Success stories?

[Twindy]

People say not to look too deeply into blogs/forums as most people who write in have had issues--it might be helpful to have people's success stories in one spot for us newbies to come to and re-read, as we get frightened by the horror stories.  So if your willing, please share your success with whatever treatment choice you made.

[Jim Scott]

Twindy ~

O.K.

Beginning in 2000, my ability to hear in my left ear began to slowly but surely diminish but I shrugged it off to 'age' (I was in my 50's).  In 2005, I began experiencing intermittent stabbing pain at what I later learned was my AN site  I also began to lose my sense of taste and subsequently lost all appetite - and over 30 (unneeded) pounds.  My balance began to deteriorate in late 2005 and although I resisted, my wife finally pushed me to see our PCP (she made the appointment).  He thought I might have a 'sinus problem' affecting my sense of taste so he ordered an MRI.  It discovered a 4.5 cm AN. 

Long story short: I found a neurosurgeon with decades of experience removing ANs.  He proposed debulking the tumor (and severing it's blood supply) to preserve my facial nerve and then FSR (26 sessions) to destroy the remaining tumor's DNA.  The 9-hour surgery went fantastically well.  No nausea, headaches or facial weakness.  My AN symptoms disappeared almost immediately following the surgery.  I was out of the hospital within 5 days, driving within 2 weeks (with my doctor's approval) and back to my usual routine within a month of the surgery.  The subsequent FSR (90 days later) went splendidly.  No headaches or other issues and within 18 months, the beginnings of necrosis were visible on the MRI. 

Today, coming up on my 6-year surgery anniversary, I'm doing great.    That's my story - and I hope it encourages you. 

Jim

[LakeErie]

I don't know if four months constitutes a success story, but my tumor was 4.7 cm and I had a minimally invasive retrosigmoid surgery that removed 90% of my extensive tumor. With over 600 CP angle operations, my surgeon determined leaving residual tumor on my brainstem and on the facial nerve to preserve function was more important than a total removal. After surgery I was SSD and had vocal cord paralysis and swallowing difficulty. I had some minor dizziness that has resolved and I walked four 15 minute miles today with no sense of ever having had surgery. I had minor facial weakness that resolved in two weeks. A CSF leak also resolved on its own in three weeks. I had facial numbness before surgery around and in my mouth and on the right side of my chin. My lips and the corner of my mouth tingled all the time following surgery, but they are now no longer numb. My chin and tongue, however do remain numb.
My voice has improved and so has the swallowing - they are close to normal. My doctor told me at three month follow up that I can resume runnning whenever I feel ready.
I hesitate to call this a success only because my surgeon feels there is " a good chance " I will need further treatment for regrowth of the residual tumor. If there is regrowth, he advises GK will be the  treatment. But he does not know if it will regrow as the remaining cells may be dormant, or if it does regrow, when it will happen. Therefore he does not want to GK the residual tumor now, and wants to follow the tumor with periodic MRI's.
But I am able at four months post-surgery to say I feel the  same as I did before surgery in every way except for the SSD which is not bothersome for me and the weaker voice and sometime difficulty swallowing some foods, both of which my doctor feels will eventually resolve completely.

[HisHands]

Twindy,  About a year ago I started filling a fullness in my left ear and thought I could hear fluid moving.  My ENT treatment was constant antibiotics, then advised sinus surgery & tonsillectomy.  A CT scan was done for the sinus surgery (which typically doesn't show ear area - I was told) and I had the sinus surgery and tonsillectomy at the same time in June, 2011.  I never got better and started complaining about a new symptom - facial twitches.  Again, for several months, treatment consisted of more antibiotics & no improvement.  I decided to go to another ENT and an MRI was scheduled immediately after hearing about the facial twitches and loss of taste on the left side of my tongue.  MRI was done and the next day, November 16, 2011, I was told the same thing everyone else on this forum was told....TUMOR!!  Lot of research led me to select a team and select GK procedure which was done on December 16, 2011.  Yesterday marked two months since GK treatment and I posted my progress last night in the Post Treatment section of the forum site.  I've pasted it below:

Today marks two months post GK procedure and I'm happy to report I feel great.  Although two months is a  short period of time, I haven't experienced balance issues, severe headaches, concentration/memory issues, facial issues, etc.  I've worked every day since treatment and very thankful for my progress. 

