newly diagnosed

[steve399]

I've been having slow gradual hearing loss for the last few years, other unrelated chronic health issues which kept this on the back burner.  I finally got to see an ENT who ordered an MRI. The results came back positive, an 8x17mm AN which has already
taken most of my hearing in my left ear.  The ENT says this issue not particulaly time sensitive, but I should be choosing between
cyberknife and traditional surgery.  Not to restore hearing but to prevent it from getting bigger and causing other problems.
At 56 years old, I am a 'tweener, younger and surgery is more the clear cut choice, older it would be radiation.  Not sure which way to go so if anyone can give non-professional advice i'd much appreciate it.

[Echo]

Hi Steve,

Sorry to hear you have been diagnosed with an acoustic neuroma. Wish I could give you some great advice, but I'm in much the same place as you.  I was diagnosed June 2012 with a 1.8cm AN.  I am now 58 and it's taken me a year to reach the point where I am willing to get this treated,  however I am still trying to decide between Retrosigmoid or Gamma Knife.  All I can tell you is that this is a terrific place to do your research and meet some amazing people to help you out.  Do as much research as you can and hopefully you will see the route you wish to take.  There is a wealth of information here to help you find where to have your An treated and great references for the Neurosurgeons who specialize in Acoustic Neuroma's.

I wish you all the best!
Cathie.

[arizonajack]

Welcome to the club that nobody wants to be in. 

I was 66 when I opted for radiation.

I'm not sure that I see any real difference between the options for a 56 year old and a 66 year old.

You'll have to do all the research on the options and then choose one.

I disagree that it's not time sensitive. These things are bad and they grow. Mine grew 20% in 6 months. I also neglected my gradual hearing loss until it was too late and had lost all the hearing on my AN side by the time I had my GK.

Radiation has gotten very popular and successful for small tumors and people of all ages are opting for it.

Not trying to push you in one direction or the other. Poke around these forums and read other stories. You'll find people who have had surgery, radiation, and observation.

You'll come across numerous links to resources.

Get several medical opinions.

Then act.

[mesafinn]

Hi Steve,

I'm sorry you had to find us----but I'm glad you have (if that makes sense!)

I am 47 and opted for GK (radiation) last month.

There's a lot to learn, a lot to consider, and a lot to ask.  The decision can only be yours.

Wishing you the best and here to help if we can,

P.

[Jim Scott]

Hi, Steve ~

The AN diagnosis is always problematic and choosing a treatment - surgery or radiation - is even harder.  Upon my diagnosis of a 4.5 cm AN, surgery - and soon - was the only option, so I was spared the treatment decision.  However, I was very concerned about facial paralysis and so my neurosurgeon presented me with a plan to debulk the tumor; severing it's blood supply then peel away layers - making it thinner - then subject it to radiation...FSR...which he felt was the most conservative way to proceed.  I agreed.  The surgery (9 hours) went perfectly (no complication, fast recovery) and the subsequent FSR treatments (26) were uneventful and successful.  Subsequent MRI scans indicated the remaining tumor showed necrosis and shrinkage.  My pre-op symptoms disappeared and today, 7 years later, I'm doing great.  For what its worth, I was 63 and in good health at the time of my surgery and radiation.

To receive more candid medical opinions on treatment, I suggest having consults with doctors that perform both surgery and radiation.

Jim

[james e]

I was 59 when my AN was discovered, but I had seen an ENT and neurologist for 2 years trying to figure out what was going on. When I got constant vertigo, I got my MRI, and there it was. I did just what are you are doing. How to get it treated? I lost 85% of my hearing, lots of vertigo, but my facial nerve was still functioning. That is why I decided to get treated right away. I like to wink at my wife and grandkids, smile on both sides of my face and I wanted to be treated right away to preserve my facial nerve

I had translab surgery where my inner ear was removed to give a more direct route to the tumor. My facial nerve was preserved, and I have a Cochlear BAHA for hearing. Why did I have surgery? I read every day for lots of days on this site. I made a Ben Franklin list...good vs the bad...of the experiences that the veterans of this tumor had. I took my emotions out the process. As Joe Friday said, "just the facts lady."

It took me about a month to decide. I interviewed 4 doctors. Checked my Ben Franklin list, and picked surgery. Start your list, interview several doctors, and the answer will appear.

James

[Chances3]

Hey Steve,

Sorry to hear about the AN, and the hearing loss.  I was 54 when I chose surgery.  I was having full spin vertigo attacks every few days like clock work.  I didn't have the luxury to wait and watch.  Having a number of other surgeries in my life, I just chose brain surgery.  I just wanted the thing out.  It was somewhat challenging at 54, I have met younger people who seemed to have bounced back pretty quickly from surgery.  One of the things I have learned from the many contributors to this site - each AN is different, and each result is different, so do all your homework before you make a decision.

