ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: Lisa Peele on April 28, 2005, 05:36:11 pm

Title: Hope and Inspiration for the Newly Diagnosed
Post by: Lisa Peele on April 28, 2005, 05:36:11 pm
There is life after an acoustic neuroma!  If you have recently been diagnosed with an AN, or are just beginning to research treatment options, you are probably already aware of the potential risks and complications associated with the various treatments.  Some of what you have heard up to this point may scare you, or make you feel like there is little chance of resuming normal life after an AN.  With excellent medical care, a strong support system, and a positive outlook, you can and will get through this!

Meeting with doctors and searching the internet for options and paths back to normal life after being diagnosed with an AN is something many of us have gone through, too.  There is so much information to sift through, and the prospect of trying to figure out how to get through this can be simply overwhelming.   

While it is important to be aware of some of the things you may be dealing with after treatment, you should also know that many people are treated successfully for ANs, and go on to live happy, normal, productive lives without serious residual issues...and often don't look back, or visit the message boards.   

As members of the AN community, we use this discussion forum to share information and support one another in our common struggles and successes.  This page is meant to pass along encouraging information to other patients who are just beginning the AN journey.

Please post messages of hope and inspiration below...

Please include:

-Your age when diagnosed and treated
-Where you live
-Tumor size
-Specific treatment method (microsurgery--translab., middle fossa, or retrosigmoid/suboccipital, or radiation--GK, FSR, etc.)
-When and where you were treated (including doctors)
-Any other information you feel would be pertinent or helpful to others looking for information on successful outcomes

My own story will follow...
Title: Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
Post by: mlwitte on April 30, 2005, 05:09:57 pm
Thanks for posting this Lisa

I have surgery planned for July and am really looking forward to hearing how folks are doing and recoverying from their events.

Marcus  ;)
Title: An excellent surgical outcome on a monster AN:
Post by: David Wrubel on May 10, 2005, 04:22:00 pm
Since many of you reading this are really scared, looking for information, and trying to make the best decision, let me start with the bottom line, for me:

If I had $5 million or so of spare change, I'd give a lot of it to House. They didn't just save my life...they preserved it. For those of you now facing all the decisions that are part of the AN process, this should be your goal: A Great Outcome. Let nothing, not distance, not cost, not even insurance companies, get in your way. Particularly if you have a large tumor, in my opinion 2 cm or larger, House is the best place to go. There is more individual and institutional experience in this very specialized form of brain surgery at House than there is anywnere else in the US.

Now, my particulars. I had almost no symptoms until I felt strange and dizzy going up and down a ladder. My Connecticutl Otologist (who ironically had been a fellow at House 30 years ago) sent me for an MRI to "eliminate" the possibility of a tumor, which I instantly knew I had. Thinking that the absence of symptoms correlated with the size of the tumor (it doesn't, one of the dozens of weird, counterintuitive things about this condition), within two days I was ready to go down to Johns Hopkins or the Cleveland Clinic for radiosurgery. Then the MRI scans came back.

The AN was huge, about 4.5 cm. Radiosurgery was out, he explained, because the tumor was so large that there was no room for swelling and that the pressure on my brain stem, already significant, would increase to the point where I could die. My head would explode, sort of. Thus began my quest for the best possible surgical outcome, starting locally, expanding to Yale nearby, Mass. General in Boston, Sloane Kettering and Mt. Sinai in NYC, and House in Los Angeles. All but House were relatively close, and all but Yale were out of network, according to my insurance company. But that's another story.

Discussions with doctors at these institutions revealed significant differences. Their personalities were a factor, their surgical approaches varied, and with the exception of House their prognoses were guarded and far less than I was looking for. Some estimated 14-16 hours under anesthesia, and a couple of the surgeons told me in no uncertain terms they would have to sever the facial nerve. One said I'd likely need two surgeries. I sent my scans to House, and the next day Drs. Rick Friedman and Bill Hitselberger called me. Basically, they said, I needed to have this thing out quickly, felt strongly that they could do it without severing the facial nerve, and expressed confidence that my outcome would be quite good. Surgery would take five to six hours, an entire floor of St. Vincent's hospital across the street for the Clinic was devoted to their surgical patients, and the medical staff - not just the surgeons -  had seen every complication and was accustomed to handling any situation.

This was what I had been looking for. From that point on, I never doubted that they'd do the best job possible for me.

Getting there, however, was not easy. Over the next two months, I submitted three formal appeals to my insurance company to allow me to go out of network to House. They were rejected, this after extensive medical research and documented statistics. The people at House were outstanding, sending letters on my behalf and agreeing to be reimbursed by my insurance comapny as if it were a California HMO. But the key was my wife, who out of frustration called the Medical Director of the insurance company and told him that she thought I was going to die. While that wasn't the case, it (or my attorney, cc'd on everyting) got his attention and I got my approval.

The good new was that I had only four days to actually worry about the surgery.

My experience as a patient was outstanding. I believe that my absolute faith in Friedman and Hitselberger helped enormously. Not only did I never once think I might actually die, but I had no doubt that I would be able to resume my life with very few residual effects of the surgery, aside from losing the hearing on my right side. That, I figured, was a small price to pay.

Because the tumor was so large (turned out to be over 5 cm.) and the surgery so long (6 hours, which for House is a long procedure), I was in ICU for three days, then in a room for another five days. I was released, but developed a very small CSF leak that only required that the incision be repacked and reclosed, which Hitselberger thought from the outset might have to be done. He did it the next morning, and a few days later I was released.

Here's something you'll like to hear: There was very little pain, at least relative to what I expected. The nurses were fabulous, follow up care was amazing, and single rooms the norm. The food was decent, but I recommend the first floor cafeteria or some local restaurants for take out. Ask the doctors.

When I left Calfornia, Rick Friedman told me that mine was the largest AN they had removed to that point where the outcome resulted in such a high degree of facial mobility, lack of headaches, almost no balance issues, and no eye problems. Hitselberger wanted to take me to a LA Dodgers game toward the end of my stay, but they were out of town!

The flight home was uneventful, and though I was much more tired than usual for the next three months or so, things were remarkably normal from the beginning. I started driving again two weeks after my return, and a month later attended my first business meeting in New York. That nobody there suspected anything unusual about me was just what the patient ordered!

It's now a little over five years since the surgery, and I can still tell you what I had for breakfast the day after I was released. As if it were yesterday, I remember my first post-hospital bath, a seemingly endles walk down Venice  beach, certain things we bought in LA, and my wheelchair ride through LAX.

What are my deficits? There is some residual numbness in part of the right side of my face, sort of like permanent mild novocaine. I can't kayak (takes an amazing amount of coordination and balance), my basketball career is over (then again, at 50 yrs. old it was anyway), and I do shy away from concerts and really loud clubs, since I only have one ear left.

Which brings me to the biggest problem I have....I miss hearing in stereo. Following conversations in noisy restaurants is difficult, and strategic seating in such places is a must. Again, a small price to pay for what might have been a far less satisfactory outcome.

Please, feel free to contact me with any questions or concerns. I have been in touch with lots of people over the past five years, including others on this forum. When I get an AN message on my machine, it's the first one I respond to. Same with emails. Talk to you soon.

Good luck....DW

Update 4/23/05: Recent MRI showed no tumor regrowth. Fourth year in a row. The radiologist who reads my scans can't get over the quality of the work. He calls the surgery a work of art every time he transmits the results to my internist.
Title: Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
Post by: sallyschindel on May 10, 2005, 09:26:05 pm
I am happy to share my story for anyone who will benefit. 

On March 17, 2004 I woke up with significant hearing loss in my left ear and spent a few weeks trying to "unplug" it with wax removal etc.  I was very lucky to have an annual physical shortly after and a great Dr who sent me right to an ENT who measured about 70% hearing loss and sent me right to an MRI to "rule out tumor which is so rare - 1 in 100,000". 

But the old AN was very clear and they immediately sent me to an otologist in Phoenix that has treated many AN's.  He offered me all the treatment alternatives, leaving the decision enitirely up to me.  The ENT had recommended surgery due to fear of long term effects of radiation (I was 54) and how "new" the Gamma Knife radiosurgery procedure is.  I figured 15 years or so is not new and Phoenix's famed Barrow Neurologic Institute and all the talent there were any easy choice over brain surgery.  I have had NO regrets.  The GK was simple, quick, effective and pretty easy to bounce back from.

My 6 month MRI showed a little shrinkage of my 1.5cm tumor.  6 month hearing test showed no change at all.  Pre-GK, my balance test was really good since apparently my tumor had been growing slowly and not causing me any trouble at all until it hit that stage of impairing the hearing nerve.  Post-GK, the loss of balance has been my most significant change, but it has gotten much better since I've gotten serious about exercise (vestibular exercises, tai chi, walking hills).  I had balance trouble whenever fatigued and had been easily fatigued doing things I'd always done like biking and hiking.  I could balance on a bike but couldn't look to the side without my brain telling me to turn which took me right off the trail.  Driving was scary when looking side to side and getting dizzy.  But practice and patience are paying off big time and I'm getting back to normal.

Tinnitus came soon after the hearing loss and has grown louder over time but I've made friends with it and it doesn't distress me any more.  The noise in restaurants and grocery stores are challenges but I've found it pretty easy to live with.  One thing my AN has brought me is an awareness of how many people live with hearing loss and tinnitus - I never knew that before - a huge number of friends and family.  Real scary at first but it's just not that big of a deal anymore.

Immediately post-GK, I had very weird taste sensations for a couple of weeks that completely resolved themselves.  I had a lot of little shooting pains through the tumor area.  Not headache-like, I call them shooters - they just zing through.  They have come and gone over this past 10 months and I've noticed my balance is off again when they do come.  I think it's changes in the tumor that again get the balance nerves in disequilibium.  That's a good thing.  It's progress.  Every zing I consider to be another tiny shrinking of the tumor - we'll get it checked again with a 12 month MRI in late June.

I agree with others in this group that question why someone chooses surgery over radiation.  I've been to 2 ANA support group meetings in Phoenix and met about 20 people and only 2 of us that chose radiation.  Some say they couldn't tolerate the thought of a tumor in their heads and wanted it out, regardless of risk or recovery time, even sacrificing what hearing they still had in most cases.  I think another reason is the ENT's that promote surgery - mine said that is the most conservative route...get the tumor out.  I much preferred my choice of GK and its out-patient, get right back to work and play, nature.

