Does anyone have any great news?

[Warr76]

I have been recently diagnosed in September after some loss of hearing and tinnitus in my right ear. Long story short, I have a 1cm acoustic neuroma in that ear. So I have looked around on the internet, got an opinion for a doctor at GWU. Dr. Monfared. He is suggesting retrotransigmoid surgery. The only issue with him, as he was very knowledgable, was that he does not do many of them. He said maybe one a month.
So then we went to Mayo clinic, meeting with Dr. Carlson and Dr. Link.
    We have planned to have the retrotransigmoid in the middle of November. They said that they can take it out and I will feel better in 3 to 4 months. I probably won't get my hearing back.
They did not mention memory loss or depression that can come with the surgery.(It isn't mentioned much in the pamphlets that I have.) They asked if I get headaches. I said no not usually. So this is the option that they suggested.
I am pretty active and want to stay that way. The tinnitus is very annoying!
But after reading these posts. I am getting nervous because so many are very negative. I need the truth though so thats o.k.
I'd like to hear some good news... They said to train as if you are going for a marathon. Eat healthy, workout and stay active.

[Cheryl R]

There are many who do do well and may be on here for a time and after their treatment are gone from here and back to usual lives.       That does not mean that anyone ends up perfect but that one adjusts to the single sided deafness or SSD.      One can have balance problems and after a time and for some vestibular therapy, one does well.    You may always have some balance issues in the dark or when tired.   We all vary in how it goes.     How our brain compensates for loss of the balance nerve varies.    Some do before treatment over time esp if have had tumor for a time.   For most any facial issues are temporary and in the other cases there can be some surgical ways to help.       Fatigue is an issue for a time also past surgery.       The hardest part is to be patient and let yourself heal and not push yourself too fast.                             Where are you located?       I go to Univ of Iowa for my care.    Dr Bruce Gantz.      He also does more mid fossa than Mayos if one is a candidate for possible saving of ones hearing.   
I have NF2 with having had 3 tumors and do have some issues but am not the typical AN patient.        I was back to work as an RN in a hospital setting after 2 months past 2 of the surgeries but retired before the last tumor surgery.
         Making the decision on what treatment you want is hard.            The memory issues and depression can occur but that varies a great deal on each person too.                    Hang in there and know we are here to be of help too.
                                                              Cheryl R

[Warr76]

I am located in Virginia.
I have accepted the hearing loss somewhat but am more concerned about the other stuff, headaches, balance issues.
I am sure the depression will come at some point.
I don't think I know what i am in for, even though I have read all of the pamphlets etc.
 

[bethtretrault]

have you seen a MD in VA? What city are you in?

[Cheryl R]

I can only speak for my own experiences with 4 surgeries.  3 tumors due to having NF2.  This is rare.      I did have a CSF leak which is thought to be from the hospitals new use of a product to help hold things in place by the tumor once surgery was over.      3 people had leaks with this colloidal implant.   they went back to the previously used product then.                I myself never had headaches, never dizzy.       There is a difference between feeling off balance or wonky head as we call it here and dizzy.    I found I did have balance issues when walked outside.    That improved with time.     I have had some depression which I feel was more after my last surgery.         I also have a family history of it.      The tired kind of weak feeling was what had the most.     Poor appetite for a time.                My dr has his protocol of no steroids once are discharged unless have some issues to need them.       Some drs do send patients home on them and they have the issue of feeling wired, hungry and having problems sleeping.    I can only say try not to over worry about the post op possibilities,        Id you do end up with some, then you earn how to adjust as most are temporary.              The not knowing before having surgery can be harder than how you feel after surgery if that is what you choose to do.                            Finding out one has an AN is a scary time.      We've been there and know how it feels.                            Cheryl R

[PaulW]

I was diagnosed with a 1cm tumour and chose Cyberknife.
That was over 4 years ago.
I won't say that it has been all easy.. But I have continued to work the whole time.
I still get a few symptoms... Last week my hearing and balance went down hill a bit but has all come back again.
But in general life goes on like before..
My hearing is ok... Not great but still considered the low side of normal and a hearing aid is unnecessary
I feel better now than when I was diagnosed.

Shortly after diagnosis I tried to go snow skiing but found it challenging... The loss of balance made it hard work.

Skiing is now fine... So my balance has also improved with time.
My life goes on like it did before, slightly reduced hearing in one ear the only real issue.
That only bothers me in loud environments where it is a little harder to hear what some people are saying.

[Echo]

At 1cm and depending on your age, you would be a candidate for Cyber Knife or Gamma Knife.  Have you considered looking into this option and discussing it with a specialist?  I was diagnosed with a 1.8cm AN and within a year it had grown to 2.4cm.  I spent considerable time reviewing all my options and decided for me personally, Gamma Knife offered the best outcome with the smallest number of risks for complications - including headaches which I am prone to get.  It was a good choice.  I am one year post GK and while I still have some issues, overall I am much better than I was pre treatment and life is good!  I still have some rough days, but they are certainly becoming less frequent and they are completely manageable. 

