Questions!

[george]

I've JUST been diagnosed with this problem, and I'm having a hard time getting answers to my questions.

One problem is that I have a vacation planned and the doctors say, "Go on vacation and we we're worry about it when you come back."  I have an appointment for July 14th.

But I would like some answers now and I can't get the doctors to call me.

My tumor is small and I've already lost A LOT of hearing in my right ear.  The ringing is real bad.

I've been checking out these discussion boards and it is scaring me to death.  There are stories about people who can't drive for two years after the operation and things like that.

The problem is that I am very active:  caving, scuba diving, mountain biking, hiking.  Will I still be able to do these things after the operation?  Will I be able to do any of these things?  I'm particularly concerned about the diving.  But the driving also worries me--am I not going to be able to drive for two years?

Anyway, I'm just looking for some answers.

That's all.

george

[Karen H]

Hi,  My recommendation is to be sure to check out Cyberknife before you commit to surgery.  I too was resigned to have surgery and the more I read the more I didn't like the idea.  I started doing the research into radiosurgery and am convinced that is the way to go.  I am now scheduled next month for Cyberknife treatment at Stanford.

Good luck and do your research!

Karen

[Kim]

Hi; I am 9-months post-op, and have done very, very well every since surgery.

Because of the size of my tumor (4cm) surgery was pretty much my only option; though after doing lots of research I would have chosen it, anyway.  With radiosurgical treatments, if there is future re-growth surgery becomes more difficult, as radio treatments damage surrounding healthy tissues.  Also, there is no data beyond 10 years on theses treatments.  However, everyone has a right to evaluate and choose whatever option they wish.  I had an extremely successful surgery; every bit of my tumor was removed and I had no facial nerve damage at all.  I did lose the hearing in one ear, but it was almost gone anyway.

Yes, there is a lot of scary information on the internet.  But keep looking; there are many, many success stories as well.  Try to imagine that those of us who are doing great are out rock-climbing, etc.,  too much to sit at our computers all that much!

I, too, have always been a very active person.  My physical condition and enjoyment of challenging myself have been creditted with playing a large part in my "phenomenal" recovery.  A positive mental attitude, loving and supportive family & friends, and excellent doctors are also big factors.

Generally, there is no huge rush to treatment as these tumors grow very slowly.  How large is yours?  Of course, this diagnosis is quite stunning and waiting for answers is very difficult.  I waited 10 weeks between diagnosis and surgery, and I spent that time organizing my home/family/work situations for my absence as well as hiking, running, and basically "training" for the upcoming ordeal. 

A doctor who does not provide you with information or makes you wait a long time for answers would raise my eyebrows; insist on a response or find someone else.

To answer your questions regarding post-surgical timeframes, in my case things went something like this:

 5 days-home from hospital
2 weeks-4 mile walk, working part-time, back to caring for my horses
3 weeks-driving, ballet class (yup, that's what I said!)
4 weeks-mountain hiking
7 weeks-putting on Thanksgiving Dinner for my extended inlaws (you have no idea how much this counts for!!)

Good luck, stay positive, and keep exercising.  We'll stay in touch!

[russ]

George
  If you have a good ear to compensate, in time you may very well be able to do those activities again.
  I would take your vacation and enjoy it as much as you can. Typically, ANs grow only about 1 mm. in a year.
  Personally; I'm not a FSR advocate but might consider GK. To me, however, with the reported record of House Ear Institute and mid-fossa surgery, that would be my main interest to be sure the AN is gone and not just therapied. FSR is therapy, GK is radiosurgery and microsurgery is surgery. Therapy does not mean a disappearance of the tumor but cessation of growth with hopes of it's death.
  Russ

[jenifyer]

Hi George,

I am 33, and just had my second AN surgery almost 6 weeks ago.  I looked into radiation therapy this time also but went with surgery again.  For me it was definitely the right choice.  Everyone has a different experience but i want to give you a little bit of mine: 


surgery on Thursday (translab)
went home on Saturday

started walking short bits immediately

at 5 weeks i went back to the gym, although still limited with amount of weight i can lift(dr. doesn't want me to hold breath or strain too hard yet)

Today is six weeks since my surgery and i feel great.  My left side has compensated for my right as far as balance goes and i am hoping to get my BAHA the end of the summer to help my hearing.

There are good outcomes from surgery as well as radiation. 

oh, by the way, i went on a vacation before my surgery which postponed it about 6 weeks...

good luck!
jennifer

[Dave_S121]

George, If your tumor is small you have time to catch your breath and research your options.  You may be a canidate for watch and wait.  I'm a 51 year old male and was diagnosed on July 1, 2004 with a 2.2cm tumor.  After a month of seeing doctors and researching my options I decided to have Translab surgery to remove the tumor.  I had a vacation scheduled in Sedona AZ in October 2004 and my doctor was comfortable with performing the surgery after my vacation.  I spent the week prior to surgery hiking in the hills and mountains in North Central Arizona and it was the best presurgery routine I could have done.  My surgery was the Wednesday after my return.  I was out of the hospital on Saturday, walking around my block on Sunday, driving short distances 8 days post surgery.  I'm now 8 month post surgery and not looking back.  Wd have had a wonderful spring in Chicago and I've done a lot of bike riding.  Even with my balance nerve removed my body had compensated and bicycling or hiking has not been a problem.  Balance has only been an issue when I go from very light spaces to very dark spaces quickly or have to navagate narrow spaces on my bike.  I hope this answer some life both pre and post AN surgery questions. 

