Author Topic: Hope and Inspiration for the Newly Diagnosed  (Read 35362 times)

Lisa Peele

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #15 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...
« Last Edit: June 21, 2006, 10:32:00 am 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

littlemissrory

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #16 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!

Cheers,
Rory


katmumof3

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #17 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 :)
2.5cm AN removed 26/4/06 retrosigmoid
awaiting follow up MRI

Jim Scott

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #18 on: June 21, 2006, 02:34:14 pm »
Hi:

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)
« Last Edit: July 09, 2010, 04:22:01 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

BevM

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #19 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.

Bev

Mark

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #20 on: June 25, 2006, 10:54:27 am »
Bev,

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,

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

marystro

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #21 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,
Mary
« Last Edit: July 04, 2006, 12:12:40 am by mstromitis »
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

dgrummer

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #22 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. 

comfortzone

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #23 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! 
8 mm left side AN Retrosigmoid surgery with Dr Akagami at Vancouver General Hospital April 3, 2014 SSD

Obita

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #24 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.

Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

FranDS

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #25 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 (www.cyberknifesociety.org)  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.
Fran
7mm May 2, 2006
Waiting and Watching

ppearl214

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #26 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. :)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

hollyjo

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #27 on: September 03, 2006, 11:26:01 pm »
Hi,

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.

Holly

Right side facial schwannoma, size unspecified
Mid fossa 11/06 (facial nerve severed; nerve graft at time of procedure)
Drs. Arriaga & Baghai
Migraine & vestibular issues, right side facial paralysis; some movement in lower part of face
Gold weight/lower lid resection - right eye: 11/10.

Larry

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #28 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.

cheers



Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Kathleen_Mc

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Re: Hope and Inspiration for the Newly Diagnosed
« Reply #29 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.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

 


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