retrosigmoid surgery and now I have no functioning vestibular nerves.  Because the acoustic neuroma is technically a vestibular schwannoma, removal of the AN requires removing the vestibular nerve.  Sometimes the vestibular nerve has already stopped functioning before AN removal and the patient's brain has already compensated so the adjustment is relatively easy after surgery.  Sometimes it has not been affected pre-op so it takes a few weeks for the brain to adjust to having signals only from one side.

I never had any facial, swallowing, or taste issues before or after surgery.  Much depends upon exactly where your AN is located (as well as size) and whether it is a "sticky" tumor or not.

The hearing in my AN ear post-op is at 20%, but still with 100% speech discrimination so I have excellent results with a Widex digital hearing aid.  I have significant tinnitus but most of the time I can successfully re-focus and put it to the background.

My balance today at almost three years post-op is very good, except in the dark and/or on uneven surfaces.  I have learned many strategies to keep myself upright through vestibular therapy.

Like Jan said, the radiation causing cancer has pretty much been debunked so you might consider consulting with an expert in GK or CK during this decision-making time.

I don't know in what part of the country you live, but there are excellent facilities for both AN surgery and radiation in many places.

So glad you joined us.  Stick around, ask away, and most of all let us know how you are doing.

Just saw your second post regarding waiting.  The pro of waiting is gathering more information and the AN could possibly stabilize at the size it is.  The con is sudden total loss of hearing and pressure on the facial nerve (when that happens it is more difficult to preserve full facial function).  It is difficult to know what to do but since your AN seems to be growing, I personally would not wait too long before making a decision for treatment.

Many thoughts and prayers.  Clarice
« Last Edit: January 14, 2011, 01:11:44 pm by CHD63 »
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

Mickey

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Re: pre-treatment options/concerns
« Reply #4 on: January 14, 2011, 10:32:16 am »
Perspective from a W+W! I go for yearly MRI`s. If I had noticed that my AN was growing I would have had it treated. Its been goin into 4 years and so far "stable" so therefore with minimal symptoms no intervention required, +I`m 62 now. AN`s grow very slowly but if they are growing it gives you time to plan your course of action. There are so many positive outcomes especially with smaller ANs. Do your homework, pick your choices and don`t forget to confur with the great people on this website who have been thru the process which will help you along. Remember AN treatment has come a long way and everthings going to be alright! Best wishes, Mickey

moe

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Re: pre-treatment options/concerns
« Reply #5 on: January 14, 2011, 10:36:22 am »
Hi and Welcome!

Great previous posts. I'd like to add that no two AN's are alike or even similar (kind of like snowflakes or fingerprints!)
The nerves respond so differently depending on the location of the tumor. It's always good advice to seek a second opinion if you have that option. You will see that every doctor has their own opinion, and they aren't always the same!

 Your age is a factor too. Older people tend to go for the surgery, while the younger ones go for the radiation/gamma knife option if possible.

This is probably THE most difficult part of the AN journey, deciding on the best option. Keep posting here and we will give you support.

My tumor had completely squashed my hearing/balance nerve (also the face nerve >:() so I had completely compensated and had pretty good balance post op!
Just the headache, which went away. I was home walking and resting within 5 days. Back to a slow routine in 6 weeks, and started driving at 8 weeks. Then light exercising.
I have had facial surgeries and have the BAHA for hearing, so life is good. (Tinnitus post op is the main thing that brings me down, but I can ignore it when I'm out and about).

Let us know how things progress. We care!
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

Kaybo

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Re: pre-treatment options/concerns
« Reply #6 on: January 14, 2011, 10:57:18 am »
WELCOME!!
Do you mind telling us what part of the country you are in?  That would maybe help people be able to direct you to different facilities.  I had my surgery a LONG time ago so my outcomes might be a bit different than what they would be today, but I would be more than happy to chat with you if you would like to talk to a real person that has "been there"!!  Feel free to PM me with your number and when is a good time to talk.  If you are in the US or Canada, I have unlimited long distance!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Jim Scott

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Re: pre-treatment options/concerns
« Reply #7 on: January 14, 2011, 03:55:24 pm »
dsnyder ~

Hi and welcome.  I'm sorry you have to deal with an acoustic neuroma but glad you discovered the ANA website and decided to join the discussion forums. 

