ANA Discussion Forum
General Category => AN Issues => Topic started by: neuroma_racer on December 27, 2009, 10:13:51 pm
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howdy all,
please excuse my long-windedness.
first, thanks for this forum. i have been noodling around here, this evening, and have come across a lot of good food for thought. this is a really well-laid-out forum, as far as topic/sub-forums go.
congratulations on a job well done. i look forward to reading and RE-reading much, much more here. everyone here seems to be very supportive of one another, thanks in advance.
a little about my course:
i am 38. (for another month and a half), and have just been diagnosed this tuesday before christmas, after about three weeks of symptoms. i developed a constant tinnitus (mild, i guess), and some mild hearing diminution, friday morning 12/04/09, while readying myself for work that morning.
i saw an ENT M.D. monday, 3 days later. audiology revealed 20 dB hearing loss in the higher frequencies. we tried about a week's worth of prednisone, which was ineffectual. so we then did an MRI with and without contrast, which was positive, as below in my signature.
funny thing is, i kinda new the MRI was positive when i was leaving. i mentioned to the technologist i thought i had moved a millimeter (or two) during one scanning phase, and i was curious if they saw any motion artifact. he replied, "no, we got a diagnostic scan" (not a good phrase to hear), and then as i was about to walk out - he asked when my ENT would get the results, and i responded i would see him the next day, to go over it. so taken together i knew it showed something. i had just worked a 12 hour night shift, preceding the scan, and was too tired to look, or press for details, but in my gut i knew it wasnt good.
i am scheduled for ABRs next week, and will undergo ENG in early january, unless there is a cancellation this week.
my ENT is arranging for me to be seen by an otologist, Dr McElveen, from raleigh, n.c. (4 hours away) who comes here to greenville, s.c., once a month, to operate and see patients. not yet sure when in january this will be.
at my request, i will be getting, at a minimum, a 2nd opinion from another otologist, in columbia, s.c. (1.5 hrs away) (Dr Thomas?, i think?)
3rd, 4th, 5th opinions to be sought as needed, i think dr fukushima at duke, (4 hours away, but doesN'T come here) would be next.
a little about me:
i am an emergency medicine physician, this makes me a bit more "connected", and has helped with the expedited course of my workup. while it also gave me a head start on some of the broader details of what i am dealing with, it doesn't make the decisions any easier.
i am a husband of 10 years, and father to a 7, 5, 3 year old. in decent health except for being out of shape / a little overweight.
my passion is grassroots level car racing, into which i have been delving, for the last two years, so i am actually JUST NOW getting to the competition levels. i have about 45 days on track under my belt, in various ford mustangs. and many more laps to go, i hope.
my concerns:
while obviously, i want it all (hearing preservation, facial nerve function, and enough vestibular sense to continue racing) i guess i have to rank-order those 2nd, 1st, and 3rd, in importance, respectively.
my quandries:
lots of what goes through my mind,for now, is just conjecture, based on what i know, have recently read, and learned from my ENT. things will hopefully be much better delineated once i see a couple of otologists.
i was reading this article from emedicine.com (http://emedicine.medscape.com/article/882876-overview) about 5 minutes after listening to the dictation of my MRI, and confirming my suspicions of my diagnosis.
as i was reading the downsides of each of the three different surgical approaches, i thought well, i dont want that one, or THAT one, OR that one either!! -- kinda depressing, as none sound great.
some of my questions:
(1a) to what degree do neurotologists (being sub-sub specialized surgeons, afterall) tend to generally always recommend surgery, instead of radiation?
(1b) conversely, to what degree to radiation types, always recommend gamma knife, or linear accelerator therapy, since that is what THEY do, instead of a scalpel?
(1c) the reason i ask these first, is because the article i cited above, made it seem (like an almost instant reflex) like "radiation isn't for me, i want surgery". the article was written by an ent surgeon, and a neurosurgeon. just wondering to what degree they preach that which they practice?, vs being able to recommend radiation, instead of the operating room, if that is what they really think would be better?
(2) ??? does SSD (which i see perhaps too frequently in people's signatures, here) stand for?
same sided deafness???
(i hope there is a better explanation for this acronym) :-\
if my ABR is normal, and ENG is ABnormal, then this tends to localize the tumor to the SUPERIOR vestibular nerve, which, since it is further removed from the cochlear nerve, chances of hearing preservation are better.
(3a) so my thought is the sooner i have surgery, the less hearing loss i will incur due to tumor progression, (slow as it my be) right? ???
and conversely . . .
if my ABR is normal, and ENG is ABnromal, localizing it to the INFERIOR vestibullar nerve, being closer to the cochlear nerve, hearing is more at risk. then
(3b) my thought is since hearing is more likely to get trashed . . . do i wait? postponing surgery as long as possible (?years?), enjoy the hearing (with tinnitus) while it lasts? ???