I've continued to keep my ordeal very private, and I still conduct meetings at work, serve my community, etc.    It's amazing that the people I'm with every day have no idea of what I've been through.  It has taught me that we daily come in contact with people that may be privately experiencing health issues, heartaches, etc. that could use a word of encouragement, an act of kindness or just a smile.

This is not intended to be a bragging post, but intended to be encouragement to others facing fear no matter what decision is made for choice of treatment.  For several weeks after my treatment, I faced fear of the unknown and was concerned about what "might" happen.  For me, an abundance of prayer and strengthening of faith certainly calmed my fears.  Additionally, the encouragement I received from several on this forum was and still is greatly appreciated.  Jim Scott once said that you have to make peace with your AN and it took me a little while to "get it"......Jim, I'm happy to say that I've made peace with mine and it certainly made a difference.  I will continue to give updates on my future progress.  Thanks again for all the wisdom, advice and knowledge that is shared on this site.  Blessed to be in His Hands, Emma

[ombrerose4]

My success story: was 50 yrs old when diagnosed and in the middle of changing my career by returning to school to become a nurse. Had my surgery, found this amazing forum, returned to school but not to work. Battled numerous post op headaches, plus a few other minor inconveniences (SSD),  finished school, passed my boards, became a local ANA support group leader and am now working as a nurse who goes out into the community to work with the geriatric population. I share my stories and my success with my clients, friends, families and strangers and am grateful for the opportunities life has given me.

[Tumbleweed]

I had CyberKnife (CK) 3-1/2 years ago. The first couple of months following treatment were very rough for me; I was extremely fatigued. But about six months after treatment, I started feeling great. Soon thereafter, my tumor began to shrink dramatically. Now, my AN is only about 1/3 the volume it was when I was treated, my balance has returned about 80% and my tinnitus is about 90% lower in volume. My energy level is roughly what it was before my symptoms began (a little less for having aged around 11 years) and I regained a tiny bit of hearing in the bass frequencies. I lost a bit of hearing in my midrange frequencies, but that would have almost surely happened if my AN were left untreated. And six doctors -- including neurosurgeons -- told me before treatment that surgical resection would have surely left me SSD immediately after the operation. Since getting CK, I still have very useful hearing on my AN side. Life is great!

Best wishes to all,
TW

[stephSF]

Great idea Twindy!  I was diagnosed nov 2012 with a 1.6 cm AN after years of gradual hearing loss and then in July 2012 my ear went " plugged" and felt full with a big change in tinnitus.  I went to the HOUSE Ear Institue and had Translab lab surgery on 1-25-2012.  They got all but a tiny piece of the sac which, if removed, I would have sacrificed my facial nerve.  My recovery has been amazing.  I have virtually no balance issues, I was driving at 3 weeks post op, I am happy, loving, greatful to be alive, and the only things going on are a little wonki, left taste buds wierd.  Both of these are expected and are not a big deal.  I am SSD and continue to adjust.  This is my story and I am more then happy to share it.

[leapyrtwins]

Like Jim and several others, I've been sharing my success story on this Forum for a few years now but will give a condensed version here.

In April 2007, at age 45 1/2, I was diagnosed with a 1.5 cm acoustic neuroma.  My symptoms leading up to diagnosis were a feeling of fullness in my left ear and diminished hearing.  My ENT, who ordered my MRI, referred me to a neurotologist who does both radiation (GK) and surgery.  I was given the choice of either, and although I originally said I'd never have surgery that was ultimately my choice.