I'll be happy to answer anyone's questions about my GK and hope to help others in the future make treatment decisions that fit them as well as mine has fitted me.

Here is the link to my pictorial Gamma Knife radiosurgery procedure - done in late June 2004, Phoenix, AZ.

Sally in Prescott, AZ
1.5 cm x .9 cm x .9 cm
Gamma Knife radiosurgery 6-30-04 at age 54
Dr Daspit, Dr Shetter, Dr Speiser
Barrow Neurological Institute
Phoenix, AZ

Title: Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
Post by: rebecca on May 11, 2005, 10:42:36 am

Well, here's my story.  I am a mother of an 8 year old beautiful daughter, wife to a wonderful husband and an attorney.  I was diagnosed in December 2004 with a 3 cm. AN.  It took approximately one year to get the diagnosis.  I have Kaiser insurance company.  I did take matters into my own hands to some extent.  Luckily, my uncle is a surgeon, so I bounced ideas off of him after going on line--specifically, my favorite site is  I had come to the conclusion that because of the unilateral loss of hearing, it could be one of a few quite ugly things--brain stem tumor, clot in main artery leading to stroke, AN, meinier's disease, neurosyphillis(I was pretty sure I didn't have that!)--to which my uncle agreed--and I must say with a surgeon's bedside manner! 

I was referred to ENT immediately after I discovered the loss of hearing and all of my hearing tests were perfect--so the doctors were optimistic and initially diagnosed vertigo--but cautioned that I was not done there and would need to come back every six months for hearing tests.  My GP ordered a CT scan with contrast--but the technician didn't inject the dye (uh oh!).  I'd had CBC and all of the other relevant blood work, etc.  Then ENT ordered a test for mienier's disease--which came out positive.  I was quite relieved, but still felt I needed an MRI, because I'd read where mienier's could be secondary to a tumor.  The doctors felt quite certain that because of my "perfect" hearing -- in the booth anyway--that an AN was highly unlikely, but ordered and MRI in any event.  The MRI came back with a 3cm AN to everyone's surprise.  After that my surgery was scheduled very quickly.  I'd not heard anything about my doctors--Dr. Cueva and Dr. Mastrodemas.  However, the ENT physisian's assistant and my GP had heard wonderful things about them which they shared with me.  Dr. Cueva developed the hearing monitory now commony used in surgeries all over the country where hearing is to be preserved.  Dr. Cueva and Mastrodemas perform all of the AN surgeries for Kaiser Southern California (an area extending from LA to San Diego--this included all county workers--so as you can see they have performed thousands of these surgeries and are well acquainted with and confer regularly with the House surgeons.  If anyone is afraid to have their surgery at Kaiser, I am here to set aside those fears. 

My surgery lasted about 6 hours.  The nursing staff was wonderful.  My stay in the hospital was three days.  I did have some facial paralysis due to swelling of the facial nerve--the nerve was sitting on the tumor much like a "piece of cellophane."  My surgeons explained that because of this, I should prepare myself for temporary facial paralysis.  Facial nerve monitors were used in the surgery and the facial nerve was preserved.  I am recovering nicely and at 4 months out, have almost all of the movement back (80%).  I sort of measure it by the
"new" frown lines that appear in my forehead--darn!  In fact, it sort of looked like I had plastic surgery or a shot of botox on one side of my face - and oddly it is the paralyzed side that looked "more normal."  My husband was very supportive and would say- Honey, use your big eye!  In reality, though, it is a bit disconcerting to lose part of your ability to have a full smile.  But, hey, if that's the worst part, it certainly beats the alternatives, as my uncle is quick to remind me.

The best things about ANs is that they are 99% of the time benign.  They are operable and you don't die from them!  Hooray.  I had a translabyrinthian approach due to the size and location of the tumor.  Also--see emedicine for a description of all approaches and althernatives.  I might also add, be aware -- though most of the tumors are slow growing--not all of them are.  Since I was in a category that was outside the norm, I felt that I wanted the surgery sooner rather than later, not to mention that the size of the tumor was already considered large and taking up the entire cerrabellpontine angle.

I've lost my hearing in the right ear--but in reality--I couldn't hear out of it anyway.

After four months, I am working full time, taking my daughter hither and yon--full time mom, wife attorney (sorry Dr. Laura--but guess what I am my kid's mom and she sure as heck knows it!).  I thank God every day for each breath and I thank God that these very skilled and wonderful physicians, surgeons and staff are available to all of us who encounter this tumor.
Title: Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
Post by: Mary 117 on May 12, 2005, 12:19:29 pm
Thanks to all who have written the above notes. I haven't had surgery yet so all the unknowns still loom large. I have read so many things that go wrong or aren't what people hope for, it is really encouraging to read your stories and it lessens the worry.

Thanks so much for taking time to write thoughts that give hope,
Title: Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
Post by: Lisa Peele on May 12, 2005, 08:55:56 pm
I am so happy to see people sharing positive information about AN treatments!  When I was newly diagnosed, my husband was doing all the research, and had a hard time finding good outcomes for people with cases similar to mine.  He prayed they were out there, and just weren’t on the message boards.   The changes in the ANA website and the introduction of this new Discussion Forum have created a place for a different type of information sharing than on the previous Guestbook.  Along with on-going support for those of us affected by ANs, there is now more specific information on doctors and treatments--and more success stories.  Here’s my own:

Lisa Peele, 35
Dublin, Ohio
4.3 cm X 3.3 cm (right)
Translab., June 14, 2004
House Ear Clinic (L.A.)
Dr. Rick Friedman & Dr. Bill Hitselberger

Symptoms before surgery:  Mild hearing loss in right ear.

Post-surgery:  Complete recovery within 3 months (other than expected hearing loss in affected ear).   No facial paralysis, no CSF leaks, no headaches, no balance issues, no swallowing difficulties, no vision problems or ringing in the ears. 

I was diagnosed at age 34 with a 4.3cm X 3.3 cm acoustic neuroma.   Due to the large size of my tumor, and the fact that it was severely compressing my brainstem, I was told that it needed to be removed right away.  We met with a highly regarded, local neurosurgeon (who sees 10-12 ANs per year) and were told of the risks of AN removal, and how larger tumors are usually associated with an increased chance of complications.  I went into the appointment thinking we would discuss how to save my hearing.  I was sad to learn that after the surgery I would not only be deaf in one ear, but I might also have other serious residual issues, some which could be permanent.  After quick, but extensive research, my husband Chris decided the House Ear Clinic in Los Angeles, CA, was the place for me to have the best chance at a great outcome.  I had surgery just over 2 weeks after I was diagnosed.  I left the hospital in 4 days, and came home a week and a half later.  In a month's time, I went from seeing my life crumble in front of me, to having it back completely as it was.  

I learned about my AN because I was having trouble hearing out of my right ear.  I had no other symptoms.  So all of this was quite a shock… 

I had surgery scheduled locally until Chris began searching for other options.  It was just too much for me to consider at the time, he thought (and it truly was).  After meeting with the neurosurgeon here, he felt strongly that we needed specialists, and that I would have a greater chance at a positive outcome with someone who does this every day.  He actually did all the research, consulted with the doctors at House, scheduled my surgery, made plane and hotel reservations, and then told me he was taking me to California for treatment.  I was blown away.  The thought of it today still brings me to tears.  I am so grateful.

If you’re asking:  �Why are there so many positive posts about The House Ear Clinic?�, “Why are HEC patients so vocal about expressing their feelings on their experience?�, or, “Are any of these posts solicited or encouraged by HEC?�, I’ll try to explain. 

First, HEC does more removals each year than any other facility in the world, so there are a lot of House patients.  But ask any one of the people who are posting here…no one from House asked us to get involved, or to write about our experiences.  I’d guess that others are like me—so pleased with the care I received, that I feel compelled to share it with others traveling the same path.   My experience exceeded any hopes or expectations I had.  When I was first diagnosed, I was told I would be under anesthesia for at least 8 hours, and maybe up to 18 hours.  I should plan on spending anywhere from 5 days to 2 weeks in the hospital, and then plan on physical therapy when I came home.  I was told to expect to lose all my hearing on one side, and very likely half my face as well.  It would take several months to a year to recover from surgery, and I might have issues lingering beyond that.  For about a week, this is what I thought my life would be like after surgery.  And I had accepted it.  

The doctors at House gave me my life back.  You thank someone for a ham sandwich.  How do you show your gratitude when someone saves (and preserves) your life?  I am eternally and profoundly grateful.  I spent 3 ½ hours in surgery, and they were able to get the entire tumor without complications.  I had minimal pain, and was able to leave the hospital in 4 days (feeling tired, but well).  I came home to Ohio 2 weeks after my surgery (able to smile and walk in heels).

The first few weeks I took Tylenol as needed for discomfort.  In the time just after surgery, I experienced a small amount of dizziness and eye strain, a minor balance re-adjustment, and had some facial weakness (from swelling after surgery).  By the time I was a month out, I was just dealing with the fatigue you would expect after major surgery.  Today I am back to normal life as a stay-at-home mom with 4 young children.  I feel great, and have no residual issues from the tumor, or from the surgery to remove it.

I’m coming up on the one-year anniversary of my surgery in June.  I just got results from a follow-up MRI and it was clear.

I don’t have all my hearing on the affected side, but it really doesn’t bother me much.  It’s a small price to pay…

If I could offer one piece of advice, it is to do your research. 

When you look at a model of the brain and you see just where these tumors are located (and what’s in close proximity), you begin to understand the specialization necessary to remove ANs with as little disruption to the surrounding area as possible.  Then you hear words like “cellophane�, “thread�, “thin�, and “stretched� (to describe the nerves in the area), and words like “sticky�, “glued�, or “stuck� (referring to the tumors)—and the delicacy of the situation becomes clear. 

Find the most experienced doctors you can access.  Don’t be afraid of surgery, or traveling for treatment, if either is necessary.  I realize the option I chose is not the only option, and that there are other good doctors/facilities out there.  This was the right one for me given my particular situation. 

I am an “open bookâ€? regarding my experience.  As a part of my recovery, I promised myself that I would continue to help others facing what I did.  I am willing to share any information that would help!  I return all emails about AN patients as soon as I get them, and I am also happy to talk by phone if there are more detailed questions.   Please contact me if you’re looking for information on larger tumors, the translab. approach, HEC, or traveling for treatment.  I have written about my experience and will share with anyone wanting to hear more  :).   