(4) does surgery inherently disrupt vestibular input, into the balance/walking/driving equation? are ALL the vestibular nerves on the affected side cut? just some?
(5a) for a middle fossa approach, what is an average "back to full work" time?
as with everything, i realize the answer is "it depends",
my ENT said he thought i'd be in the hospital 3-4 days (1st night in icu), and back to work in the e.r. in 7-10 days.
conversely, i know of an executive, wh0o essentially has a desk job, and he was told 8-10 weeks to go back to work.
in addition to being fast-paced, fatiguing, and very mentally demanding, my work can be pretty physically demanding as well, (suturing, incision and drainages, relocating dislocated joints, applying casts and splints, inserting breathing and occasionally chest tubes, etc.) these are fairly dextrous procedures.
(5b) to what degree does the vestibular defecits after surgery take a toll on dexterity, hand eye coordination? vs just problems with ambulation, position sense, driving?
i typed the above, this afternoon, but hadn't posted it yet, due to wanting to proof-read it.
as a late addition, i have added the below, after a phone call 2 hours ago.
being the impatient type, i phoned a local neurosurgeon acquaintance/friend, as a 'curbside consult'.
to my surprise and delight, when i asked if anyone in his group of 6-7 surgeons worked on these, (my goal was really to just bounce some ideas off of him) . . . he responded that these are HIS specialty.
he is going to look at my scan and i am going to meet with him before his tumor clinic on thursday.
he feels, (without having seen my scan yet), that for this small of an AN, (4mm x 7mm), and based on it being located COMPLETELY in the internal auditory canal, . . . that radiation therapy, or perhaps stereotactic surgery would be the way to go.
he kinda addressed 1a, and (1b) above, indicating that if i spoke to certain dr's they would say i was crazy to consider radiation, and that i should get it cut out. he, himself is involved with the radiotherapies, and stereotactic surgeries here, . . . and seems to think i'd be crazy to undergo the surgical risks, for such a small benign tumor.
i feel totally adrift, right now. i am reading as much as i can. it seems every time i talk to someone new, or read something else, i feel new ups and downs. as a physician, i know there is little black and white, everything is shades of gray. everything has pro's and con's, everything "depends", and none of us have a crystal ball.
i am a pretty empathetic type, with my patients. it is weird being on this side of the diagnosis, as objectivity is diminished.
it has been something of an emotional roller coaster, this week. it also seems difficult at times to keep perspective, it isn't cancer after all. worst case scenario is that i go deaf in one ear, have a facial palsy, sell my race car, and get a new hobby.
i think i am probably really starting to ramble now, so if anyone is still there, thanks for sticking with me, through this stream of consciousness.
jesse
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WHEW! I made it thru ALL of that! ;)
WELCOME!
This is group that I know that you don't want to be part of, but if you have an AN, this is the place to be! Many Dr's are VERY PARTIAL to what they do so if you can find one that does radiation &/OR surgery, you might get a better answer! I will just try to answer a couple of your questions and let someone else answer the others. You were close with SSD - it is Single Sided Deafness - I'd been that way for 12 years before I ever knew that & even after I finally found this Forum - I still thought it was something else! ;D Yes, it is NOT what you would WANT, but I find it not so bad. Others find it more bothersome, but there are many things out there now (BAHA or TransEar) to help with that - they weren't available when I had surgery (translab - 14 yrs ago - I was 25) so I just pretty much adjusted. #5a - I think, especially with your job, that 7-10 days is VERY, VERY optimistic! Jan (leapyrtwins) had a GREAT recovery and was back at work at 2 weeks 1/2 days at her DESK JOB...
Please feel free to ask any questions (guess you did!) or PM me if I can help you in any way!
K ;D
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jesse -
there's a lot to digest in your post, so I'll just hit on a few things that stand out in my mind.
With an AN your size (small) you have basically 3 options: 1) watch & wait - most ANs are very slow growing, 2) radiation, or 3) surgery. Location may have some bearing on this. As you suspect, if you wait to get treatment, your hearing may get worse, but that may take many, many years. We have folks on the Forum who have been watching and waiting for a fairly long period of time.
My doc is a neurotologist and he does both surgery and radiation (GK), but you are correct. Some docs "push" the treatment they offer, so make sure you get a well-rounded opinion or opinions. The ANA has some excellent literature that you should request; in my opinion, much better than the stuff you're reading on emedicine.com
Of the doctors you listed, I have heard of the one @ Duke. But then again, I'm in Illinois and I'm not 100% familiar with doctors in your area.