I had my surgery approximately 6 weeks later on May 31, 2007.  I chose the retrosigmoid approach - as opposed to translab - because I wanted my surgeons (neurotologist and neurosurgeon) to at least try to save the hearing I had left.  I knew the odds weren't good, but I wanted to at least say we tried.   Long story, short my tumor was wrapped around my hearing nerve and in order to remove it entirely my nerve was sacrificed.  My surgeons also discovered during the surgery that my AN had almost doubled - so in hindsight it was a good thing I didn't opt for radiation (my neurotologist's threshold for GK is 3 cms).

My side-effects upon wakening were SSD, extreme nausea, metallic mouth, dry eye, dry mouth, double-vision, balance issues, and very slight facial paralysis.  The nausea lasted a long time, the double-vision cleared up in a few days, and the facial paralysis was fixed with a single-dose of steroids.  The balance issues, dry mouth, dry eye, and metallic mouth went away in a few months.  The SSD was permanent - and while others say they adjust, I never did - so I opted for a BAHA. 

With the exception of being SSD, my life has gone on normally.  There is nothing I can't do as a result of my AN or my surgery. 

I've never regretted my choice to have surgery nor have I regretted my decision to have a BAHA.  I feel I made the best treatment decision for me and I don't know how I would cope without my BAHA. 

My post-op MRIs have all been clean; I'll be having my next one in April.

Jan

[cindyj]

I think people measure "success" in different ways in all of life and, certainly, in our AN journeys.  Was the doc able to get all of the tumor?  Was he able to save my hearing?  Facial nerve good?  Am I alive   I won't tell my whole "story" as it is very similar, if not the same, as everyone's on the forum...but, I will say that I see my treatment as a success.  I was back on the tennis courts within about five weeks of surgery, my husband and I took up ballroom/swing dancing and we go dancing twice a week, and I have done several 1/2 marathons since surgery (had never done one prior to AN diagnosis)...yes, I'm SSD, wonky-headed quite a bit, tinnitus keeps me company at all times, but these are small, minor things in my way of thinking...My AN journey is the last thing people learn about me when I make new friends, many don't even know about it.  I would not be discussing it now if you had not asked the question

Cindy

PS -     yes, they got all the tumor and facial nerve is fine...success!

[Mickey]

My success story is a little different up untill this point. About 5 years ago after noticeing tinnitus for half my life and migranes, an ear infection and clogging came upon me. After antibiotic treatment and hearing tests (slight high toned loss on AN side) it was recommended for a MRI. Sure enough a 1cm AN was present. I did my homework and ended up with a great team of AN specialists at NYU. After speaking with my doctors (A dose of steriods also) we decided on W+W. During this process I said if I`m going to W+W I might as well find out all there is to know on what may help me feel as best as I can be. (Most of the stuff we do and take is in the W+W posts). In about 6 months I started to actually feel better than previous years and onward. My 5th yearly MRI coming the begginning of summer, so far all stable. Just a little twist on things trying to keep positiveness for all with our condition. There's alot of  good things ahead... Best wishes, Mickey

[mindyandy]

Wow nicely put Cindy 

[cherrypiper]

well success story is , my tumor is gone . It was about the size and shape of a large almond. more length wise then round.

They went in behind the ear , i was already SSD over there. got it all and no sign back since December 2007.

Now all the other issues i have aren't a success . But lets get this set forth, i am very glad i have had the surgery.

However, i still and always will have same side facial paralysis. My same side eye "socket" and lid droops. Nothing over there moves. cant smile over there, cant suck thru a straw over there, must use eye-drops cause the tear ducts don't work over there. A face lift might work except insurance doesnt cover that. If you have ever seen Bell's Palsy , that is what i look like. or maybe a mild stroke, which for a soon to be 61 year old isn't all that big a deal.

BUT , i wouldn't recommend this surgery to any younger lady. The 20 % chance of facial issues is too high FOR My tastes.   unless of course you HAVE to have the surgery.

