Author Topic: Hope and Inspiration for the Newly Diagnosed  (Read 35368 times)

Lisa Peele

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Hope and Inspiration for the Newly Diagnosed
« 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...
« Last Edit: June 20, 2006, 04:35:50 pm by Lisa Peele »
Lisa Peele, 38
Dublin, OH
4.3 cm X 3.3 cm (right)
Translab.
House Ear Clinic (Friedman and Hitselberger)
June 14, 2004

mlwitte

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Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
« Reply #1 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  ;)
Marcus  :-)
We all fall down. God helps us get back up.
Life is a process consider all your options and live each day.
Like Winston Churchill, "Never ever surrender"
AN 7mm disagnosed 3/16/05 left ear, Surgery - Stanford 7/13 - Dr Jackler and Dr Harsh - total hearing loss in left ear

David Wrubel

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An excellent surgical outcome on a monster AN:
« Reply #2 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.
[/b]

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.
Regards....DW

5+ cm right side AN removed at House Clinic, Drs. Friedman & Hitselberger 4/13/2000, age 47.  Facial nerve intact. No eye problems, headaches, or balance issues. Drove 6 weeks later. 1st biz trip 8 weeks later. Huge tumor....great outcome.

sallyschindel

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Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
« Reply #3 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.
http://community.webshots.com/album/158179438lPSkha


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


rebecca

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Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
« Reply #4 on: May 11, 2005, 10:42:36 am »
Greetings!

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 emedicine.com.  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.

Mary 117

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Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
« Reply #5 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,
Mary
2cm x 1.5cm AN, Middle Fossa, Dr. Brackmann  05/24/05
Mild hearing loss, mild facial weakness, no balance issues

"well behaved women seldom make history"

Lisa Peele

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Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
« Reply #6 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 book� 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!
« Last Edit: June 20, 2006, 05:01:49 pm by Lisa Peele »
Lisa Peele, 38
Dublin, OH
4.3 cm X 3.3 cm (right)
Translab.
House Ear Clinic (Friedman and Hitselberger)
June 14, 2004

rebecca

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Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
« Reply #7 on: May 13, 2005, 01:51:14 pm »
Lisa,

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.

Thanks.

I think her posting was under general discussion.

Lisa Peele

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Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
« Reply #8 on: May 13, 2005, 03:44:26 pm »
Contact information for House (taken directly from their website, www.houseearclinic.com)


COMPLIMENTARY ACOUSTIC NEUROMA CONSULTATIONS

 
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
Lisa Peele, 38
Dublin, OH
4.3 cm X 3.3 cm (right)
Translab.
House Ear Clinic (Friedman and Hitselberger)
June 14, 2004

alwaysanonymous

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  • just hold your head up high and be brave!
Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
« Reply #9 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

Kim

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Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
« Reply #10 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.
« Last Edit: June 14, 2005, 09:45:19 am by Kim »

stein78

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Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
« Reply #11 on: June 15, 2005, 03:10:51 pm »
I posted my story here, I consider my outcome excellent!

http://anausa.org/forum/index.php?topic=224.0
29 years old
2.5cm AN - left side
Removed May 10th, 2005
Dr. John Leonetti & Dr. Douglas Anderson
Loyola University Medical Center
Chicago, IL

kstanley

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Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
« Reply #12 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
5 cm Acoustic Neuroma
Trans-Lab
Removed March 31, 2005 at House Ear Clinic
Drs. Friedman and Schwartz

matti

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Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
« Reply #13 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.

matti
3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

julieteresa

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Re: Excellent Outcomes--Hope and Inspiration for the Newly Diagnosed
« Reply #14 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!!!
4.5 Acoustic Neuroma (right side)
April 22, 2004
House Ear Clinic
Dr. William Slattery III and Dr. Mark Schwartz