Previous posters have offered a pretty good synopsis of the AN surgery experience.  As you can see from their posts, because we're unique and every AN situation/patient is different, there is no template for AN surgery experience.  However, I'll add my experience to the mix for whatever that information may be worth to you.

I was 63 and in good health (no heart, spinal, digestive or joint problems) at the time I was diagnosed with a large (4.5 cm) acoustic neuroma.  I had gradually lost all hearing in my left ear over the preceding 5 years but accepted it as 'aging' and connected it to my former profession as a radio announcer.  I adjusted.  However, over a six-month period preceding my diagnosis, my balance noticeably deteriorated, my sense of taste pretty much disappeared along with my appetite, resulting in drastic weight loss (30+ pounds) that alarmed my wife, who was puzzled as to the reason I no longer seemed to enjoy her good cooking.  During this time, I experienced intermittent sharp pain on the side of my skull and, along with all these symptoms, I was growing very lethargic.  I procrastinated calling our PCP but my wife, being eminently practical, called for me and made it clear that I was going, despite my (foolish) protestations that 'I don't need a doctor'.  She realized that I most certainly did, even if I wouldn't admit it and did the right thing, as she usually does in these situations.  Our friendly PCP guessed my loss of appetite might be related to a thyroid condition and sent me for an (unpleasant) test to check that out.  The results were negative.  His second guess (as to why I had lost my sense of taste) was a possible sinus condition, which necessitated my getting an MRI scan.  Bingo!  My sinuses were fine, thanks but there was this big, fat blob on the MRI scan that was quickly diagnosed by the doctor as an acoustic neuroma.  He said it was far too big for radiation treatment and that I would require surgery.  Like you, I was somewhat apprehensive, even though he assured me the tumor was almost definitely benign and that it was operable.  I did the internet research (and found this website and a host of friends) and after one frustrating consultation with a local neurosurgeon who seemed intimidated by the size of my AN, I found a compassionate, very experienced, respected neurosurgeon in New Haven, Connecticut, about 30 miles from my home.  He had been operating on acoustic neuromas for over 30 years and was very attentive to my concerns  regarding facial immobility, (sound familiar?) although hearing loss was not really an issue for me at this point.  He presented me with a plan to partially resection the AN, cut off it's blood supply and, in effect 'gut' it, making it much more vulnerable to radiation.  After a 90-day 'rest', I would undergo FSR (26 seperate sessions) intended to destroy the remaining tumor's DNA and, in effect, kill it.

Long story short: everything went according to plan...the surgery was a resounding success.  The tumor was reduced to approximately 2.5 cm and it's blood supply severed.  I suffered no facial problems.  My balance was a bit shaky but I quickly regained 'serviceable' equilibrium.  I did balance exercises and a lot of walking post-op and now, over 4 years later, my balance is probably about 85% of 'normal' and not an issue for me.  My appetite returned within 48 hours of the initial surgery and I've even managed to retain a healthy weight because, after the loss of appetite phase, I realized that I had been eating portions that were too large and a lot of things that, cumulatively, added pounds...so I changed my eating habits. 