The way to look at it i suppose is there is an 80% chance you will be like many others and have no issues with your face . And i know Mr. Jim will chime in but that's my success.

[Syl]

I think that every AN story is a success story. I certainly had my difficulties, challenges, ups & downs, but in the end it's a success story.

In summer of 2007 I had sudden hearing loss and, soon after, lots & lots of dizziness. I had to go to my primary care dr a couple of times before she sent me to a head & neck specialist.

My retrosig surgery was in June 2008. My hearing went from normal before the AN to 60%, then to 20% word recognition after surgery. It's taken my brain a while to adapt to my hearing loss, but both my brain & I have adapted.

The first 3 years post-op were very difficult. I hardly ever got headaches before surgery. Post-op, this has been one of my biggest isssues. I was getting almost daily headaches, sometimes I even got them more than once in a day. Fortunately, that has gotten so much better.  I now go for a couple of weeks without headaches. I've also had a major wonki-head, but that too has subsided. My balance has also improved.

Syl
 

[New girl]

My initial symptoms were constant tinnitus and mild balance issues.  I also had some hearing loss.  My retro-sigmoid surgery was performed 9/27/2011 for a 9x14x9mm tumor.  The surgery took 9.5 hours to totally remove the tumor.  I was only in the hospital for two nights.  I had minor wonkiness, no nausea, no facial nerve issues, and now have 80% word recognition (this was only slightly better pre-op).  The wonkiness went away within a couple weeks after taking daily walks outside and now I only rarely get a bit slightly off balance on days when I feel exhausted.  Now days I get a mild headache maybe weekly (or less) which subsides with ibuprofen.  Pre-op I experienced moderate and severe headaches all the time which I always thought were due to allergies but I think now may have been tumor related.  I do notice that my word recognition is worse post op.  When speaking at work I tend to be searching for words often.  Hopefully this gets better over time.  I am really thankful for my outcome! 

[rachie1989]

Hi,

My name is Rachel. I don't feel I am a success story. I have had 2 acoustic neuroma brain tumors. I am currently 22 years old. My first tumor was found in 1997 when I was 8 years old. The tumor was found when I failed a hearing test in my left ear at my elementary school. Everyone was required to take 2 hearing tests annually. I went to a neurologist familiar with acoustic neuroma tumors and he said I needed to have surgery as soon as possible. My parents wanted me to wait two months until I winter break. After the surgery I was completely deaf in my left ear.

In 2002, I woke up one morning and had complete paralysis of the the left side of my face. I received some acupuncture treatment from my family's chiropractor, most of my facial movement was restored. I was thrilled when I looked in the mirror saw I could slightly smile on the left side of my face.

In 2003, I had a BAHA surgery and the first few weeks it was great. Then I started experiencing unbearable pain and eventually I could not use the BAHA or touch the area the screw was implanted. I had my surgeon remove the implant when he removed the second tumor.

The second tumor was found in 2009 when I was 19 years old. I noticed that I was experiencing temporary deafness in my left ear. They found no evidence for this, but decided to give me an MRI. They found the second tumor, it grew from the remains of first tumor left from the surgery in 1997. This tumor was on my facial nerve. When this tumor was removed I lost movement in the left side of my face. This time I needed to have a metal weight surgically implanted in my left eye lid. This allowed for me to completely close my eye lid.

The last brain surgery intensified my head pain. I was diagnosed with chronic migraines almost 2 years ago. I was relieved to find a doctor I told my symptoms to and said he understood and my symptoms made sense when the many surgeries I have had.

After all this I remind myself of all I have experienced and all I want to experience. After my last brain surgery in 2009, I decided I would live my life for me and let go of fearing a 3rd tumor. I am in graduate school for a masters clinical psychology and I plan to live my life with no fear of tumors and acoustic neuroma.

After writing all this I feel I can consider myself a survivor of 2 acoustic neuroma brain tumors.

Sincerely,
Rachel