There are many success stories for all treatment options.  Do yourself a favour and get several referrals, look at all your options and follow your gut feeling.  If you opt for surgery find a surgeon with lots of experience - the more experience the better! 

Cathie.

[sandyinwisconsin]

During my decision process, I talked to a patient in her 40's
who had retrosigmoid.  She lost her hearing, but she was back to
doing work and school activities a week later. 

I see a lot of other good surgery stories too.  I chose multiple
treatments of radiation, and I'm 44 years old.  I'm not out of woods yet.
My first MRI 6 month follow up was good news, but I have many more to go yet.

I believe the older the patient, the more appealing radiation is.

Sandy

[anothereveryman]

I may have had a lot of worries here, but my actual surgery experience was so good that I can hardly imagine it going better.

So many risks of surgery didn't happen: my face is fine and I have all my expressions, I watched The Last Unicorn with my girlfriend for the first time in decades and I found out my tear ducts work just fine too. I got a dry mouth and some phantom taste sensations but there's a good chance those will heal away, and my jaw stiffness and jaw pain are already improving. I can walk without my cane but keep my cane for peace of mind, and my vertigo attacks are completely gone.

There is hope, and there are very good people out there that can help. I highly recommend Dr. Slattery at House Clinic.

[littleowl]

Good Evening,
Like most everyone here I was experiencing ringing, fullness and difficulty hearing. A MRI in June confirmed I had a AN. ENT referred me to UNC in Chapel Hill, NC. I met with Dr. Craig Buchman and neurologists Dr. Ewend. Yes I was concerned on what they told me was needed to be done but the entire team at UNC did a superb job. I had middle fossa surgery on September 11th on the doctors recommendation. They felt at my age it was best choice, strong chance to preserve my hearing, they had very little facial nerve problems with this approach on a AN the size I had, 1cm. Biggest concern was it was located close to my cochlea. Surgery was a little longer than anticipated, 8.5 hours and the incision needed was larger as well. September 13th I was walking and the 14th I went home. Had very little pain, no facial nerve damage but obviously I had some balance issues. Did a lot of sleeping but walked my dogs a lot each day. I actually drove a short distance on September 20th, October 7th I got a full release back to work, driving and to start a slow approach going to the gym. Hearing test the same day revealed I had the same percentage of hearing, about 80%. I have been fishing every weekend since my release, twice wading slippery, rocky streams in western NC. My hair has grown back except at incision and can hardly see it. I do use a product called Derm Patch. Check it out, it does a great job concealing the new part I have on the side of my head :-)

If anyone reads this and UNC is an option I strongly urge you to consider them. I am very grateful for the care they provided me.
I am a 53 year old male. Prior to the surgery In was very active playing tennis and softball regularly and also gym workouts 3-4 times a week. I have resumed the gym workouts, I will once again play softball next spring.

Moral of the story. 1) Positive attitude is a must. I told my doctors I would be back to work in 3 weeks, I made it back in 3 1/2. 2) Get in the best possible shape. 3) Choose a doctor that is experienced in AN surgery's

I feel very thankful for my outcome and the new appreciation I have, life is so precious.

[Pharm925]

I love everything littleowl had to say. I would say my experiences were very similar. I had my surgery (middle fossa as well) on April 16th of this year by Dr. Vrabrec (ENT) and Dr. Trask (Neurosurgeron, who thankfully didn't have much to do in my case) and I could not be happier with the outcome. I am now 6 going on 7 months post op and I feel normal 99% of the time. I often forget about the (now lack of!) AN--which is a GREAT feeling after obsessing over it for nearly 2 years before having surgery. I found out I had an AN just a month after I had my thyroid removed (thyroid cancer) and I was in the middle of pharmacy school, so I decided to wait until I finished school for the surgery. I've been through quite a lot in my 28 short years of life so far--all within a 2 year period.

Anyways, enough "woe is me." I had a great experience for BOTH of my surgeries at Methodist hospital in Houston. Both my thyroid and AN surgeons are with Baylor College of Medicine and absolutely fantastic. I had an 8mm AN on the right side and the surgery took about 8 hours (or so I'm told haha). I was in the ICU for one night (standard procedure) then in a regular room for 3 nights (went home on Easter  ) I was walking around with little assistance. I will say when I woke up from surgery it was the dizziest I have ever been in my entire life especially for not even moving--just sitting still. It got better with each passing hour. I was up sitting in a chair for breakfast the next morning after surgery. I have a pretty high pain tolerance and I think the worst part of all of it for me was actually the Lovenox shots---it burned! If that's all I could seriously complain about, then I'm blessed. I had no facial nerve problems and it was nice being chauffeured around for a couple weeks! I, like littleowl, first drove shorter distances. I felt a little better every day. Again, like littleowl, I would say took me about 3.5 weeks before I felt fairly normal and it's only gotten better and better.