SSD (single-sided deafness) isn't the end of the world. Lots of patients adjust to it; those of us who don't get BAHAs or TransEars. I'm a die-hard BAHA user myself ;D
Surgery will damage your vestibular nerve, but your body learns to compensate and your balance will get back to normal for the most part. We have many Forumites who run marathons, ride bicycles, participate in standup paddleboarding, etc.
Most docs will tell you that surgery, regardless of the approach, generally means 4-7 days in the hospital and 6 weeks recovery - but every patient is unique and these are just general paramenters. As Kaybo mentioned, I had a great recovery and returned to my desk job part-time @ 2 1/2 weeks post op and full-time @ 4 weeks. We've had people back posting on the Forum a week after their surgery. Everyone is different and everyone's AN journey is different.
If you think you want to have surgery, and your hearing is pretty decent, you should ask the docs you consult with if the mid-fossa approach would be a possibility for you. Of the three surgical approaches mid-fossa gives you the best chance of hearing preservation, followed by retrosigmoid, followed by translab.
On the other hand, with an AN as small as yours, radiation would be a very good choice.
You are the best person to make your treatment decision once you educate yourself. Treatment decisions are very personal decisions. We're here to support you in whatever choice you make.
Best,
Jan
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Hi Jesse,
Since you have been long winded, I will be brief. Get it zapped. :)
A little more commentary. The vestibular testing will reveal something about where the AN is, and may be a predictor of hearing preservation, though I am not sure it correlates all that well. More important, though, it appears that you do not presently have significant balance or dizziness issues. The one drawback of radiation treatment is that it generally doesn't affect the balance nerve one way or the other. Surgery, on the other hand, usually cuts the balance nerve on the AN side. After a period of adjustment, most people readjust to a single balance nerve quite well, though tight-rope walking is not a recommended occupation. If you have significant balance issues, surgery will do more to address that problem.
Your neurosurgeon friend is quite right, many surgeons tend to recommend surgery, and many radiation oncologists tend to recommend radiation treatment. Though we are often disappointed by that, we really shouldn't be surprised by it, and it is in the end your call, not theirs.
For a small AN, the chances of adverse side effects from stereotactic radiation treatment, i.e. Gammaknife or Cyberknife, are really quite small, and the chance of hearing preservation is pretty good. Unless you are having serious vertigo or dizziness, I would get a small AN like yours zapped. That's what I did, and I am very happy with that choice.
Welcome to the forum, and I hope to hear about your car racing escapades shortly. ;)
Steve
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The one drawback of radiation treatment is that it generally doesn't affect the balance nerve one way or the other.
how is that a drawback?
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The one drawback of radiation treatment is that it generally doesn't affect the balance nerve one way or the other.
how is that a drawback?
If you are having dizziness or vertigo problems before treatment, there is a significant chance that the problems would continue after radiation treatment, since the damaged balance nerve is still there and still damaged. Sometimes people do adjust afterwards, but sometimes it is difficult.
Steve
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Get it zapped. :)
I agree with Steve - but only if you are the type of person who can "live" with this option.
I had the option of radiation or surgery and chose surgery. I personally could not have lived my life worrying and wondering if the tumor inside of my head was dying or not. Every little twinge or headache would have made me second guess my decision. But then again I'm a worrier - and I'm very impatient.
I am also the type of person who just wanted the darn thing out of my head; end of story; let me get on with my life, etc. I wanted to know my side-effects upfront, not wait 12 to 18 months to see what I'd "get".
There were other factors that made me choose surgery over radiation; these are just a few.
Radiation is an excellent choice for some; surgery is an excellent choice for some; watch & wait is an excellent choice for some. To each his own ;D
Jan
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Hi Jesse,
Welcome to the forum, and I hope to hear about your car racing escapades shortly. ;)
Steve
thanks
here ya go:
these are two links to some posts and videos in my 2008 bullit edition mustang.
i have an instructor with me, as i am working my way up the drivers ed ladder.
to date i am about 2 seconds quickier with the same setup,
have been soloing for about 14-15 months,
just started time trial competion in november this year
(we arent really racing one another in driver's ed)
will be getting my instructor licensce in february,
and hope to be doing actual wheel to wheel racing by this summer ( as opposed to time trialing, where you are just trying for the single best lap-time in your class)
1st video, and still pics, and track map (http://www.imboc.com/forums/showthread.php?t=158291)
2nd and 3rd video (http://www.imboc.com/forums/showthread.php?t=159435)
in addition to carolina motorsports park, i also do a good bit at virginia international raceway, road atlanta, have been on lowes motor speedway, and will include robeling road in savanah, Ga, this year as well.
new race car, a 98 musstang cobra, is about 60% ready to go.
hope you enjoy the videos.
