Yet another newbie

[leapyrtwins]

Cool.

Wonder if the book under his seat is one of his? 

Jan

[fbarbera]

Hey Ernie,  Looks like you've gotten lots of amazing advice so far.  The first neuro I saw after diagnosis told me radiation was not an option for me due to the location of my tumor.  It was only when I saw a neuro with experience treating ANs with GK/CK that I learned these were perfectly good and reasonable options in my case, along with surgery.  If you are interested, in my website below, I have recounted in detail the process I went through of researching treatment alternatives (surgery/GK/CK) and how after consultations and research I ultimately came to choose CK for my Acoustic.   Hope it is helpful and hope you are doing well.
Take care,
Francesco

[EJTampa]

Hello Francsco!
 
Wow!  I just spent the last 45 minutes reading your 1+ year journey through AN treatment!  I must say, I have been leaning toward CK based soley on information obtained from the net, but would never make the final decision without talking to doctors.  If you've read my story, you can probably tell I'm basically W&W until January, so I can attend my Niece's wedding cruise without adverse surgical or radiation effects.
 
Your story actually scares me a bit, to be honest.  I keep telling myself that my tumor is small, so my recovery time will be short, but I also know I'm just fooling myself.  Don't get me wrong, I think the improvements you've seen in one year are right in line with what I've read, but I keep focusing on the "quick recovery" stories that I find . 
 
In any case, I feel it's best to have an optimistic outlook, but a guarded one at that.  It's important that I be realistic.  My job is such that I could safely take 4 to 6 weeks off without worry of losing my job or pay, but it would be more troubling to have to take off work at continued intervals over a one or two year period.  You have given me much to think about, and I hope you will continue to update your page, which I have book marked for future reference!
 
One thing I've always wanted to do before I expire is to hang glide off a rocky cliff down to a sandy beach.  I'm thinking now that I should do that before I get treated .
 
Ernie

[Tamara]

Hey Ernie,
  One thing to keep in mind is that the vast majority of AN patients do not participate on this forum.  Most of them just go back to their lives. While there are quite a few here whose treatment was uneventful, I think it's safe to say that most of the folks are here because they're having problems or concerns. So we have a group who may not be representative of AN posties.  I had surgery 4 months ago, and even had some major bumps in the road afterward, but all in all felt 90% recovered by 3 months or so.  I just have a bit of residual facial palsy, but that is resolving too.  If I had the desire to hang glide, I'm sure I could manage it no problem - I began bicycling again after about 2 1/2 months.  I guess what I'm saying is that while you should be prepared for the worst (always a good practice), you will likely be pleasantly surprised, no matter what treatment option you choose.

Best wishes,
Tammy

[leapyrtwins]

Excellent point, Tamara.

Lots of AN patients join us as newbies and then don't participate much after their treatment is completed. 

Jan

[pauline]

Ernie,

Hey  - I really feel for you with the loud tinnitus!  Mine is extremely loud also - it is very
annoying - especially as my job is listening!  Although I rarely post, I read this site a lot
and I learn new things things!   Much luck to you! 

Paula

[EJTampa]

Thanks Paula.  I see you are in the watch and wait arena too.  I've been going back and forth between surgery and radiation, but I'm beginning to think surgery would have the best shot of saving hearing and possibly reducing the tinnitus.
 
Tammy and Jan, yes, I was wondering the same thing about the posters here.  It makes sense that those with few, if any, lasting affects would be least likely to hang out in the forums.  I suppose the same could happen with me, although I will absolutely let everyone know how things turn out when I do decide on treatment.
 
I'm really enjoying the company here, so I expect to be a long term poster.
 