Being a woman, I was very concerned about the hair they would have to shave off, but my doctor did a fantastic job and I'm probably in a better boat than men when I think about it because I can cover my scar (which is actually not even that bad!) with hair. The hair around it is growing back mostly, just right where the incision was is hairless, but like I said I can cover with other hair.

I completely agree with littleowl's 3 points. 1) Positive attitude (and some pushy family members to get you moving your head around during your weak times lol) 2) Best possible shape (I did the Insanity workout by Beachbody before surgery and I credit it with my fast recovery because I had a strong core) 3) Experienced AN doctor--mine was absolutely world class. He and his neurosurgeon partner had literally done hundreds of AN surgeries over 10 years together, which I thought was amazing since AN isn't the most common thing in the world.

About a month after surgery I had a hearing test and they preserved most of my hearing. I am obviously so thankful for that. I only lost some higher frequencies. I hardly notice a difference now. At first music especially live in church sounded almost metal like. I am now I guess use to it because it sounds normal again--or maybe a new normal? I only notice a difference when I lay my non AN ear down on the pillow I notice things aren't as crisp sounding or when it's really loud in a room then I definitely favor my non-AN ear.

Best of luck and let us know how you're doing/if you have any questions.

[LakeErie]

There are many good and great outcomes from treatment, what differs is how long those recoveries take and what specific complications occur. Some people are back to work in weeks, but it seems those people have smaller tumors. Larger tumors can involve more brain compression and more dissection of the tumor from the cranial nerves, so the complications can be more numerous and take more time to heal. In my own case, my balance was not greatly improved for 7 months, and my vocal chords took almost 18 months to heal. My throat muscles took about 18 months as well before I could swallow better. I had a relatively large tumor and considerable involvement of the 10 th cranial nerve which caused the vocal cord and swallowing problems. But today at just over three years from surgery, I hardly notice any problems, though I am not 100% recovered in many aspects. I would characterize my recovery as complete and very good.
Many people feel very good immediately after hospital discharge, known as survivor's euphoria. But as the steroids taper off, delayed complications may arise. They did in my case. Just don't be surprised if it does happen and remember that most delayed complications are temporary, but temporary can be a long time of gradual improvement. Good luck.

[Susang8]

As others have noted, there are many successful outcomes and mine is one of them.  I am 58 years old, very active and fit, and in May 2014 I was diagnosed with a 2.8x2.6cm AN that was pressing on my brain stem and cerebellum.  My only symptoms were severe hearing loss and tinnitus on my AN side.  Due to size and location, surgery was my only option. After consulting with 3 different Neuro surgeons, I chose to undergo TransLab surgery which I had on October 27th (13 days ago).  My surgeon was very experienced and was able to remove the entire tumour without any damage to my facial or any other nerves.  I have had absolutely no balance or dizziness issues post-op.  I was driving again a week after surgery.  In short, I cannot imagine a more successful outcome.  Prior to my surgery I stepped up my workouts to ensure that I was in the best possible physical shape and added a number of vestibular exercises to my workout and I believe that this really helped me have a smooth recovery.  I wish you the best of luck in your journey.

[feline]

That is great news because my an was about the size and after surgery I have paralysis, dry eye etc feel good otherwise

[Tod]

I am one of those odd cases. The largest dimension of my tumor was about 4.4cm, it was a little larger than a golf ball. I had serious compression of the brain stem. By the time I realized I had a problem, followed by an MRI, and diagnosis, I was told I had to three to six months or face coma and possible death. I had 32 hour surgery (yes, that is wayyyy unusual) in which they were able to remove up to 95% of a tumor well connected to the artery. I spent six days on a breathing machine and another week in ICU. I went home, rather than into rehab as some doctors wished, and spent the next 10 weeks getting better. I did suffer from paralyzed vocal cord and swallowing difficulties. Like you, public speaking is a big part of my job, so when I did go back to work, it wasn't easy, or pretty. But it all worked out following a series of injections to plump the vocal fold; and as we were about to schedule a surgical implant a year later, I had enough improvement to say "No, thanks."

The tumor demonstrated new growth 18 months after surgery, so we embarked on 28 sessions of FSR. The remaining bit of tumor is firmly affixed to the artery - we expected growth. My surgeons waited on the FSR to give my body as much time to heal as possible.

Close to five years following surgery, and three years following FSR, I am, and have been continuously, pretty awesome. My voice is almost normal. My swallowing difficulties are real, but essentially minor in the scheme of things, as is an associated cough.

You can read an expanded version of my story here - http://randomdatablog.com/brain-tumor/

I can give you all kinds of brags as to why I am wonderful, but in all modesty, just trust me. ;-)

-Tod