Newbie introduction

[nancyann]

Hi oHIo:  This was my 3rd (benign) & worst tumor - thought it wasn't a big deal either after having 2 others removed.    Take your time in making your decision - wish I had.  But I thought, piece of cake, another surgery....    Look for the best in this business whatever you decide, radiation or surgery.    Positive thoughts always,  Nancy

[deea]

Welcome from a neighbor to the north...Michigan!  Actually, we lived in Columbus while my husband was in school and my first child was born at OS Hosp.  Quite the rivalery in those days.

Sorry you are dealiing with the dizziness.  Been there, done that.  Much better since surg. on Aug. 17th.   As has been said...GREAT bunch of people here.  Seems like we have quite a few people with some type of medical background.   Maybe AN's are contagious!

Claudia

[rmcgurran]

Everyone out there,

Thank you for being kind, caring, active members of this list and making a scarey thing a heck of a lot less scarey for all of us newbies.


Hi OHIo,

I'm new to the list also.  I've been lurking for a couple weeks but have said little.  I'm curious as to why you're thinking surgery and wondering if I should go that route as well.  My AN is 2 cm and I've been planning on jumping on the GK wagon.  With GK there's a swelling scare and the damage the swelling might do.  With surgery there's the being knocked out thing and the fact that it's invasive.  Neither is a fun option, but I haven't learned of any other options.  If anyone knows of any other viable options, don't hesitate to speak up.


Robbie

[cookiesecond]

Hi oHIo and welcome. As you know by now if you have to have one of theses "things", This group is a great place to be.
I felt the deciding on which treatment was the hardest! After I decided(I had surgery) Things fell into place and I could breathe a little.I pray you will soon have a plan and be on your way to becoming a postie.
Take care and keep in touch,
Lynn

[Lorenzo]

Oh HI OHIo,  (I like your name on this, being a designer and typographer it appeals!  )  I've never been to Ohio, too far away from Ireland. Sounds good though, just like here, LOTS of rain. Welcome to the club anyway, hope you'll find your way around this AN thing and that the vertigo resolves soon. Should do... he says... Whatever option you go for, take your time if you can and go for the one that feels right.

Robbie, I think that swelling after radiation is really only an issue when the tumour is large; at 20mm you're well within the treshold. The limit for rads used to be around 25 to 30mm, depending on the docs. Mine was 26mm at the time I had CK, swelled 10 - 15% for a while, now shrank back. Swelling did increase tinnitus, gave me some pain behind the ear and I lost 5% extra hearing. All that is now back to 'normal'. At 20mm it might not be too much of a consideration. Depending where your AN is exactly of course.

Good luck you two.

Ciao, Lorenzo

[sgerrard]

Hi OHIo, if you want rain, come to Portland OR. We always have some in stock.   Hi to Robbie, as well.

I think the state of the balance nerve, especially if you are having real vertigo spells, not just walking a little wobbly, is a big factor in choosing surgery vs radiation. It would also be a good reason in my book for not watching and waiting any longer. I believe Dr. Chang at Stanford has been quoted more than once as saying that if the balance nerve is no good, you should do surgery, not radiation. For Robbie, though, it is a good option, especially if you have still have useable hearing.

Radiation mainly stops the tumor in its tracks, but doesn't remove it, and doesn't fix problems with the balance nerve. Surgery can fix those problems, mainly by simply disconnecting the balance nerve on the affected side. It takes a bit of time to readjust to having just one working balance nerve, but by most accounts, it seems to work out well enough. It isn't a great fix, but it would sure beat having periodic vertigo attacks.

So see what the doctors have to say, and take enough time to get a clear picture of your options, and who might do your procedure. And drop in on this forum from time to time. Best wishes,

Steve

[oHIo]

Thanks Steve for your input.  The last 48 hours flat on my back from true vertigo has made me reconsider watching and waiting.  The dizziness, which I always have, is annyoying.  The vertigo, which is the third attack since February, is disabling.  The steroids have helped me feel better, but I am certainly not back to baseline. I am considering surgery over radiation for the reasons you mentioned. 

I see the doctor again the end of the month.  I am getting multiple opinions regarding surgery and hope to feel comfortable with whatever decision I make prior to proceeding with any treatment. 

Send the rainclouds east, please. 

[leapyrtwins]

oHIo -

unlike you, I had no idea what an AN was until I was diagnosed.  Like you, I figured I'd do the surgery one day and be back to work in a day or two.  Wrong.  My neurotologist stressed that I was looking at 4-6 weeks of recovery and he was absolutely right.  If you decide to go with surgery (my choice, but not for everyone), make sure you give yourself enough time to recover properly. 