Two-Year Update (June 14, 2006):  It’s been two years to the day since my surgery.  I am happy and healthy and am expecting my fifth child in August.  I’ve read so many stories from others who have been treated and are dealing with the after-effects of surgery or radiation, and I wish I could wave a magic wand and make their troubles go away.  I know we are all unique--as are our tumors, and therefore also are the situations we find ourselves in regarding treatment and recovery.   There just aren't enough good stories told--I know there are lots, but for some reason you don't find them when you get on-line.  I stay active on this board to give hope and encouragement to others facing treatment.  I'm on the board almost daily to see if there are others I can help in any way—but most of my interaction is “behind the scenes�.   I’ve made many friends through this board, and I cherish those relationships.  We are all lucky to have the concern and support of so many...

Envision and expect the best!
Title: Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
Post by: rebecca on May 13, 2005, 01:51:14 pm

There is a posting from a mother of a 14 year old daughter with and AN and the doctors told her her facial paralysis (which she already suffers from) would be worse post surgery.  If you search for this in the site, maybe you could reply to her with some contact information.  I did reply to her to try to contact House--but I don't have any contact information.


I think her posting was under general discussion.
Title: Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
Post by: Lisa Peele on May 13, 2005, 03:44:26 pm
Contact information for House (taken directly from their website,


If you, a family member, or someone you know has been diagnosed with an acoustic neuroma, you may consult with a doctor from the House Ear Clinic team. We will be happy to review the MRI scans and audiogram and speak with you by telephone (we must have a copy of the actual MRI film, reports are not sufficient by themselves).

Send the MRI scans by express delivery to:

House Ear Clinic
Attn: Acoustic Neuroma Website Consultations
2100 W. Third Street, 1st Floor
Los Angeles, CA 90057

You can expect to hear from a House Ear Clinic physician within 24 hours of our receipt of your information. You may also call or FAX a House Ear Clinic physician at:

Telephone: (213) 483-9930
FAX: (213) 484-5900
Title: Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
Post by: alwaysanonymous on May 14, 2005, 04:29:23 pm
im posting my story here because it is easier to find :-D
sometime early in the year 2000 i was diagnosed with a 5cm acoustic neuroma at childrens hospitalin washington dc. at the time i was in the 5th grade(i am 14 now) so i had no idea what this meant. then the doctor told me it was a brain tumor and i would have to have it surgically removed. then i understood. about a month later my dad was diagnosed with a 4cm acoustic neuroma. ours were both left sided and we both lost complete hearing in our left ears after the surgery. we got it done at john's hopkins in baltimore. my dad uses a baha hearing device but i can compensate. he was left with bell's paulsy on his left side of the face and he has to use artificial teears for his eye. fortunately i didnt lose anything drastic but my hearing in that ear. i cant cry in my left eye but that doesn't really matter, it isnt dry. my short term affects were not being able to balance and not being able to swallow. for about 2-3 months after the surgey i had to have a physical therapist and i quickly was able to walk. on the other hand i had to have a ngtube down my nose for about 1-2months. when they were about to make it permanent and give me a stomach tube, i had finally been able to swallow tomato soup and thick liquids like it. i was very lucky. however, the trouble did not end there. i got bacterial meningitis quickly after i was released from the hospital and i had to go back. the doctors inserted a permanent IV into my arm and they sent me home. my mom then had to be my nurse. she took care of the feeding tube and the IV. i missed a few months of school and thankfully everyone was very welcoming and nice to me when i came back. often now i still cough on nuts and rice but nothing sreious. having been through it all just showed me how much i could really handle. i never thought that anything like it could happen to me but it did. i do not regret it at all. alot of times i wear my hair up hoping people see my scar and ask me about it. it makes me very proud. i was lucky too that i was very young when it happened because i healed alot better than my father.
if anyone has any questions, just ask me. or if anyone needs to talk to someone im here because i wish i had known another child who had been through the same thing as me. i felt alone. so thats my story and dont be afraid to ask questions
Title: Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
Post by: Kim on June 13, 2005, 08:49:11 am
Hi; I am 9 months post-op, and I have had a "phenomenal" recovery.  My tumor was 4cm.  I lost hearing in one ear but experienced no facial nerve damage and very little in the way of balance issues.  My surgery lasted 12 hours; I was in the hospital for 4 days.  In 2 weeks I:  walked 4 miles, went back to work part-time, started a ballet class, was driving again.  Everyone says my positive attitude, supportive friends & family, physical condition, and willingness to challenge myself vestibularly all contributed to my great outcome.  I however, would add excellent surgeons to that list.  This experience taught me that life is indeed precious, and we need to vow never to take it for granted. Many people are diagnosed with problems that can't be treated; I am so thankful to be alive.  Let the little stuff go, enjoy everyone and everything.
Title: Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
Post by: stein78 on June 15, 2005, 03:10:51 pm
I posted my story here, I consider my outcome excellent!
Title: Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
Post by: kstanley on September 05, 2005, 11:59:06 am
Hello All!

Its good to see so many posts of good outcomes and I would just like to add my story.

My name is Kara Stanley and I am 19 years old.  In February of 2005, I was diagnosed with a 5 cm AN.  Before I was diagnosed, I had not been experiencing many symptoms.  The thing that made me go to the doctor was that I was getting really bad headaches about once a month for almost a year.  After various meetings with my doctor and dentist, I was finally sent to get an MRI.  That is when the tumor showed up.  I was completely shocked and terrified.  I could not believe that I had a tumor and that it was so large.   

My parents and I met with 3 different teams of neurosurgeons in HJouston where we live.  Although we met with highly trained surgeons, we were not very comfortable with any of them.  Most of them rarely see acoustic neuromas and only do the surgery to remove them about 5-10 times a year.  We were not very comfortable with the fact of having surgery performed by someone who does not do it very often.  My mom came across this website and started reading the posts.  We learned about the House Ear Clinic and decided to call out there.  After speaking with the doctors on the phone, my parents made the decision that we would fly out to Los Angeles for my operation.  We decided to go out to House because the doctors are so specialized with acoustic neuromas and perform the operation a couple times a week.  I had my tumor removed via the trans-lab approach on March 31st by Dr. Friedman and Dr. Schwartz.  My operation lasted longer than expected- 11 hours, but it was only because the doctors were working so hard to save my facial nerve.  The doctors ended up having to leave a tiny piece of tumor to save the facial nerve.  The piece they left was so small and they are hoping that it will die off.  (I just had a 3 month follow up MRI in July and it had not grown and the doctors said everything looked fine)  My operation was on a Thursday and by the following Monday morning I was discharged from the hospital.  By that time, I was up and walking, with help of course!  I had balance problems for the first couple days because they had to remove my balance nerve.  I worked with the physical therapists and did the exercises they gave me.  The thing that bothered me was walking down streets with people walking toward me.  I kept feeling like I was going to bump into people and I felt like my judgement was off.  My parents and I stayed at the Seton Center, which is right next to the hospital.  After a couple days we moved to a hotel in Santa Monica.  We had to stay out in L.A. for a total of 2 weeks before I was able to come back.  While out there I was able to visit a friend at UCLA, go to the Santa Monica pier, walk down Rodeo Drive, and drive around the Beverly Hills/LA area.  I could not believe that I was able to do so much right after having major brain surgery.  It wasn't like we would go out all day, but we would go out for a couple hours and then I would be ready to go back to the hotel and sleep. 

After arriving home in Houston, I was really tired for the first month.  I could not do much and spent most of my time just resting.  I had a little bit of facial weakness or a couple weeks, but it has all gotten better and smile is completely back to normal!  I also lost the hearing on my left side, but it is just something that takes some getting used to.  It is hard to hear in noisy and crowded places like loud restaurants, but I just have to sit myself strategically.  I keep telling myself that if losing my hearing in my left ear is the worst thing thats going to happen to me as a result of the tumor, then its really not that bad!

I am now 5 months post-op and feel pretty much back to normal!  I still get tired easily later in the day, but that is normal after a major operation.  I spent most of the summer resting up and recovering.  I don't have balance problems anymore and like I said my smile is back to normal.  I was even able to take a psychology class at the community college to make up on some of the credits I missed while being away from school for a semester.  Now, I am back at the University of Delaware, where I go to school, and have just finished my first week of classes!  I am so glad to be back at school with all of my friends and have my tumor behind me. 

Looking back on the experience, I can't believe I lived through it.  I am so glad that my parents found out about the House Ear Clinic and that we decided to go out there.  I remember when I woke up from the operation, one of the first things I thought of was I'm so glad we came out here!  My doctors were amazing.  From the moment I met them I knew that we had made the right decision.  They were kind, straightforward, and compassionate.  I knew that they were going to do everything in their power to make sure that I would come out of the operation okay.  Going into the operation, I thought I was going to have problems with facial paralysis since my tumor was so large and stuck on the facial nerve.  My doctors worked so hard and long to save that nerve and I am so grateful to them. 

If there is one piece of advice I could give people it would be to do your research!!  Research is so important and make sure that you find the best doctor for your condition.  In my case with a large AN, the doctors were out at House.  I know it is hard to go to all those doctors appointments and here all the of the bad things that can happen, but it definately pays off in the end.  There were so many times where I wished my mom would have just canceled the appointments, but I'm so glad that she didn't!  Its better to meet with a lot of doctors and find the best one then to meet with one doctor and have a bad outcome. 

I would love to help anyone and share my story with those who have been diagnosed with acoustic neuromas.  Please feel free to email me if you have questions or would like to talk!  It is scary to find out you have an acoustic neuroma.  Just try to stay positive and know that there is life after AN treatment!

-Kara Stanley
Title: Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
Post by: matti on September 05, 2005, 08:31:00 pm
Kara - thank your for writing your story and I am so glad you are feeling back to normal. It sure has been a tough time for you and your family, but I am sure you are all stronger for the experience.

I am 7 years post-op and life is wonderful. I will say, that it is different than it was before, but I have faced every challenge head on. When I was diagnosed in 1998, the internet only seemed to offer horror stories and in fact my doctor told me to stay away from reading them.  I am glad I did just that. When I was well enough, I got on the computer and found very little in the way of positive and uplifting stories. I sat there reading them  and saying to myself, "but you are alive". I ended up posting my story and hoped that it would give someone something positive to hold on to and that life after an AN can be OK!! Shortly after I posted my story, I received several e-mails from people thanking me and 7 years later still keep in touch. I do have some problems as a result of my AN and it is something I work at daily. I believe that facing this with a very positive attitude, as scary as it can be, makes all the difference in the world.