To be more specific in regard to your query about pre-op procedures: I believe each doctor/hospital has their own protocol for AN surgical patients but I underwent a host of tests including a bone density scan, lung tests, heart tests and a second MRI just before the surgery.  I 'passed' all the pre-op tests with no problem.  I assume most healthy folks do.  Post-op is different.  Each AN surgery patient has a slightly different experience.  Generally, you're extremely fatigued the first three days after the operation and just want to sleep and rest.  Well, I did.  Because my surgery was complication-free I cannot address the possibility of how one functions if facial or other issues are present, but others can, and will, I'm sure.  In my case, by Day 3 I was sitting in a chair (a big deal) and by Day 4 I was walking the hallways (on my wife's arm, at first, then solo)) and by Day 5, I was chomping at the bit to be released and get home.  They let me go that day and my recovery proceeded apace.  I estimate that it took approximately two weeks at home to feel relatively normal and two months post-op to feel I had regained full normality.  Actually, a few years post-op, I realized that I felt even better so, in reality, total, 100% recovery (or close to it) is likely measured in months, not weeks.  Again, this is subjective and only one AN patient's experience.  The maddening part of approaching AN surgery is the fact that, unlike some more routine operations, the results can never really be determined beforehand.  In short, there are no guarantees.  Some AN surgery patients do experience complications, occasionally severe and life-altering but most post-op problems are temporary.  I experienced double vision for about 3 days immediately after my surgery but it disappeared and never returned.  This kind of thing is quite common.  However, even with the more troublesome post-op issues, such as facial immobility, there are therapies and operations that can alleviate and sometimes cure the problem.  Headaches can be an issue and are for many but again, not all AN surgical patients.  Just like Jan ('leapyrtwins')), I never experienced headaches before or after my surgery so that problem is not a given.  As I stated at the outset of this overlong post, we're all unique and there is no template for the AN surgery experience.  What's crucial is finding a doctor with lots of successful AN removal experience.  As for your doctor's comment about radiation causing the AN to become cancerous, his information is apparently out of date.  Although the risk exists, it is minimal.  However, many doctors do not like AN patients that are under age 60 to undergo radiation treatment because the risk exists, even if it is almost infinitesimal.  That is your doctor's call - and yours to accept or reject.  However, many of our members have undergone radiation to treat their AN and had great success.  Frankly, had my AN been small enough upon diagnosis, I would probably have chosen radiation over surgery, although I never had that option. 

I'm confident that you'll receive more replies to your very pertinent questions.  They'll probably more concise than my response and I trust they'll all be helpful.

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.

leapyrtwins

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Re: pre-treatment options/concerns
« Reply #8 on: January 14, 2011, 05:12:23 pm »
So why have a surgery now that is going to make me sick, off balance, maybe have facial muscle problems before I have to. Can't I just wait till the tumor is bigger and causing more problems? What is the problem with waiting?  I've read so many other peoples online posts and their tumors were much larger than mine. What are the pros and cons of waiting longer?

Watch and wait is definitely an option - some like Mickey have been W+W for an extended period of time.

I'm just not the type of person who could have reasonably watched & waited.  I'm a certified control freak and once I knew I had a tumor in my head I just wanted it dealt with so I could move along with the rest of my life.  This is precisely one of the reasons I chose surgery.  I just wanted the darn thing out of my head, I wanted to know the "issues" I'd have to deal with, and I wanted to get back to as normal a life as I could.

But that's just me.

The most important thing with W+W is to have your AN monitored periodically through MRIs to determine if it's growing or not.  Most ANs, but not all, are very slow growing and the older you get the slower they seem to grow.  There are exceptions though - I was one of them - which is exactly why you want to keep on top of things.  If your AN should start growing rapidly, if it starts causing you more problems, or your current problems get worse, you should decide on treatment.

To answer the question why people sometimes don't get treatment until their AN is larger than yours - it's because they are unaware they have an AN and when it's discovered it's already large. 

One of the strangest things (in my opinion) about ANs is that very small ANs can cause big symptoms, yet large ANs often cause very small symptoms or none at all.   One of our Forumites, Jon (aka Satman), had an 8 cm AN that he was unaware of until he ended up having to have surgery immediately. 

Other times people have symptoms, but they are misdiagnosed and by the time they are finally sent for an MRI with gadolinium contrast, their AN has grown.