Dave Skaja

[stein78]

George, I am 5 weeks post-op and doing great!  I just posted my story yesterday.  Best of luck to you!

You can ready my story here:

http://anausa.org/forum/index.php?topic=224.0

[kristin]

hi george!
i feel your pain! i remember when i was first dx'd i was freaking myself out reading about all the negative side effects from peoples surgeries. but have no (ok..have less) fear..there are positive outcomes from surgery. i thankfully am one of them. since it seems to be a timeline sorta subject....

surgery on thursday
icu until friday evening
discharged from hosp on sunday
mariners/angels baseball game on monday (no joke..was out of it, but i was there!!)
another m's game on tuesday
hollywood and santa monica on wednesday
more shopping on thursday
staples and stitches out on friday, and flew home (ok...that sucked)
3 weeks driving
6 weeks, running, playing softball, working full time and feeling great

[littlemissrory]

Hey George...
I'm right there with Kristen-I had an 8mm left side AN removed via retrosigmoid May 2004 in Seattle by Dr Mangham/Dr Steege.  I feel great.  Didn't research how others felt prior to surgery because I believe all people heal differently.  I had extreme balance issues prior to surgery, no hearing loss-just tinnitus. 

From surgery I went to neuro ICU for 24 hours, neuro floor for 3 days, then home.  Started walking immediately, drove within two weeks of returning home, kayaked (on flat water and practiced rolling) 1 month after going home.  I spent all last winter skiing and hiking- even got in a day of whitewater kayaking before the snow fell. 

There are lots of positive outcomes...choose your path, then plan your goals.  I wish you all the best. 

Have a lovely vacation...you deserve it!
Ciao.
Rory
littlemissrory@hotmail.com

[Kim]

Hmm...I think the Mariners deserve some credit for getting Kristen out there so fast!  You must be a die-hard fan!  The first thing that got me on my toes as soon as I got home from the hospital was my daughters' pony collicced (translation:  really sick pony).  I was in the barn mixing meds and giving instructions; left kids with him but checked myself every 1/2 hr.  The walk to the barn became my greatest immediate rehab therapy.  No hot dogs and beer, though!!

[george]

Hey everybody!!

THANKS for sending all those posts.  They've done A LOT to calm me down, and I really needed it.  I've also found a couple of other people to talk to (who had the surgery), and that has been a big help.

Anyway, I've upped my vacation from two weeks to three weeks and I'm heading to the FL Keys tomrrow to dip a toe or two in salt water.  I'll deal with the tumor when I get back.

But THANKS again!  I'll let you know how in turns out.

[comphibron]

My surgery was Mar 28th.I was home in 4 days.I'm a musician.I was able to play in a couple of weeks.My only problem is CSF leakage,which hasnt been stopped yet.Mangham ans Steege were my surgeons. I would think your age and physical condition will be an important consideration.No problems with driving only the leakage.

[wanderer]

same here,  I was out of the hospital and feeling great in 2 days.

CSF surgery,   was harder it was 1 week later and it took me a few weeks to get back into it.

two months out I was doing most everything.    I did translab surgery for my 2cmX2cmx2cm tumor.

[kristin]

kim, ha! yes, it's a sick and sad addiction i have w/ the mariner's! to tell the truth, i looked at their schedule to see when they were playing aneheim and scheduled my surgery around it. sad, sad, sad. my parents had front row seats for the monday game. i didn't think beforehand that i would be up to going to the game at all, in fact, i thought i would still be in the hospital on monday. so, anyway, they put my sister and i up in a super super awesome hotel w/ down comforters on the bed! but....no cable (what is it about LA and no cable?!) so we had to watch the game from the lounge area. we could see the lights of the stadium through the lounge windows and it took about 1 inning before we decided that it was ridiculous to stay there, so we took a cab to the field and spent $12 and went and tapped on my moms shoulder to tell her to get out of our seats!! i was on a lot of drugs and in some sort of spirit world, but felt great and will never forget it!

[deboline]

George,
  I am almost eight months post op, 36yr old female and also was extremely active. My best advice is to soak in all the information you can and do not only look at the percentages - they mean nothing, you can be 99% likely not to experience a side effect, it means nothing if you are that 1%. Have a positive attitude going in, no matter which route you take, but be prepared so you do not look back and say "if I would have known". I have had a few surprises and many setbacks. I think some days that everything that could have gone against me, has. I also feel alot of resentment toward my doctors. I am a strong person and feel that if I had prepared better, then maybe I would handle things better. Truth is, there are no guarantees and it comes down to what the individual can or can not live with. If you can not live with the thought of having eye problems, balance problems or persistent headaches (although chances are small that you will), then seriously look at other options than surgery. Becuase there is no going back once you make a decision. Also, look at the oddball side affects, I have lost all my taste, have excess salivation that makes me extremely sick and I am beginning to wonder what it was like to have a day that I could even consider doing any type of activity let alone something active - gardening, running, playing volleyball or softball. I was assured by my doctor that i would return to all of this within 6 months most likely. I played the odds and everyone is now sorry. I am a casualty of medical uncertainty.
I do not want to scare you, just help prepare you. Only you and your doctors know your specifics. Research every option and get a second opinion. I based my decision to have surgery on something my doctor actually said, that I was so active and such a go getter, that if I didn't have the tumor removed, that I probably would worry and not be satisfied. It made sense to me then, now I feel like a fool!
Please contact me if you have any specific questions I can help with.
Best of Luck in your decsion - Take the Vacation unless the doctor says you can not wait!!!!!
Debbie