Kara you are truly an inspiration, good luck with college and thanks again for being here to help.

Title: Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
Post by: julieteresa on September 30, 2005, 10:54:53 am
hi lisa -

i wanted to share my story with you, as well as with any people who have just been diagnosed with an acoustic neuroma or are faced with making a decision regarding their options.

here's my story in: i am 36 years old woman living in los angeles.  a year and a half ago i had trouble walking straight, balance, loss of facial movement, etc.  i had an mri on a tuesday and two days later i had a translabrynthe surgery at house ear clinic to remove a 4.5cm (!!!) acoustic neuroma.  i didn't have any time to research about my condidition, my options, various doctors, what an acoustic neuroma is, etc. so i feel truly blessed at how everything unfolded so smoothly for me.

my ear, nose and throat doctor (who diagnosed me) had highly recommended the house ear clinic and dr. slattery. because i live in los angeles, i was able to be there that afternoon. i met with dr. slattery and immediately felt at ease.  he told me that due to the size and and the location of tumor i needed the translabrynthe accproach as soon as possible.  he told me that i would lose hearing permanently in my right ear.  (and at that point i didn't care about the hearing loss because i was so happy that i wasn't going to die!) dr. slattery is the kindest, most patient and brilliant man i have ever met.  he sat with me and explained his treatment as well as my post-treatment care at the house ear clinic.  he answered all of my questions with patience and understanding (which is exactly what i needed after an mri proved that there was a tumor the size of an orange lodged in my head!).

the house ear clinic was so wonderful and accomodating.  sheila (my surgery coordinator) was able to move mountains for me to have my surgery as soon as possible (two days later!) because my tumor was  already pressing on my brain stem.  the strange thing is, even up until the point when i was lying in a gurney, being wheeled into the operating room, i wasn't afraid. i was confident that i was in the right hands and the right place and that i would be okay.

dr. slattery and dr. schwartz (the neurosurgeon who is also kind and a genius!) performed my surgery at st. vincent's hospital (located across the street from the house ear clinic).    while i knew i was going to lose my hearing, i was still concerned about facial movement.  however, the day after the surgery i was already able to move the affected side of my face!  my incredibly skilled doctors spent almost eight hours meticulously and carefully removing the tumor, and then focused on the part of the tumor attached to my facial nerve in an effort to preserve it.  my facial movement kept improving (just as they thought), and i regained nearly 100% of my facial movement a few months after my surgery! 

after the surgery, the hospital took great care of me.  dr. michael stefan is another wonderful doctor at house; he  saw me the day before my surgery to take care of pre-op stuff, and visited me daily at the hospital after my surgery to check my progress and answer any post-op questions.  i was out of the hospital five days later.  the doctors suggest taking it real easy for ten weeks after surgery.  i was tired for a few weeks, and my balance was shaky, but i took daily walks (holding onto my father's shoulders at first, then his elbow, then his hand, and then walking by his side).  those daily walks really helped; i challenged myself to walk a little farther every day.  my vision was also blurred for a week or two after the surgery, so i listened to books on tape or spoke to friends on the telephone. 

now, a year and a half after my surgery, my facial movement is nearly 100% regained, as is my balance.  i do yoga three times a week, run 20 miles a week and i have never felt better.  i like to look at my surgery as a blessing as i have a whole new perspective on life.  i appreciate my family and friends more than ever, and have gained courage to do things that i would have not done before my surgery. 

i just can't say enough wonderful things about the house ear clinic.  dr. slattery is a true angel, and i am forever grateful to him, dr. schwartz and the incredible staff at the house ear clinic!!!
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: Lisa Peele on June 20, 2006, 04:53:25 pm
There have been quite a few positive posts recently regarding treatment outcomes.  If you feel your story would give comfort, hope or encouragement to those seeking options or waiting for treatment, please add it here...
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: littlemissrory on June 20, 2006, 09:08:04 pm
Fantastic idea in starting this page Lisa!

Life after the AN is GREAT!!!

I was a healthy, athletic 32 year old alpine ski coach when I had a host of neurologist issues suddenly kick in after being sick with bronchitis in January of 2004.  After 3 months of frustrating trips to the doctor and neurologist I was told I had a virus in my muscles which was shutting them down...time would heal.  I did have that virus, but when I kept falling over and started getting nystagmus they finally did an MRI and found a rather small AN- 8mm left sided. 

The neurologist told me as I was in the process of moving from Sandpoint Idaho to Seattle Washington...and lucky for me.  I was recommended to a Neurotologist (Dr Mangham, Seattle Ear Clinic) in Seattle that specializes in AN's and low and behold I knew him from skiing.  An amazing surgeon with a great neurosurgeon partner (Dr Timothy Steege)...they arranged their schedule to get me in for Retrosigmoid in May of 2004 so that I could be back on the ski hill by November. 

They saved my hearing, facial and balance nerves!  I was home in 4 days and got in my kayak a month after getting home.  I did great and skied non-stop from November through April of that winter, constantly travelling!  Fantastic outcome, I couldn't have been more pleased.  Dr Mangham and Steege are two of my favorite people...I am so grateful.

Best of luck to all!  There are lots of very positive stories out there!


Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: katmumof3 on June 20, 2006, 11:26:38 pm
Hi guys my name's Katherine, and i live in Melbourne, Australia. I'm a mother to 3 beautiful boys.
I went to see my local Doc due to some 'dizziness' which i later learned was a balance issue, i was sent for a CT-contrast, but they were unable to find my veins, and  i was sent off for a MRI which showed a 2.5cm left side AN.  I was scheduled for retrosigmoid surgery at St Vincent's hospital in Melbourne with DR.Richard Kennedy and his father Jack kennedy as my surgeons.  My surgery was scheduled 6 weeks after diagnosis, which is pretty fast here! lol
My surgery took 8 hours, and i don't really remember much of the next 24 hours, except seeing my mother and my ex-Husband.  I wasn't feeling too great the first few days, but i wasn't 'sick' much either, yay.   The Doc's said they took my balance nerve but they saved the facial and hearing nerves.
After surgery i has a little facial weakness, and i swore i could hear out of my left ear!
I spent 8 days in Hospital, then another 2 weeks in recovery at my in-laws (3 kids doesn't exactly help you're recovery! lol) $ weeks post surgery i had my follow up appointment.  Balance was going really well, facial movement was perfect, and above all my hearing test showed 90% usable hearing, woohoo!!  I'm 7 weeks  post-op now, and everything's NOT back to normal.  My entire way of life has changed, i no longer get up in the morning thinking 'what do i HAVE to do today'  i now say 'what CAN i do today'  I spend more time taking care of myself (something a mother often forgets :)) and i now look at life as a wonderful experience.  And when i get tired and feel down i remind myself that i may have only had another year or 2 to live (so says the Docs) i'm alive!!!  and i thank God every day for giving me a second chance to live my life.   Good luck to all of you facing difficult challanges, be strong, stay positive, tomorrow is another day to enjoy :)
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: Jim Scott on June 21, 2006, 02:34:14 pm

My personal 'AN story' is fairly simple.  I'm now 63 years old and have always enjoyed good health.  No heart problems, back trouble or any of the usual maladies that often affect middle-aged (and older) folks.  Although I don't smoke or drink, I didn't really exercise much and I never made a big effort to eat 'healthy'. O.K., I was 20 pounds overweight.  Other than that, I simply enjoyed the benefit of 'good genes'.  Little did I know what was lurking just inside my skull. (bring up loud, dramatic music).

I slowly - but steadily - lost the hearing in my left ear between the years of 1998 to 2000.  I mistakenly assumed it was a result of exposure to loud music in my youth and, as I was then nearing 60 years old, probably an 'aging thing'.  My primary physician, when I informed him of my one-sided deafness during a routine physical in '03 - referred me to an ENT physician.  I decided not to follow up as I (again, mistakenly) assumed that he would just tell me that I was deaf in my left ear...which I already knew.  It never occurred to me that the cause of my one-sided deafness could be a symptom of a tumor, nor did my doctor suggest this possibility.  I had no other AN-related symptoms, such as dizziness or imbalance problems.  All my routine tests (EKG, blood work) came back 'normal' and didn't set off any alarms for my PCP.  We were both satisfied that my lifelong good health was continuing, despite the annoying one-sided deafness....which I adjusted to and then, decided to simply ignore as everything else seemed to be fine.

In late 2005, I began having intermittent sharp, stabbing pains around my left temple.  Very annoying.  Eventually, my sense of taste, my appetite and my equilibrium were all negatively affected.  Due to my diminished sense of taste, I cut way back on my eating and lost over 30 pounds in six months.  I simply ignored all these symptoms for awhile.  I finally told my wife about my problems (she suspected something was wrong by my slow but steady weight loss and lack of appetite) and 'we' (O.K., 'she') made an appointment with my primary care physician.  He patiently listened to me recite all my symptoms and said that I might have a 'thyroid problem'.  O.K.  Let's find out.  Blood tests done the same day quickly ruled out that possibility.  Thinking I might have a 'sinus problem' my doctor then scheduled an MRI (with contrast) - which showed a 4.5 cm tumor on my left (deaf) side as plain as day.  That evening, I received a (rare) personal phone call fom my physician to give me the news.  He recommended surgery as soon as feasible and explained that my tumor was too large for radiation treatment.  He recommended a local neurosurgeon.  I saw him but was totally unimpressed.  Thus began a 4-week blur of doctor-office visits, neurosurgeon consultations, seemingly endless blood tests, various (expensive) 'scans' - and the feeling that my life was now out of my control and I was just a passenger on a very strange journey that I didn't want to take, as if I had - somehow - gotten on the 'wrong train'.  