Lots of luck, and keep posting.

[NRB]

I cant really say I am newly diagnosed but have only recently started struggling with symptoms like the ones you have all described, horrible vertigo, hearing loss, and tinnitus. May I ask the people who have had surgery, how are your symptoms now? Did the surgery relieve any of them? I am scared of surgery...

[james e]

I no longer have big time vertigo, but I am wonky 24/7, and I just live with it. After a while, I just got used to it.  Before surgery I had 15% of my hearing, and I could locate the source of sounds. After surgery I am SSD and cannot locate the source of sounds, but I have a BAHA, and it is a great device. I had tinnitus before my surgery and it did not change afterwards.

Surgery was pretty easy for me. I just slept through it. I am sure  it was pure hell for my wife while I was in surgery, but she survived it. The recovery was harder for me than the surgery. No pain...it was just getting used to the new type of balancing I had to learn. It had an impact on my vision. I use my eyes and my feet to balance me. Some people here say their remaining vestibular nerve takes over, and their balance works just fine. I think mine does not work at all, so I use my eyes to balance, and any kind of rapid movement can send me into a fall. Going up and down stairs is very difficult for me.

Not trying to paint a bad picture here. I have a wonderful life. I still take my boat out. I just finished one hour of weight lifting. Can't ride my bike anymore. Right now I'm going out to cut the grass. Life is really good to me.

James

[Lillygold]

I had trans lab Nov 13 2012. Tumor is gone. I had facial and eye problems. I still have eye problems like tearing and blurie vision at times .  I have a hard time saying certain words and eating certain foods. It seems to get better as time goes on. I do have some balance issues but not too bad. I can drive, take walks etc. I am now adjusting to the hearing loss. I go in July to discuss hearing items to help with the hearing. Surgery was 7 hours. Was sick after surgery for a day. But was in no pain. Glad the tumor is gone. Just have to learn to live differently.

[Imcamodchick88]

Hi there,

I know I'm a little late, but better late then never right?

To Steve, the best thing I can tell you is do your research. When I went into the dr, we sat down, he would say something and I was able to ask informed questions. In the end, we had decided on the same thing. The option of radiation was taken away from me, as the tumor was pressing on my brain stem, but I probably would have taken it simply to preserve my hearing.

What I'm not sure I understand as how it is "not time sensitive." I started showing hearing loss, waiting for 4 months to get an apt with an ent, and 3 months later was having surgery. Then again there is a minor age difference... I was 20 at the time of diagnosis, and 21 at the time of surgery. I'm 22 now.

As for NRB, I never had vertigo really, but I do still have tinnitus and of course hearing loss since I had translab. My surgery was a little more complicated than most, and since I had never had a surgery in my life, my recovery was hard until I got up and did it. One I did, I was able to get up and moving. I returned to school by January 13, taking 6 hours only, since I couldn't be in labs. I returned to work a week later. The only thing I still have problems with is memory at times. And my balance isn't the best if I'm tired. However, I have the perfect excuse for not doing chores.  and for when I'm late. My surgery was 11 hours, and I was motion sick after, but that's it. I had no facial paralysis, no drooping, Etc.

And to add on to James's post, I'm one of the ones who's remaining vestibular nerve does all the work. I can ride a bike, but its really hard to do. I had to relearn. It's just a different person, different body, different response. And I'm a very stubborn person at that.

Good luck on whatever you chose.
Kristin

[steve399]

update:   consulted several,  including a surgeon.  Given all factors in my case, I am in watch mode.  I have to have another MRI  (closed).  The open MRI images were good enough for diagnosis, but not good enough to use as a baseline for size monitoring.  He also wants me to have a balance test now.  Then, another MRI in 6 mos to see if or how much its growing.  I am clostrophobic so he gave me a script for 2mg ativan to take 1 hr before test.

[arizonajack]

  He also wants me to have a balance test now. 

If he's referring to a VNG (Videonystagmography) I suggest you question him carefully about why he wants that test.

http://www.keyhearing.com/videonystagmography_vng.aspx

I had my first MRI in April 2012 and was diagnosed with the AN. I already had balance issues since December 2011. The ENT referred me for a VNG.

My history was taken when I got to the facility and the doctor was confused as to why I had been sent for the test when I had already been diagnosed with AN. According to her, the VNG is part of the diagnostic process to help determine the cause of imbalance and seemed superfluous since I had already been diagnosed with AN.

Well, since I had made the trip and my copay was only $50, I went ahead with the test and was handed the results and an explanation at the end of the test. The results: I have balance issues and my AN ear is non-responsive. Already knew that going in.

Think about my story and discuss it with your doctor. Especially if you have a big copay or coinsurance percentage to pay.