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

kraynok2

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Re: pre-treatment options/concerns
« Reply #9 on: January 15, 2011, 07:38:20 pm »
Welcome to our group!  I was so glad when I found this forum.  It is a tremendous help.  As you can see from the above posters, everyone is different and we really can't tell you what will happen with you.  The above posters have been around here a long time and have excellent information.  I did about 100 hours of research before I picked a doctor.  I wanted to know what might happen during and after the surgery so that if I had any of it happen to me, I would not be shocked and upset.  I have been going to an ENT yearly for a check-up in order to get my allergy serum for weekly shots.  During the last 5 years I started having hearing loss in my left ear and developed tinnitus.  The doctor did one hearing test and said the left ear did not hear as well as the right one.  Then about 3 years ago, he did another test and the left ear was worse with a good part of my hearing gone and speech recognition not so good.  I have asked that doctor every year for the last 5 years if there was a test we could do to find out the problem.  He always said no, it was probably nerve damage that happened to me at one time.  i now know that nerve damage was due to a tumor sitting on the facial nerve and that most doctors would recommend an MRI for single sided hearing loss with tinnitus.  I debated for 2 years to get another opinion.  This fall, September 2010, I finally told my husband I needed to find out if something could be done about my left ear.  I live in West Virginia, so I made an appointment with an ENT at WVU hospitals in Morgantown.  Dr. Wetmore listened to me and looked over the reports from the other doctor and immediately told me it sounded like a benign tumor.  He was shocked that the other doctor did not recommend an MRI.  So we set one up for the following week.  And there it was, the shocker, an acoustic neuroma around 2cm.  I nearly fell off of the chair when I heard it definitely was a tumor.  Dr. Wetmore discussed the 3 options with me and my husband and told us to take our time and do research before making a decision.  He sort of leaned towards the Gammaknife, but said the decision had to be mine.  If I went with surgery, he recommemded the translabrynthime. He set up a consulting appointment with a surgeon he has worked with.  This surgeon only does about 6-12 of this type of surgery a year. In October, I met with Dr. Voelker, after waiting an hour in a frezzing cold room for him.  :(  He did not introduce himself and did not offer any information, only answered the 2 pages of questions I asked.  He was going to do the retrosigmoid surgery.  I had to ask to see the MRI because we had not seen it before.  He did show it to us.  But I was not impressed with him and did not feel comfortable with him going in my head.  So it was back to more research.  I really wanted to go to the House Ear Clinic in California who are leaders in this field, but my husband asked if I could find something a little closer to home.  I found Dr. Chen in Pittsburgh, Pa. who had trained a year at House.  He works with Dr. Aziz, the neurosurgeon.  When we went for a consult, it was as different as night and day than my first consult.   :) They both took tons of time with us, explaining all the options.  Dr. Aziz took an hour showing us a skull (which the first doctor did not do at WVU) and explaining every nerve to us.  We spent about 3 hours with both doctors and I knew they were the ones.  We set up to have the operation which took place November 16, 2010.  They did the translab since my hearing was almost totally gone in order to save the facial nerve.  Before the surgery, my symptoms were the hearing loss, tinnitus, and my left side of my tongue had started to be numb.  Pre-op I had to have a chest x-ray, a physical, blood work, and since heart problems run in my family, a stress test and echo cardiogram with a heat doctor.  The surgery took 7 hours and I was in ICU only that night and part of the next day as they waited for a bed to open up.  They had put a nausea "bandaid" on my neck, so I never was nauseous.  I sat in a chair in ICU and had some breakfast.  I don't remember a lot about ICU except my mouth being sooooooo dry and needing the sponges they gave you to suck on.  In-between, I slept.  Before I went to a regular room, they unhooked everything.  I did not have steroids and did not have pain anywhere.  That first day, the physical therapist had me to walk and try steps.  I was able to do so by myself and did not have any balance problems.  So I was left to myself to get out of bed and go to the bathroom or walk around the hospital.  My husband walked with me when he was there, but I did not need to hold on to him.  I never was dizzy or had eye problems.  I did have slight facial paralysis that the doctors thought would be temporary.  On the House scale for paralysis, 6 would be the worst with no movement.  Mine was a 2.  The surgery was on a Tuesday and I went home on Saturday (a 2 and a half hour trip).  I thought I might have to keep my eyes closed on the drive home, but did not and did fine with the long trip.  But I slept a good 2 hours when I got home!  I've had to do facial exercises and my face is back to normal. After about a week, my left eye did not blink with the right one and I could not wink, nor had tears.  But now, my eye is normal, but still a little dry with no tears, so I use eye drops only when needed and ointment every night.  Things are good and I feel good.  Tuesday, January 18 will be 9 weeks since surgery (I don't know where the time went).  I will be going back to teaching kindergarten that day, mornings only for 2 weeks until I see how tired I get.  Sometimes I think I can do things because I feel good and then the fatigue sets in.  So, you can see, we all have different stories and even the doctors can not predict your outcome. I hardly had any problems, but others had some.  Do what you're doing:  research and ask your questions.  You will know what is best for you.  I did not want radiation and the possibility of the tumor staying there or growing.  I wanted that foreign thing out of my head.  It was the best choice for me.  You'll know what to do.  Sorry this is so long, but I know you asked about all the possiblilities, so I wrote about my experience.  Good luck to you and keep in touch with us.  Sandy
,