After a few consultations with various neurosurgeons that underwhelmed us with their 'expertise', my wife and I finally picked a mature, well-respected local neurosurgeon, Dr. Issac Goodrich.  Dr. Goodrich , a courtly gentleman, is originally from Georgia, and retains a trace of his southern accent.  Most importantly, he's a real AN pro.  Dr. Goodrich has decades of experience removing AN tumors (and high praise from my wife's spinal surgeon).  To perform the necessary surgery.  Dr, Goodrich decided on the suboccipital Retrosigmoid surgical approach, which made sense to me.  Dr. Goodrich scheduled a June 1 (2006) operation date, then pushed it back to May 24th, out of a sense of urgency, based on the size and apparent recent growth of the tumor.  To complicate things, following a routine pre-op CAT-scan, a 'mass' was found on my liver, indicating cancer.  Even though no one used the ' C-word', the implications were clear.  My wife and I received a lot of sad looks from receptionists and nurses that we dealt with at that time.  However, I refused to get depressed - or to panic - because we didn't really know what was going on with this mysterious 'dark spot' on my liver.  Why 'buy' trouble?  My wife was (naturally) worried but remained resolute - and hopeful, as did I.  To my surgeon's obvious regret - but at his request - the original May 24th surgery was canceled and a liver biopsy was immediately scheduled.  That happened on May 25th, 2006  (no fun) and, thank you, God, the 'mass' was found to be a hemangioma.  A benign tumor  - a blood clot, really) and definitely not cancer.  It was basically harmless.  Whew!  Following a family celebration where we all figuratively let out our collective breath, Dr. Goodrich called and happily shared our relief, then re-scheduled my AN removal surgery for Wednesday, June 7th, 2006.  At this point, as much as I still dreaded the idea of surgery and hospitalization, I was becoming anxious to 'get it over with'.  I know Dr. Goodrich was, too. Postponements,, cancer scares and re-scheduling will have that effect on surgeons - as well as their patients.  

I entered the operating room at 7 a.m on Wednesday, June 7th, 2006.  Less than nine hours later, the AN was mostly gone.  Well, 50% of it.  My surgeon intends to use radiation treatment to remove the rest.  Informationally, I was 4 days in the ICU (at over $5,000. per day. + meds (thank goodness for Blue Cross!) and a day on the 'regular' floor (@ $3,000. per day + meds) before being discharged from the hospital within 5 days following my AN surgery.  At this point, all  is well.  My strength is coming back,  I'm working hard on my balance and getting back to 'normal' . My surgeon said that my recovery is in the 'top 5% range' and he seems amazed by that, but nonetheless, pleased.  So am I.  :)

I had prepared as best I could - with much prayer, of course (I'm a lifelong Christian) and by reading everything I could about what was going to happen.  This site was a big help in that regard.  I made it clear to my surgeon that while I had full confidence in him -  negative post-op complications were my real - and biggest fear.  He respected that and brought in a special physician (from out-of-town) to the surgical team to monitor all the facial/cranial nerves to avoid unnecessary trauma and post-op complications.  At this point, some 2+ weeks out, it seems to have worked.  I have no major post-op complications.  The occasional and relatively minor 'dry eye' if I'm tired (a few eyedrops or a lot of 'forced' blinking on my part clear it right up) and a bit of an effort to regain my balance functions (getting better every day) are about all I have to deal with right now.  Well, that - and a perfectly good haircut that was ruined by the necessary shaved spots (for the surgery).   Fortunately, I have a full head of healthy hair that I expect to grow back rapidly, covering the temporary 'bald' spots.  

I'm extremely grateful for an excellent surgeon and the good genes that are allowing me to recuperate quickly and fully.    I know that eventually, except for the one-sided deafness, I will recover from this.  Some folks that experience strokes, etc, can't do that.  The damage is permanent. AN damage is reversible - and we can recover.   I'm lucky.   In a sense, we all are.

I really admire all the folks before me who have gone through this 'AN experience' and kept their sense of proportion and humor.  You are an example for all of us.  Me?  I just want my life back.

Jim   :)

UPDATE:   Radiation treatment was moved back to the second week of September, 2006 on the advice of the radiation oncologist who wants the site of the surgery (internally) to heal completely before radiating it.  I agree.  My  'fractionalized' radiation treatments will begin the week of September 11th and last for 6 weeks (at most).  I have been assured by my physicians (nuerosurgeon and oncology radiation) that some fatigue may occur as a result of the radiation - but not much else.  I trust this prediction will prove correct.  

I'm doing great at this point, 12 + weeks post-op.  I drive everywhere and am doing just about everything I did before the surgery - or before I even knew I had an 'Acoustic Neuroma'.  My balance is quite good - if not yet 100%.  I'm getting there - and I'm way better than I was a few weeks ago.  Besides, everyone I know tells me how 'good' I look.  I love it!  

I also consider myself very blessed and I truly appreciate the information this board has provided me.  I hope my 'AN story' encourages others.  Although we are all different, some of us can have 'good outcomes' following AN surgery, even when we're 'older'.  ;)  Keep your spirits up and don't you dare to allow this challenge to defeat you.  I didn't - and look where I am now!    

J.S.     (9/06/06)
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: BevM on June 25, 2006, 08:06:41 am
I am grateful to find this website and to hear your positive stories.  I am newly dx. 1 week and still don't know the size or location of the tumor.  I am a Kaiser patient in Sonoma County, Calif. near San Francisco.  I have an appointment with a head and neck surgeon on 7/24 but will call daily to see if I can get in on a cancellation.  I was glad to hear the one Kaiser experience was good and wonder if there are more of you out there  that can give some insight into their specialists how to navigate the Kaiser system when you want a second opinion.  I also didn't see any of you reporting any pain symtoms. The first symtom was the feeling of a plugged ear (like swimmers ear), balance,dizziness.  I have had head and neck pain for a number of years but this seems to be different and is behind my ear.  Any thoughts or suggestions about my process from here on will be greatly appreciated.

Thanks for your inspiration.

Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: Mark on June 25, 2006, 10:54:27 am

I live in Northern CA and was on my company's plan with Kaiser when I was diagnosed. Fortunately, I also had a PPO option available and was able to switch out to pursue other treatment options that were best of class instead of "best of kaiser". I believe they still only do AN surgery at the Redwood city facility and the principle guy is Dr. Nutnick who I was not comfortable with at all. If your tumor is less than 3 cm then certainly radiosurgery is an available option, but Kaiser does not have that capability so it you do not have the insurance option to get out of Kaiser, then you will need to push for treatment at a non kaiser facility. Kaiser has contracts for CK and GK at both Stanford and UCSF, so it should not be a problem but you have to push for it. Kaiser is great medical coverage when your healthy, but like many HMO's they lack access to and are slow to embrace the best technologies when you need sophisticated treatment. If you choose surgery, then I suspect you will have to use Nutnick or one of the other Kaiser docs who have experience with AN's but not on a par with local specialists such as Jackler or Roberson , or House ear down in Southern Cal. Again, if you opt for radiosurgery you should be able to get access to Stanford as I know several people who have.

Good luck to you,

Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: marystro on July 03, 2006, 11:35:12 pm
Hi everyone,

When my story first started earlier this year, it was like "swimmer ear" which got better.  Now it's just slight ringing sound on and off the last few weeks.  I finally went to see a ENT a month ago who sent me to an audiologist and declared that I have 25% hearing loss in my left ear.  Then he ordered an MRI last Friday and I just got my MRI result today from him.  Finding: 2.3 AN in my left side.  He faxed me the audiogram and MRI results along with information on House Clinic.  So I called and Dr Slattery called me right back within 1 hour.  I was totally impressed with his prompt response and control of the situation.  He told me to send my MRI film, audiogram and order ABR test Wednesday since tomorrow is July 4.  Now I am discussing with my husband whether I should go with local UCSD Dr Harris or go to House in L.A..   Although we live in San Diego where UCSD is, he prefers some place specialized in this like House.  Is House really the best for AN in the U.S.?

As I searched the web, I am really worried about surgery that could cause permanent hearing and/or facial nerve damage.  But then I also heard that radiation is another option but it may not eradicate AN.  There is also this wait and see.  So many options until I found this great forum and this positive chat.  I guess by staying busy and being optimisitc will help.

BTW, Bev, I used to have Kaiser and nothing but great experience!!!

Keeping faith,
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: dgrummer on July 26, 2006, 08:25:04 am
This is my husband’s story….last July (age 36) while we were on vacation he noticed some numbness on the right side of his face.  A month or so before he had complained that his ear felt stopped up.  Finally in Aug of last year he went to his doctor – who scheduled him for an MRI the next day.  The following day we picked up the MRI film in prep for our consultation with a neurologist the next – that’s when we saw something on the film.  Neither of us knew what it was – but figured it wasn’t good  The following day we say the neurologist who bluntly said – yeah this looks like an AN and they’ll have to do surgery to remove it.  It took us a little while to understand – it’s a brain tumor and that means brain surgery.  He referred us to a local neurosurgeon in Little Rock.  Three days later we saw the neurosurgeon who told us the tumor was about 2.5 CM and pressing on the brain stem.  He had no experience with them and suggested we go to Dallas and meet with a doctor there.  So the Friday before Labor Day we headed to Dallas and consulted with a neurosurgeon there.  He did little to comfort us – but said he could remove it and hopefully there would be little side affects.  On our way home – we received a call from Dr. Brackman at House (I had sent the films a few days earlier).  He was very comforting and made us feel better.  However, my husband did not want to travel to LA – and we weren’t sure our insurance would pay for us to go to House.

So after much prayer – we found out about 2 doctors here in Little Rock who had experience with ANs. Drs Dornhoffer and Krisht at UAMS.  We meet with them and decided to schedule the surgery for after the holiday’s.  Due to other scheduling conflicts – the surgery had to be pushed back till Feb – 2 days after his 37th birthday.

We discussed radiosurgery with every doctor we met with.  Two of them performed both Radiosurgery and microsurgery – so we felt like we got honest opinions.  Not one doctor said radiosurgery was an option for my husband – given the size and location.  So surgery was our only option. 

His surgery lasted 12 hours.  Apparently his skull was ‘extra thick’ and they broke a drill bit trying to get through…but they were able to remove the entire tumor.  Once they removed it – it measured 3.5 CM – so it was larger than first thought.  And it was severely compressing his brain.  Right out of surgery - he could smile - so there was no damage to the facial nerve.  The doctors did an AWSOME job!

He was home in 4 days – and by the 5th day he started walking ½ mile.  He was back at work in 6 weeks and it pretty much completely back to normal.  Other than loosing hearing in his right ear – he is doing everything he was before surgery…working in the yard, running, swimming.  He has no headaches, balance, dry eye or facial issues.