Jan

[Brendalu]

oHio,
Welcome to our "little" but ever growing group! I have lots of relatives in Cleveland area and Columbus and although I now live in the great State of Texas, am from the southwestern corner of New York State. 
Really do a lot of research before you consider any of the treatments.  I am twenty-six months out from translab surgery and still have vertigo and severe balance issues.  Everyone is different and has different issues after each type of treatment.  We all respond differently to meds, PT and the like. Some of us have developed post op headaches.  Some doctors consider them migraines other cluster headaches.  Still other dismiss them.  Some of us have very severe debilitating headaches.
All I am really trying to say is get all of the information you possible can and weigh the pros and cons of each.  Take your time and get a couple of different opinions from top docs.  You are in my thoughts and prayers.
Brendalu

[Patch]

Hi ohio


   I grew up in Elyria and now live in Columbus, I can tell you, its a different story when you compare the Columbus area to the Cleveland area. Its so much nicer and looks a whole lot better. When we go back home to visit, we can't beleive the difference. Trashy Elyria and beautiful Columbus. WOW!!!!!!.

   Mark  Ohio

[lori78]

Ugh Ohio, I hear you on the vertigo.  I had 'inner ear infections' with vertigo that had me so physically ill for nearly a year before my doc put it all together.  Imagine my surprise.  I know hearing issues are a pain, but the whole tripping over everything.  UGh!  I even pulled out my shoulder recently because I'm too used to moving too fast.  Welcome and good luck to you! Thanks for coming out of hiding.  Your words help us as much as us helping  you!

[Sue]

Hello oHIo!

Thought I'd better join in and welcome you also to The Club.  My mother was from Trumbull County, Ohio. I do genealogy, so I feel like I've been to Ohio, when in fact...no I haven't. 

I do wish you the best of luck with your treatment and recovery.  Everyone has a little bit different story of what they went through and how their recovery went. Some are slow and slower, some folks bounce right back and never look back. Some have residual problems that are truly life changing.  It's terrible not knowing how you will come out of the treatments - great or not so great.  A highly experienced surgical team is important.  At least that's what the members who had surgery will tell you.  I was gently led to the radiosurgical route and had GK to kill my AN. 


Kindest regards,

Sue in Vancouver WA  USA

[Gennysmom]

Late as usual for the bandwagon...

Hi oHIo!  my contribution is this, as I feel very strongly about it....do what your gut is telling you, whatever in the long run you are comfortable with.  I didn't have a choice, but then again I don't know if I'd have the intestinal fortitude to zap it and wait possibly years for necrosis.  Others don't feel comfortable with the whole craniotomy idea.  Take it slow, think it through, and do what's right for YOU.   Just know we learned at the Symposium that the threshold for possible facial nerve issues is 1.8cm, and the average growth is 1-2 mm a year....so there's lots of time, but you might want to think about making a choice in the next year or so depending on growth to help out with facial nerve risk.  I hope that made sense, for goodness sakes you ARE listening to a blonde with a hole in her head!   

Good luck!  Kathleen

[oHIo]

Again, profound thanks to all of my new friends.  From many of your encounters with Ohio, it seems like it truly is the "heart of it all".  (Sorry, I took that from an old state slogan.)  I think our new slogan should be the "state of confusion". 

I am feeling better able to continue my AN journey after the recent episode of vertigo.  The steroids and other meds helped and the call by my neurotologists office requesting to see me urgently to do a hearing evaluation, was reassuring.  My hearing discrimination is still 100% in my AN ear with only a slight sensorineural hearing loss.  My case is going to be presented at an audiology meeting because the tech said no one would ever be able to guess my diagnosis based on my hearing test and presenting symptoms.  One would lean toward a Meniere's diagnosis, if not for the glaring tumor on the MRI.  Lucky me

One opinion recommends a MCF/RS combined approach due to the tumor location, if I decide to try hearing sparing.  I hate to give up pretty good hearing, but also know a combined approach carries more risk of complications and about a 50% chance of saving hearing.  Decisions, decisions. 

Thanks again for all of your support.

[sgerrard]

My hearing discrimination is still 100% in my AN ear with only a slight sensorineural hearing loss. 

One opinion recommends a MCF/RS combined approach due to the tumor location, if I decide to try hearing sparing.  I hate to give up pretty good hearing, but also know a combined approach carries more risk of complications and about a 50% chance of saving hearing. 

I like the idea of the surgery/radiation combo. I think Jim Scott on this forum has had a good experience with it. Middle fossa is a good approach for preserving hearing, but does have trouble when the tumor extends inward out of the IAC. Leaving some, rather than risking facial nerve damage or other trouble, makes sense to me. My impression is that small partial tumors left behind on facial nerves respond well to radiation without much risk to the nerve.

If it were me, I would want a surgeon who had done middle fossa many times. The more they can minimize the time the brain is retracted, the better the result for the patient. The House Clinic in LA, for instance, makes a point of how much they have reduced brain retraction time in middle fossa. Then I would do CK radiation on the remainder, since CK is not all in one shot, and has high precision in placing the beams. If all goes to plan, the pesky balance nerve gets snipped out with the bulk of the tumor, the hearing nerve remains intact, and the remaining tumor shrivels away after the zaps, without any tweaking of the facial nerve.

I'm not so sure that the complication risk is really higher, and that the chance of saving hearing is not higher than 50%. I am curious what risks they see in it, what other choices you are considering, and what other opinions you are getting.

Oh, and we had sunshine today in Portland. Sure, there was a short sprinkle of rain even when the sun was out, but it was a nice October day.

Steve