ANA Discussion Forum
General Category => AN Issues => Topic started by: oHIo on October 04, 2007, 09:40:37 pm
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Hello everyone. I’ve finally decided to come out of hiding and introduce myself. I starting lurking on this discussion forum at the end of June when I was diagnosed with a 1.8cm AN extending from my right IAC to my CP angle. Symptoms that led to my diagnosis were two episodes, four months apart, of disabling vertigo that put me flat on my back for five days. After the second episode, my balance never fully recovered. An ENT noted a small sensorineural hearing loss in my right ear but 100% speech discrimination. I am going to vestibular rehab to help with the balance issues.
I am in the watch and wait mode while I explore surgical options, get multiple opinions, and come to a decision that I can live with if things do not go well. My fears are compounded by the fact that I am a pediatric neurology nurse who knows that no option is without potential risk.
I feel that I already know many of you as I have read and reread every post on this board. Today I am finally ready to be an official member of “the club�.
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Welcome aboard oHIo,
Given your extensive research, the watch and ait mode (same as me) is not a bad option. A 1.8cm AN is still "under the threshhold" of all options being available to you. Only if your everyday life is affected would you have to choose something. These things don't grow that rapidy and if you can avoid surgery or radiation treatment, then do so.
cheers
Laz
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Welcome Ohio, I was born and raised in Batavia, Ohio which is about 30 miles East of downtown Cincinnati. If you have questions, we all speak your language. :)
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Hi oHIo, dont sweat any kind of surgery,believe it or not,
that is the easy part.
It sounds like you have some issues with this,but at 1.8 cm I would worry , simply knowing it's there
is enough to drive you crazy in itself.
WE ARE HERE FOR YOU.
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Thanks everyone. Once the initial shock was over, I am starting to not like any treatment option. I am having constant dizziness (thank goodness no more vertigo) and tinnitus, but I know they both may be present after removal. I'm trying to pretent they don't exist. Do you think wishing will make my tumor go away ;)
Boppie, I'm in Amelia..grew up around the Eastgate area. Batavia...our county seat. Small world.
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oHIo -
hello and welcome to the forum.
I personally can't speak for radiation or watch-and-wait, but as Satman said, surgery isn't that bad; afterall, you are asleep LOL
I'm not a nurse, but I work for a national association of nurses (anesthetists, to be exact) and I found them a wonderful source of information when it came time to chose my treatment option. In addition to my doctor, my collegues were very helpful in telling me what I could expect from each possible procedure.
I'm a little over 4 months post-op and doing fine. I have a few issues, but nothing that I can't live with; you learn to adapt.
Whatever treatment option you chose, please know that we are here for you. ANs kind of suck, but this forum is a great place to be.
Jan
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Greetings oHio.
We come from everywhere and welcome everyone. The people here are wonderful, supportive and have a tremendous amount of information about everything AN's to pirate ships. Life is a journey and we are gald to help with yours. We are always here!
Mary
2cm Middle Fossa, HEI, Dr. Brackmann, 05-24-05
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I'm from oHIo too, near Cleveland. My presenting symptom was constant dizziness, my AN was over 4 cm and surgery was my only option. I can tell you that the dizziness was gone after surgery. My dizziness got so bad that I ate very little and laid down most of the time, which is hard to do when you're a mom of 3 little ones.
Welcome to our club and stay strong.......
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Welcome Ohio
Sorry for the reason you have became one of us- but so glad to have you aboard. You will find here a wonderful group of caring people -in the forum (this has been my experience since I came on the “AN journey ship� in June 07)
“a pediatric neurology nurse�… oh boy now we someone to help us put those medical papers terms into layman’s language. Eg “optical ointment� in one postie’s terms (AKA Adrian) is called “goop� (personally I think “gooped up� is perfect description of post op eye issues treatment)
Welcome aboard the AN ship. The journey is never dull here … sometimes you may get a little motion sickness but there are lots of great people here to support you through the rougher seas.
Welcome! :)
“4�
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Hello oHIo,
My Mom was from Ohio, and I can remember my Dad used to kid her and say"Ohoho". May I also send geetings your way, all the way from Portland Oregon. I totally agree with you none of the options are appealing to me either, so I am in the "watch and wait" mode, with the hopes, symptoms continue as is and don't change, and that "miracle of miracles" appears soon! Ahhhh tis nice to dream, huh? Realistically speaking, though, if your symptoms are manageable and your AN is small enough, why not take time to study your options??