We were very blessed and are so glad this entire thing is behind us.  I pray for anyone who is just facing this – but there are good outcomes. 
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: comfortzone on August 29, 2006, 09:37:50 am
Hi Everyone!

I am in the process of beign diagnosed and am so happy that I found this website! I feel so much better reading your experiences. Prior to last Friday I had never even heard of an Acoustic Neuroma and now it's all I think about. I have just had my second MRI - the first one showed a 7mm tumour and now they are getting a better look. I expect the results of the second MRI later this week or early next.

Thank you for being here and thank you for your excellent information!

Best wishes to you all! 
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: Obita on August 30, 2006, 07:29:35 pm
Hi Corinne:

Welcome to the forum but I'm so sorry you need to be here.  This tumor usually grows slow so you have some time to decide which treatment (if any yet). 

You will find that everyone here is caring and very AN educated.  I think the fact that AN's are uncommon and unknown makes this group that much tighter.  If you need to know anything, post a new topic and you will get tons of replys.

Where do you live? 

You sound pretty calm for just being diagnosed.  Are you ok?  I was pretty freaked out when I found out I had an AN.

I had surgery two years ago and other than being deaf in one ear I am just fine.

Best of luck with your research. If you need anything, just post or send an email.

Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: FranDS on August 31, 2006, 04:36:11 pm
Welcome Corrine!

I live in SE Florida was diagnosed in May with a 7mm AN and have decided to wait and watch and, when necessary, treat it with CK (cyberknife radiation).  I first noticed a problem when I came out of the shower one Saturday a week before Easter and could not hear in my right ear.  There was no pain; just a fullness in the ear and some tinnitis.  I couldn't use that ear for answering the phone (very far-away and tinny, robotic sounding when I tried).  In the first few weeks, I also had some balance issues, but I think this was because of the sudden loss.

Thinking it was either water in the ear or wax, I tried home remedies for a week.  When that didn't work, I went to my primary physician to get my ears irrigated, thinking wax was blocking the sound.  I went home and waited another week.  When it didn't clear up, I went back to my physician who saw nothing noticeable in the ear (i.e.,infection) and recommended that I go to an ENT.

The ENT gave me an audiogrm which showed that I could discriminate words at only about a 28% rate.   He indicated I had sudden sensorineural hearing loss, which is cause by anything and nothing, but an MRI was in order.  (I think the look of the graph indicated something to him, since ANs with hearing loss have a specific look, from what I understand.)  Before I went for the MRI, I did research on the internet regarding this phenomena and it was a little bit scary!  The MRI came back showing an AN in the 8th cranial nerve measureing 7 x 4.6 x 3.6mm. Tje ENT recommended immediate surgery throught U of Miami.   My initial response was nausea, and I was scared.

I immediately got on the Internet and found ANA and this discussion forum - a wonderful group of people. I did not proceed to surgery even though my ENT thought I should. Because it was tiny, slow growing, and benign, I knew I had some time to think about what I wanted to do and didn't need to rush into anything  Through this group, I learned about the Cyberknife Society website (  and discovered a treatment that didn't scare me as much as surgery.  As the weeks went on, reading and participating in the group discussions, I must have changed my mind about treatment at least a dozen times.  I finally decided to get a consult with the CK organization in my area.

I met with Dr. Spunberg who is an active participant on the CK discussion forum and liked him immediately.  He discussed all the options, including surgery and GK, and recommended I see another ENT or a neurosurgeon.  I went to a NS who gave me a wonderful exam, was knowledgeable about ANs, discussed all the options, and indicated that he thought CK would be an excellent treatment in my case.  I was happy about this, but asked if he thought I could wait, since I'm living fine with partial hearing and have not had other issues except for tinnitus.  He indicated that watching and waiting woudl be fine in my case,  but that I should go for another MRI and an audiogram to see if the size increased or my hearing worsened, which I will do in October.  He indicated that these results would indicate I should proceed with the treatment of choice.

I am fine with waiting and I'm hoping that it'll be years before I have to do anything.  In the mean time, I am still staying connected with both discussion forums because the people are not only supportive but can lift my spirits with their zaniness.  There is not enough good things I can say about our group.

My recommendation to any newly diagnosed:  Research and learn all you can through reliable websites (Standford, House, Barrows, etc.), partiipate in this discussion forum, get as many opinions from different doctors as you can, ask questions, get answers, make a decision, and stick with it.  And, more importantly, know that you are not alone and that you will get the support and encouragement you need from your fellow AN-ers.
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: ppearl214 on September 02, 2006, 06:40:04 pm
there is nothing I can add here except to say that each and every one of you are so inspirational, unique in your AN journey and so thankful you all are here. :)

Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: hollyjo on September 03, 2006, 11:26:01 pm

Sadly I suddenly find myself a member of the AN community - just days ago I was diagnosed with an AN, right side, and I'm not quite certain how large it is (I spoke with my PCP but have not yet seen the neuro).  I guess I'm glad to have an explanation for the vertigo and hearing loss (I suddenly lost my hearing in my right ear and it gradually returned, but I believe it is still somewhat diminished), but I'm not looking forward to what is to come.  With God's help and grace, and the support of my family and friends, I expect to get through it, but I'd prefer to bypass the experience altogether.  :(

I have an appointment to see Dr. Arriaga at Allegheney General in Pittsburgh, PA.  He is technically a neuro-oto guy - some sort of sub-speciality, perhaps?  I have no idea if this guy is good or not and I don't know how to find out, really - except to ask questions and hope the answers make sense to me.  Has anyone here ever heard of him? 

I am coping pretty well - I had a bad day today (headaches all day).  My doc says the AN isn't causing the headaches but I have them nearly everyday, and they are exhausting.  I hope they're just due to stress.

I am grateful for the stories and positive information contained in the posts on this forum - it does give me hope.  You always expect your MRI findings to be normal - your doc says your symptoms are "probably nothing" so it's a shock when they turn out to be something indeed. 

I just want to know what to expect.  I know from the little bit of reading I have done that there is no one-size-fits-all AN experience - everyone is different.  I'm trying to stay away from the crazy websites and read responsibly-written articles on the subject.  I think I'll stick pretty close to this forum, if y'all don't mind.

Thanks for the uplifting stories.

God bless.


Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: Larry on September 04, 2006, 12:38:45 am
Corrine and Holy,

Important that you provide us with as much detail as possible regarding your AN's - size, whether you have headaches etc so we can focus you on unbiased opinion regarding treatment or non treatment.

You will also find this forum a site to vent any anger or fruntration (we have all gone through it).

keep us posted and we can offer you some pretty good advice.


Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: Kathleen_Mc on September 04, 2006, 03:11:59 am
Holly: sorry to welcome you to the "world of acoustic neuroma's" and as I have said to many others who's doctor's have told them it's not the tumor causing thier headaches........BULL! My main complaint for at least four years before my orginal tumor was found was that of severe headaches, if my compaints of such had not been dismissed my tumor would have been found sooner and possibly I would have faired better on this end of the surgery. Doctor's who say AN's don't cause headaches need to try one on for themselves.
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: ppearl214 on September 04, 2006, 07:57:38 am
Holly, you have come to the right place for a wealth of information, a terrific source of hugs, shoulders and on occassion, giggles.  Know that we are all here to help you through each step you take during this AN journey.

This thread is filled with wonderful inspriation... and know that you can take inner peace and strength from all of us... just as all of us have leaned on each other. 

We're here for you.

Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: comfortzone on September 05, 2006, 08:42:54 am
You people are amazing! So much support and information.

Yes - I was definitely freaking out initially! I have now decided that I need to be healthy and positive in order to be strong and handle this on all levels. It's not everyday that you find out you need brain surgery and my initial reaction was to man the panic stations!
After some reading and great stories shared here I see that I will survive, things are just different than they were before and that's ok with me.

I do have symptoms that I didn't undertsand - after being diagnosed they make sense. I have fullness in the ear, tinnitus which is becoming constant, occasional vertigo and a bit of a nauseated feeling in general. I do find that I get headaches, sometimes they are all over and I think those ones are stress related as my whole scalp gets very tight. I do get headaches or pain on the AN side, usually sharp and sudden but it seems to pass, sometimes I clutch my head for second...anyone else get that?

Symptoms are a big part of what I have questions about...yesterday I was driving and had a sudden headache along with very strange burning sensations and vertigo. I think it may have been caused by sun beating down on my head and the light flashing throught the trees. It was very scary but once the sunroof was closed and the sunlight blocked out I felt much better. I was on the verge of pulling over but then I was ok. Does this kind of stuff happen?? I travel alot for work and am concerned about something happening when I am out on the road alone. Do your symptoms ever send you to emergency or do you just ride them out because you know what the cause is? I don't know how to judge...

I have also found that napping makes me feel a lot better. If I have a little rest the tinnitus seems to decrease and I just feel refreshed. Do you guys find this as well? I will not complain if I have a good reason to have a nap!

I had a second MRI a week and a half ago so that will tell me more about the tumour, I'm just waiting for the results. The first scan showed a 7mm tumour but no other dimensions, I hope it was 7mm at it's largest point! I am in Vancouver Canada and have found an AN Association up here too so I am checking both boards for info and found some stuff about treatment options locally.

Thanks for beign here and I hope everyone's having a good day today!
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: hollyjo on September 05, 2006, 11:21:15 am
I concur - this site seems to be manned by people with considerable knowledge - a relief, after some of what I have read.  I want to also say thank you for the warm welcome.   :) 

My symptoms are intermittent at this point - some vertigo and dizziness, headaches (I'm not prone to headaches and these seem to all be on the right side of my head, the side where the AN is) and some hearing loss - I also get "strange" feelings from time to time and I ALSO wondered about the "flashing" effect of the sun through the trees.  It's hard to describe - almost like a tingling but then again it isn't.  I almost pulled over once or twice - afraid I was having an aura and might start seizing.  After a moment or two the strange feelings went away.  Are seizures ever associated with AN?  I find that wearing sunglasses also helps.



Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: tatianne on September 05, 2006, 11:33:41 am
welcome corinne and holy....
im new here as well and i have received a lot of help and understanding from the members on this board, i know that you will too.
Corinne im also from Canada, Montreal to be exact.
My AN is 8mm and we share most of the same symptoms, including the scalp pain thing.
Please let me know what happens with your second MRI and contact me anytime, i would like to exchange thoughts with.
In the mean time my prayers and thoughts are with you, Apparently( according to everyone on this board) we will be OK, and i trust these guys.
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: Obita on September 05, 2006, 03:08:42 pm
Hello new ones:

I ignored two episodes while driving before I was diagnosed.  Both times (about 6 months apart) I got the whirlys and thought:  What the hell was that.  The feeling was gone in 5 seconds.  Those were my 3rd and 4th red flags.  My 1st was tinnitus which I ignored and the 2nd was when I was goofing around at work and tried to dance like the go go girls of the 70's..........I almost fell over I was so dizzy.  I thought to myself,  don't do that again.  You are too old.  5th red flag, 5 days of the whirlys, vomiting, thought I had a bad flu etc....went to urgent care.  The Dr. there gave me some Dramamine, mentioned my PCP might want to do a MRI to see if there is a tumor.  I thought yeah right......its not a tumor......then my PCP treated me for a inner ear virus for two months.  Then my orthopedic surgeon told me to get to the bottom of the ear thing before my first total hip. Finally my PCP listened to me as I told him what my ortho said about my complaint re:  fullness and something is just not quite right - off to the ENT, hearing test (bad and didn't even know it) and the MRI was ordered.

I have never had a headache.  Not even in the days after surgery.

Two and a half years after the MRI, I am tumorless, deaf in the left and doing great.

Best of luck to you both, Kathy

Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: Larry on September 05, 2006, 05:22:17 pm
Kathy, thats great news.

For the other newbies, the so called experts say that the AN doesn't cause headaches but many of us on this site are not in total agreement with that. personally, I never had a headache in my life prior to surgery and have had them (nasties) since and that's approaching 4 years now. Having had middle fossa surgery, I am NOT and advocate for surgery due to the trauma I have gone through. My AN has also grown back - i will be attacking it with radiation treatment when I need to.

regarding other symptoms, tinnitus is a reflection of hearing loss and from what I understand, the more hearing loss you have, the worse the tinnitus. I am virtually deaf in my AN ear and have very loud tinnitus but I've got used to that and when my mind is distracted, it's not really a major issue for me.

The other symptoms you have both described tell me that your AN's might be pressing on nerves and hopefully not the brain stem (MRI will tell you) Don't panick and don't get stressed.

Oh, whatver hearing loss you might have now, regardless of the treatment, will not be recovered. That is one of the major decisions you need to make. Your AN's are small right now and watch and wait is probably appropriate but bear in mind that if your symptoms get worse, you may need to take some action.

Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: comfortzone on September 05, 2006, 06:34:07 pm
Great stuff - I am so glad I am not alone and wondering what is wrong with me. I've had the "whirlies" a few times now, it's good to have a name to go along with the feeling. Another thing that I never knew was that going deaf would be loud! I am a music lover and have found that listening to music seems to make the ringing less noticeable. It has to be the right kind of music though ;) - it can go the other way too!
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: ppearl214 on September 06, 2006, 06:31:20 am
So many newbies, so many stories, experiences, thoughts and huggles to be shared with you all.  *waves hello to all the neighbors north of the border*

You all have so many symptoms, so many anxieties, so many questions.  Know that many of us out here have chosen many routes of treatments.  Many of you note small growths, so the options are there for you.  All I can share is... take a deep breath... a very deep breath.  Read here as much as you can tolerate without feeling overwhelmed.  Know that this has affected us in so many different ways, but remember one very important thing please.... many of us that are "posties" (post-treatment) recognize that life certainly goes on.    Some with temporary after affects, some with permanent after affects BUT, we are able to move along. 

Know one most important thing... we do know what it is to be in these shoes, to feel the anxiety, to feel the ups and downs of this AN journey.  But, most of all, know that we are here for you.... just as you are here for us. :)

Hang in there.... through this journey, we remain dedicated to each other (as you will see in other posts).  And we are dedicated to help you get through this process as well.

BTW, drinks are being served on the Sun Deck.. they're watered down but up on the Sun Deck, the sun does shine on all of us! :)

Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: tatianne on September 06, 2006, 08:57:30 am
thank you phil,
it is very difficult being in these shoes right now, as im sure you know.....
im leaning very much towards GK right now, especially since my AN is so small, i feel
like the chances for a good outcome are high.
Ive only lost maybe half of my hearing in that ear, I would like to keep what i have and avoid any
facial problems if I can.
Thank you for your words of encouragemetn to us newbies.
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: Lisa Peele on September 06, 2006, 08:59:15 am
All I can share is... take a deep breath... a very deep breath.  Read here as much as you can tolerate without feeling overwhelmed.  Know that this has affected us in so many different ways, but remember one very important thing please.... many of us that are "posties" (post-treatment) recognize that life certainly goes on.    Some with temporary after affects, some with permanent after affects BUT, we are able to move along. 

So well said, Phyl.  I am a firm believer that (a) we are never given more than we can handle, and (b) we don't truly know what we can handle until it's been given to us!  We all have so much strength and grit within that--when untapped--is unknown.  Going through the AN diagnosis/treatment (and making it through, no matter how) shows that we are tough, we are resilient, we are blessed.

I've had my fair share of difficult experiences in the last 10 years and what I've learned is that it's all in your perspective...if you feel like a victim, you won't make it through the tough stuff intact.  You will be paralyzed at times by the fear and anxiety that go along with trauma.  If you (a) accept that bad things will happen, but (b) choose to see the blessings within the challenges--and embrace them--then you will rise above all the pain...and you will find peace.

When asked by a reporter:"What, in your opinion is the most important question facing humanity today?" Albert Einstein replied, "I think the most important question facing humanity is, 'Is the universe a friendly place?' This is the first and most basic question all people must answer for themselves."

If we envision the universe as inherently friendly, we are more apt to look for the great things that happen in times of struggle.  We are more open to the subtle things that occur in daily life--whether things are going great or not great at all--and can see positive undercurrents everywhere...even in the worst of times...
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: krbonner on September 06, 2006, 09:20:59 am
I've had my fair share of difficult experiences in the last 10 years and what I've learned is that it's all in your perspective...if you feel like a victim, you won't make it through the tough stuff intact.  You will be paralyzed at times by the fear and anxiety that go along with trauma.  If you (a) accept that bad things will happen, but (b) choose to see the blessings within the challenges--and embrace them--then you will rise above all the pain...and you will find peace.

Beautifully written, Lisa.  Just this morning, I found another (small) positive in all this - and I do keep looking for them.  I volunteer at a local hospital, which requires an annual TB test.  With proof of a chest xray, however, you get out of the TB test for 7 years.  And, as it so happens, I'll have a chest xray on Friday as part of my pre-op appts.  So, no TB tests for the next 7 years!  Woo-hoo!

It's small, I know, but I always take what I can get.   :)

Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: ppearl214 on September 06, 2006, 09:38:59 am

You're welcome.  I have to say this... *watches peanut gallery covers their ears*....... I know many of us have learned life is all too short.  There are inconveniences in life, some affecting daily living, some not.  For me, I only let them affect me if I let them.  I can choose to either let them interfere with my daily quality of life... or, I can choose to "deal" with what is going on, never forgeting and move along.  Yes, I have lost some hearing. Yes, my balance is off.  Yes, I have many other post-treatment issues (as well as other major medical issues) but... and a big BUTT :D here....I have my inner peace. I know in my heart that I have made the best possible decisions for me and my overall well-being.  I can learn to deal with the "inconvenience" of hearing loss, as... I still have my other ear.  I can deal with the balance issues... as... I am still able to walk, even though my cane is now my permanent 3rd leg.  I can deal with the tinnitus... as... it reminds me that my body likes to talk back to me on occassion to let me know it's pissed but that I can endure.

T, regardless of what treatment option you choose (and GK is a terrific option, if that is what you decide), know that you can deal with all that is going on and what will come your way.... and if you lose a little hearing, that's ok.  If you get some facial numbness, hey, that's ok.   To me, regardless if temp or perm outcomes... we are all here.  We are here for each other. We carry the torch for those newbies that come along, just as you will for future AN patients.  You and all others that are newly diagnosis will learn that yeah... this affects us... but only as much as we let it.

Hang in there T... you're going to be fine! :)

sorry all... I OD'd on coffee this am! :D


P.S.  Lisa, thank you.  I couldn't agree with you any more than you stated. Well stated! :)

thank you phil,
it is very difficult being in these shoes right now, as im sure you know.....
im leaning very much towards GK right now, especially since my AN is so small, i feel
like the chances for a good outcome are high.
Ive only lost maybe half of my hearing in that ear, I would like to keep what i have and avoid any
facial problems if I can.
Thank you for your words of encouragemetn to us newbies.
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: Gennysmom on September 07, 2006, 02:53:42 pm
So well said, Phyl.  I am a firm believer that (a) we are never given more than we can handle, and (b) we don't truly know what we can handle until it's been given to us!  We all have so much strength and grit within that--when untapped--is unknown.  Going through the AN diagnosis/treatment (and making it through, no matter how) shows that we are tough, we are resilient, we are blessed. 

Well said Lisa!!!  I still can't believe I'm 2 months out and feel as good as I do!  There are some moments in the day I even forget I'm still recovering from some facial paralysis that's taking it's time in improving.  That's because I know it's there but I try not to dwell on it....I find myself seeing other health issues out there and constantly saying, "well, I'm sure glad it wasn't THAT", more often than wishing I had some lesser issue.  And, silly as it sounds, I'm glad I'm a surgical postie finally, I'm glad to have the thing out and be able to describe to newbies what it was like, to be over the unknown.  I truly believe that knowledge is power and the knowledge, encouragement, and friendship I found here makes this journey so much easier....don't believe those darn Doctors out there that try to keep patients away from our site by saying the only people that are on here are ones with's just not true!!  There's a little bit of everything here and it's helped me immensely!!
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: Lisa Peele on December 07, 2006, 03:03:33 pm
I am thrilled to see so many good outcomes!  If you've recently had treatment and want to add your story here...please do!
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: krbonner on December 07, 2006, 06:39:41 pm
Great idea bumping this up again!  I'm thrilled to be able to add my story.  In many ways, I feel guilty posting it - my outcome has been so amazingly good, and I know there are some that have lingering complications (major and minor).  I just don't want anyone to think I'm "gloating" - I just want the new folks to know they aren't doomed to horrible consequences!