dsnyder

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Re: pre-treatment options/concerns
« Reply #10 on: January 16, 2011, 02:18:58 pm »
Thank you so much to everyone who has responded. I really appreciate you posting and going into detail about your post-op issues and how you felt. Reading what you have all gone through and knowing it's coming directly from people who have experienced it not just doctors telling me what to expect has helped to ease my fears.

Kaybo: I am a 51 female who lives in the southern New Jersey area. I am going to Jefferson Hospital in Phila. PA. Dr. Artz is the Otolaryngology and Dr. Evans is the Neurological surgeon.

I do have some good news though. Dr. Artz called me on Friday and told me that after he had time to physically view my last two MRIs he "does not see any concrete evidence of growth at this time to justify surgery." He would like me to wait until July to have a third MRI done for comparison. That is fine with me!  :)  :) So now I'm in the wait and watch mode. Thank you to all for your concern and honesty. I will continue to post as things progress.

Kaybo

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Re: pre-treatment options/concerns
« Reply #11 on: January 16, 2011, 04:51:02 pm »
GREAT news!!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Barb909

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Re: pre-treatment options/concerns
« Reply #12 on: January 16, 2011, 10:22:18 pm »
Hi D,

We almost have twin tumors! Mine showed no growth at the 6 month MRI, so I will do another this June. My doctors (the ones hosting the symposium in Cincinnati) say I don't have to have surgery unless I choose to, and they add that many do choose to get small ones out, and that is absolutely not a wrong or bad option...just not medically necessary at this time. My only symptoms are a little hearing loss, but really big, BIG tinnitus....sometimes really makes me feel crazy. My worry is age - 58, and don't wish to have brain surgery later in life. So...I share the dilemma of surgery or not when the choice is ours to make. I don't remember if you mentioned getting 2nd opinions or not....?

Will you be able to be in Cincinnati in June? I really hope to get a clearer picture of things once there. Although we have the luxury of time and decision, it is very difficult at times. Let me know if you'd care to talk. Hang in there!

Barb
Feb. 2010    4 x 8 x 5mm
June 2011   4.7 x 8.9 x 4.0mm
May 2012    4.5 x 9.1 x 3.9mm
Sept. 2013   5 x 10.1 x 5mm
Feb. 2015     6 x 13 x 5 mm
In IAC near cochlea
Mild hearing loss, tinnitus
W & W, thinking about treatment

cindyj

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Re: pre-treatment options/concerns
« Reply #13 on: January 17, 2011, 08:41:43 am »
Hello and Welcome!  You've been given lots of great info already, but just wanted to say hello and chime in as I am also 51 and my tumor was just about the same size as yours...had my surgery 2 years ago.  Had as near perfect hearing as you can have, had been living w/ tinnitus for about 3 years (thought it was just my bad luck and I learned to live w/ it), had vertigo and/or wonky head for many years, learned to live w/ it also...when my AN was finally discovered, I struggled for months with the decision, as do many, if not most patients w/ these AN's.  Hung out here 24/7, had another MRI, consulted with numerous docs, agonized about what to do - no clear cut, definitive answers...but once I finally did come to my decison, I felt at peace and was pretty calm about it.  You will get to this point also - believe me!  In the meantime, ask away, take a deep breath and know we are all here for you and will help you thru as best we can!

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