Ernie

[sher]

Hi Ernie,
My AN was close to your size.. I was told by a Dr. at Barrows that it is important to determine growth rate. So I had another MRI at about 3 1/2 months and mine had grown by about 30%. Thus watch and wait was not an option for me. I was considering waiting as it was small.. but the booger grew in 3 months so I did CK 2 weeks ago and am doing pretty well.
Some dizziness as before and I felt flu-ish the first couple of days after, but so far not unmanageable side effects. Good Luck in your decision making process. For me, I wanted to try CK first and then have surgery as an option down the road if needed. But I am optimistic that BIG ROBOT EYE... did the trick. Let me know if I can answer any questions....
hang in,
Sherry

[bell]

Hi Ernie, I also am  a new An patient.  My tumor is 1.4 x 1.0.  I have known since July and I finally made an appointment to have surgery Nov. 21st at the Mayo Clinic, MN.  Process Retrosigmoid.  I have only lost a little hearing, also have ringing, and slightly off balance.  Some hearing should be preserved and hopefully no facial disfunction.  But..there is no guarantee until after surgery.  I am excited to have the surgery and get on with life.  It was a very hard decision but I want it out..  Good luck with your decision, do alot of research.
Bell

[mema]

Hi Ernie,

Sorry you have to join our group.  Living in the Tampa Bay area, Dr. Bartels was the first surgeon I saw.  If I had decided on surgery I would have had Dr. Bartels do it.  I chose radiation, at MD Anderson  in Orlando.  I do think you can opt for wait and watch until you decide on surgery or radiation.
OK , I'm a Tampa Bay sports fanatic.  Go BUCS...Go LIGHTNING...Go RAYS... But as a child my dad and grandmother took me faithfully to the Phillies at Connie Mack stadium.  So this will be some series for me.



mema

[EJTampa]

Thanks Bell and Mema.  I am only waiting so I don't have sympotoms for my Nieces wedding cruise in January.  I will certainly look into Dr. Bartels as well as others out of state.  My insurance is pretty good, BCBS Federal, so I'm hopeful I won't have too many problems in that arena.
 
Bell, I see your surgery is coming up next month.  Our situations sound pretty similar, Tinnitus, some hearing loss, and some balance issues, but I know every tumor is different.  I wish you luck with your surgery and be sure to keep us informed!
 
Mema, since my Red Sox are down now, I'll join you in wishing the Rays well .  Can you tell me how things went with the radiation in Orlando?  Maybe I can find it by searching .
 
Thanks for posting,
 
Ernie

[EJTampa]

Hello again fellow ANers,
 
Did anyone ever have an increase in neck pain with their AN?  For the last week now, maybe longer, I've had some pretty severe muscle pain on the AN side, and just behind the ear.  If I swallow with my head turned at all, I get a sharp pain that feels like it's in the center of the ear.  I know, you guys are not doctors and I should seek a professional opinion and all that other stuff you have to say .  I was wondering if anyone ever had that, though, and if it was a symptom of the AN.
 
On the bright side, I've been taking Ibuprofen, and that is controlling the stiffness and the pain very well.  My already very loud tinnitus has stepped up a notch, which is discouraging since that's one part of the AN we get to keep for life.  I can still hear well out of the AN ear, as I have only lost the high frequency sounds.  I still use that ear for my phone conversations and such.
 
Anyway, just figured I'd post my newest issues, and let you know that I haven't fallen off the face of the earth.  When I have a surgery date set, I will let you all know for sure.
 
Ernie

[Omaschwannoma]

Your pain in the neck while swallowing is pretty normal for those with this tumor, but I cannot explain why this happens.  Most have neck/shoulder issues that dissipate once treatment is over.  Gentle stretching does help keep the muscles supple allowing blood to flow freely through the tissue decreasing pain. 

It is very possible your tinnitus will decrease once you have the surgery, until then welcome this annoyance rather than trying to reject it.  The more we reject the tumor issues the bigger they become--this goes for post treatment too.  These issues annoy us to no end until we acknowledge them where the symptoms decrease to an acceptable level or even go away--too bad this doesn't work for the tumor itself! 

Deep breaths, eyes closed, no thoughts--peace!

[Patti]

just to give you hope-my tinnitus was a symptome before surgery and got better after an eventful surgery.  i also had terrible headaches and occassional vomiting (which is why i went to the doctor) that have gone away since surgery.  i do get occassional headaches, but find releif by cranio-sacral therapy (which btw is very helpful for neck pain)  best of luck to you.  patti