Jackie
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Hi, Ohio:
Allow me to add my welcome and to admit that my only connection to the state of Ohio is that I drove through it on the way to California a long time ago and still recall driving in a torrential rainstorm, somewhere around Springfield, that was so forceful, I couldn't see past the hood of my car but I couldn't stop or pull over because I couldn't see anything. Anyway, I obviously survived and whenever I'm caught out in a hard rain, I still remember that wall of white rain that I drove through in Ohio, all those years ago. O.K., it isn't much but it's all I have. ;)
At 1.8 cm, your AN is small enough to allow options being available to you. With your medical background and connections with other medical professionals, I'm sure you'll come to a sound decision regarding treatment. Unfortunately, no AN treatment can be guaranteed to be free of possible post-op complications, as you know. That is the hard part of having one of these things. The good news is that surgery and radiation techniques have improved drastically in the last few years and AN patients now have a better chance of coming though surgery and/or radiation without the problems AN patients often had to endure, previously. I know because I'm one of them. :)
Jim
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Jim also stayed at a holiday inn once.
Sorry I could'nt help myself,ha,ha
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Jim..would you consider driving through Ohio again? We have had a terrible drought this year and desperately need some rain. ;D
4cm..optical=eye ointment=greasy goop that prevents you from seeing ;D
I spoke too soon about no further vertigo. Friday morning at 5am I woke up to the familiar 'can't figure out which end is up and whether it is me or the room spinning...or both.' A call to the neurotologist, steroids, valium and phenergan have allowed me to be able to sit semi reclining as long as I don't move my body or my head. I could live forever with the other symptoms but the vertigo is going to force me to make a treatment decision. I see the doctor again at the end of the month.
Thanks again for the warm welcome.
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Welcome aboard oHIo and I am glad you decided to appear!
I truly am sorry you ended up with an AN. Had you ever heard of this invader before you were diagnosed with one? There is a physician on here that had never diagnosed an AN then, ended up with one himself. No one knows what the darn thing is until they or a loved one ends up with one.
Hang in there and good luck, Kathy
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Obita I had heard the term acoustic neuroma but I really had no idea what it was. When I was told (by the office nurse since the MD was out until the end of the week) that I had an acoustic neuroma, I was thinking okay, acoustic=hearing neuroma=tumor. I have a tumor inside my ear. Okay, as long as I can have surgery on Friday and be back at work on Monday...not a problem. Imagine my shock when I realized a craniotomy was involved :o Forget outpatient surgery.
Unfortunately, part of my decision when to have surgery...and I believe that is the option I am leaning toward...is based on time I can get off work. I had major lung surgery last December, also for a benign tumor. I'm not sure what's up with me and the benign tumor thing, but I can certainly think of better ways to get time off from work. A vacation would be nice.
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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
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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
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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, :-X
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
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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
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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
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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
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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. :)
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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
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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
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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
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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!
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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
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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! ;D
Good luck! Kathleen
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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.
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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
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Ohio-How are ya? What's happening? Just checkin' on ya, Yvette
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Steve...thanks for the info. I am sending my MRI and hearing report to House and am also looking locally for another opinion. I really do not want radiation of any kind. Just personal objections, not scientific. I guess my thought also about having surgery, then having to have radiation is that I if I am going to go to the trouble of having surgery, I want it to take care of the tumor without knowing I am going to have to have further treatment to finish the tumor off. I know there are always exceptions to the rule but I don't want to go into surgery knowing this is the first of two parts to get rid of it. I seem to have an affinity for growing benign tumors in serious places and fear purposely leaving in part of the tumor, even with radiation, might come back to bite me in the end.
I guess if I already had some hearing loss, I'd be open to a translab without blinking. But true to me not doing anything "textbook" my hearing isn't the issue. That is where I am stuck. The good thing is that I have time to make a decision and further explore my options. I've been known to change my mind before, so nothing is out of the realm of possibilities. That is why I am continuing to obsessively research my options and try to figure out what option I can best live with.