I had translab done Sept 13, 2006 (12 weeks ago).  The surgery was 11.5 hours and (according to the surgeon's notes) quite laborious.  His notes talk about debulking the tumor in smaller and smaller and smaller pieces b/c he couldn't actually see my facial nerve.  But in the end, he was very confident that my AN is completely gone.  I was in ICU 24 hours and in the hospital all of 5 days.  I don't remember a lot of the hospital, but I wasn't nauseated, or dizzy, or in all that much pain (except for one 3 hour period 2 days post-op).  Within 48 hours I was walking on my own, albeit slowly (as long as I didn't move or turn suddenly).

Aside from 2 days of double vision immediately post-op, I've had none of the typical complications of AN surgery.  No dry eye, no facial numbness or palsy, no taste changes, no vertigo or balance issues, no fatigue, no ongoing headaches (I did have mild ones for about 4-5 weeks post-op, managed with Advil).  I am deaf on that side (a known outcome of translab surgery), but I was pre-op anyway.  In many ways, I actually feel better than I did for the six months before the surgery - I have more energy, am not tired as much, and I'm not tripping on words the way I was over the summer.  (I'd blamed all that on my kids - who knew!)

I do have one lingering complication - numbness in my left hand from a pressure bruise on my left funny bone sustained during the surgery.  Apparently, that elbow wasn't padded appropriately and not moving (not even tiny twitches!) for almost 12 hours caused a deep bruise with nerve damage.  I still don't know if that will ever resolve - I need to follow up with a neurologist.

Seriously, aside from the deafness (which was there anyway) you'd never know I had my skull opened just three months ago for a long, complicated surgery.  I truly feel so blessed.  And it's good to know that when everything lines up just the way it should, and you have a lot of luck (and pirate socks!!!) thrown in, it can all work out really well.

Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: ANdroid on January 15, 2007, 06:22:59 pm
Hi; here is one I'd like to throw out to the experienced members of our group. I have been suffering from vertigo and odd head pain [tightness in the forehead on AN side and wieerd scalp pain like someone was pulling my hair on the AN side]. The neurologist attributed this to my head injury following a faint and collision with the bathroom sink, wall, and floor. Could all of these things, including the faint, possibly be from the AN?
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: Obita on January 15, 2007, 07:31:20 pm
I do not know the answer to that one ANdroid.  I did not feel anything like that.

Anyone else?
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: nancyann on January 16, 2007, 07:28:35 am
Nope, hadn't had any problems like those. 
Does sound like colliding with the sink, wall and floor could do it though.
Jeez louise !!!
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: Windsong on January 16, 2007, 09:49:50 am
I get "faint" almost passing out moments now and then. I'm trying to find out why too. I have some heart issues though.

Nancy ann, that's a nice pic. You look like someone i knew out west up in here in the great white north quite some time ago. Did you ever live there? Could it possiby be you? If it is, she was a wonderful person lol...

Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: nancyann on January 16, 2007, 01:13:31 pm
Hi Windsong: I e-mailed you back, but me and computers, well....
I lived up north for 5 years, but in Maine, a little town called Amherst,
about 30 miles east of Bangor.
I've got one of those faces that remind people of someone else.....
(NO ONE EVER WANTS ME !!!!!  lol)
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: Lisa Peele on February 05, 2007, 01:48:04 pm
WOW, this thread has been viewed 5,000 times!  If even one person who is struggling with a new diagnosis has been comforted by the stories here,  I would be incredibly happy :).  Thank you to all who have shared their stories and have given help and hope to others in need. 

Please, if you haven't written yet, and have had a positive treatment experience or outcome, take a few minutes to tell others about it.  If you can offer support and information, or are willing to be contacted by newly diagnosed patients or their families...write a note here.  PAY IT FORWARD...

Wishing you all peace & happiness,

Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: Boppie on February 05, 2007, 03:51:37 pm
Hello Newbies,
I am posting to add encouragement to "maturing" folks who might be faced with an AN situation.  I chose translab because I wanted the "uninvited guest" out of my head, and hopefully permanently.  I knew the risks and benfits of both surgery and radiation.  I went with translab...had only 65% of my hearing left on the AN side pre-op.  my surgery was about 10 hours long, spent 24 hours in ICU, and went home easily on the fifth morning.  At home I develped "late onset facial numbness" that cleared up by 10 weeks.  I recovered my balance quickly was and back to routine at 3 months post op.   Aside from some tongue and taste issues that hung on for another 5 months, I had nothing to complain about.  I am a happy, still healthy Grandma, and fill my days doing everything I did pre-op.  Actually I take fewer naps now than I took pre op.  But, in South Texas a siesta always refreshes.  :D  I have been posting here since October 2005.  Write any time, if I can help you out.
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: LarryS on February 13, 2007, 08:56:00 pm
I had worked for the railroad for 35 years and always had a yearly physical and audiology testing with my job. I was on the verge of being able to retire. In April, 2004, I started to notice that I could not hear as well with my left ear, thinking it was from my job or that I was just tired. In April, 2004, my family physician sent me to an ENT specialist who did a battery of tests and sent me for a MRI scan. While having the MRI scan, I passed out but attributed this more to the anxiety of having the test than the actual test. Anyway, I found myself being taken to the nearest Emergency Room by EMS. While in the ER, I had a CT scan and in a few minutes, a doctor walked in and said, "Oh, you know you have a brain tumor?" That is how I found out about this AN.

From the ENT physician, I was referred to Dr. Joseph Chang, an ENT physician in Houston. He told me that the tumor was slow-growing and that the options were surgery or Gamma Knife. He referred me to Dr. Volmer who did the GK on June 30, 2004. I went in at 6:30 and had a metal cage bolted to my skull. Finally at 2:30 p.m., I received my GK treatment. There had only been two patients ahead of me and my treatment was over within minutes. Anyway, they were going to send me home despite my asking them to keep me overnight as I was getting nauseated, and I lived 250 miles from Houston. By the time I got half way home, I started vomiting. I spent the next three days in the local hospital too weak to do anything. When I got home, I could barely get from the bed to the recliner for weeks. I had facial tingling, could not close my eye, moderate to severe headaches, and finally my local physician started me on Neurontin which did help with pain. It took until November, 2004, for my symptoms to minimize. I lost my sense of taste for awhile, had ringing in the ears, and had completely lost the hearing on the left side. I had drooling from the left side of my mouth. It was difficult for me to swallow and I lost over 30 lbs. All the while, they told me these symptoms were not from the GK.

Later on, Dr. Mehmet Alp came on the scene. He is a surgeon with expertise in these types of tumors. We took a watch and wait type approach, having MRI scans every six months, until he told me that the tumor was growing and needed to be removed within a year. On November 06, 2006, he removed 80% of the tumor. It was a rather large tumor and had a tail that was bulging into my brain stem. With every turn of my head, it bulged a little farther and one day I would have dropped and that would have been it for me. My surgery was 8-1/2 hours long, not the 15 that I had been prepared for. They took fat from my abdomen and placed it in the hole where the tumor had been. I was up and walking around the day after surgery. Not just a few steps, but the entire length of the hallway with a couple of stair steps. Now that my hair has grown out, you cannot see the large C scar that is behind my left ear.

My recovery from the surgery was nothing compared to what I experienced after having the GK. I spent one night in ICU and my family was able to visit me every two hours. Dr. Alp and his physician's assistant, Mike, were very good at keeping my family informed. The next day I was moved to the NICU so they could watch me on telemetry and on Friday I was moved to a postop floor that was more quiet and I got a good night's sleep. I was discharged on Saturday.

Within two weeks after surgery, I was back to driving. I still have a little difficulty closing my left eye and my face is a little numb. My throat had been sore but this was from the anesthesiologist using too large a tube during my surgery. I am pretty much back to normal except for these little symptoms. I am back to driving and playing with my grandkids. I am off all the medications I was taking before the surgery.

I am just so glad that I went ahead with the surgery. By the way, both Dr. Chang and Dr. Alp stated that the symptoms I had before were caused by the Gamma Knife procedure and not by the tumor itself. Of course, everybody is different and it all depends on the size and location of your tumor.

When we all received this diagnosis, we were all pretty scared. I tried to read everything I could find on the internet and then found this site which helped the most.  Just place your faith in God and he will carry you through all of this.

Larry in Texas, age 60. 
Doctors were Dr. Joseph Chang, ENT and skull based surgery,  and Dr. Mehmet Alp, neurosurgeon.
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: jerseygirl on February 13, 2007, 09:10:04 pm

Thank you for sharing your story because it illustrates that ANY form of treatment can have serious side effects. After surgery, you know exacly where you stand but it is not so clear after radiation treatment because the side effects can be attributed to something else or can occur much later. We can't see, smell or taste radiation but nevertheless have to remember that it can be just as damaging as any surgical tool.

Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: LarryS on February 14, 2007, 05:46:28 pm
I had one doctor tell me that some of my symptoms were not from the tumor. The last doctor told me that all of the symptoms certainly could be from the tumor. I would think that the vertigo could be from the tumor. I had something like spasms in my face. One doctor called them fasciculations. Later on I had trigeminal neuralgia which is some of the worst pain known to man. These were all controlled with Neurontin 300 mg. Ask your doctor about it.
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: Lisa Peele on July 12, 2007, 06:24:28 am
Hi all!  I'm back on the board more regularly again after the birth of my 5th child a year ago.  As some of you know, my daughter Bridget was born with Down syndrome and was in the hospital for a month right after she was born.  Today, she is happy and healthy we've had a great first year with her.  She is amazing!  I also recently celebrated the third anniversary of my surgery, which is why I am posting here.  A recent follow-up MRI was completely enhancement of any kind.  Life is as good as ever, and I am still just as interested in helping others dealing with AN.  If you also have a "good news" story to share, please post it here...I know there are lots of people who could use a strong dose of HOPE right about now...
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: Sheba on June 07, 2016, 06:21:36 pm
Hi. Bumping this older post, has lots of good outcome stories that are helping me feel more calm as my # days til surgery dwindles !
Title: Re: Hope and Inspiration for the Newly Diagnosed
Post by: Sheba on June 08, 2016, 09:27:00 pm

Hi Cityview -

surgery will be in Dallas @ Medical City (we live nearby)

all the docs that I talked to said only Retrosig approach makes sense for mine, since it is mostly in the CPA area, and my hearing is still pretty good