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The one drawback of radiation treatment is that it generally doesn't affect the balance nerve one way or the other.
how is that a drawback?
If you are having dizziness or vertigo problems before treatment, there is a significant chance that the problems would continue after radiation treatment, since the damaged balance nerve is still there and still damaged. Sometimes people do adjust afterwards, but sometimes it is difficult.
Steve
no vertigo, no dizziness, no issues pulling 1 G turns at 60+mph
top speed in the last video is abuot 118.
your note above seems to suggest that if i dont now, i probably wont later.
to be honest, part of me(undisclosed percentage) would rather be deaf in one ear, and still be able to smile, keep soup in my mouth, blink and race cars. ( than be vestibularly screwed up)
SSD could open a whole treasure trove of excuses for not doing stuff i dontr want to , (heh-heh)
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your note above seems to suggest that if i dont now, i probably wont later.
That was my experience, and the experience of others who had radiation for their AN.
I think it is fair to say that SSD is the least problematic of the possible outcomes. And yes, it sometimes even has advantages. :D
I have a friend who used to race Alfas. I really don't know that much about car racing, but from the videos, I would say you seem to be getting the hang of it. It certainly looks like fun.
Steve
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Well, let's see. You already engage in risky behavior, so I'm not sure what you're worried about. ;D
I had hoped to use FSR for my treatment one day and went carelessly down the W&W path. But, Wham-O, it doubled in size in the 7th year, so off to the OR.
You are very fortunate to have been diagnosed early and have plenty of time to consider your options and join this wonderful group of friends.
But, please don't encourage Steve to race cars. We need our hats! ::)
Steve, stick to knitting, please.
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funny thing is, i kinda new the MRI was positive when i was leaving. jesse
Hi Jesse and WELCOME! So sorry you had to join this exclusive club, but know that you are not alone.
The folks here are FANTASTIC, as you are finding out - so keep posting!
I am so happy your symptoms were not ignored and the docs took action quickly. Me, i would not be diagnosed if it were not for my sister's ENT!
Anyway, i had my MRI and then i waited and waited. Finally couldn't stand it anymore and retrieved the report. And oh, gee, guess what they found...
Now i am in W & W, didn't think i would like it, but it feels right at least for now. I have had one case of vertigo last January, seemed to last forever (maybe 1 minute!) and don't want to experience that on a regular basis. Over the last year, i have also learned that (as many others have said) you have to prioritize your goals of AN treatment then go with your 'gut instinct' and move on.
One thing i like right now is i feel more in control with the knowledge i have gained thru this forum.
Keep reading - but don't forget to take a break when you need it - there's ALOT of information to sift thru.
My thoughts and prayers are with you, wife & children, and your extended family.
Enjoy the new year and keep us posted on your progress.
Sincerely,
Sue
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Jesse .....
Just wanted to add my welcome to this forum. You have already had excellent replies to your interesting posts. I agree with Jan that the bottom line is whether you can handle having the AN remain in your skull following radiation as opposed to being removed during surgery. Hopefully it will shrink after radiation (although there is often a period of swelling first following radiation).
I also wanted to say Dr. Fukushima totally removed my 2.6 cm AN and I had excellent results and would highly recommend him if you choose to go that route. However, with an AN as small as yours, I would definitely consider radiation. As the others have said, most doctors have a preferred treatment for ANs and thus "push" their treatment. From the sounds of yours, you should have all options open to you. Hearing will not get better, in most cases, following treatment so from that standpoint it is the gauge for staying or not staying in wait and watch very long.
Send the for ANA-USA materials, they answer many of the questions you have ..... much better than the biased articles on the Internet.
Clarice
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Jesse, Your ENT doesn't have a clue about recovery from AN surgery! I am now a retired nurse from a smaller rural hospital and have NF2 so been thru 3 tumors and 4 surgeries. I was back to work in 2 months after all but my last surgery as had retired. That was 20 mo ago and am 57. I have had surgery on both sides and now no balance nerve on either side. You would have to be with me for a while to even see that as I do pretty good but have problems under certain conditions. You usually do recover well with the loss of only one nerve but it does take time for the body to compensate,esp with only having a small AN. One can adjust to being SSD. That varies with each person. The odds of if have some facial issues is that would be temporary. What the tumor is doing to the facial nerve is part of how it can be post op. I had no facial problem after my last surgery.
Just make sure if one has surgery to do it with a dr who does them on a frequent basis! I am in Iowa and lucky we have a neurotologist at Univ of Iowa who does. You do learn more of how a patient feels after going thru the AN journey.
Good luck and it is a hard decision to make about what is best for you! Cheryl R
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Hi, Jesse, welcome to the site! You've already received a good bit of advice/info, so I just wanted to say "hi" and let you know that my mom lives in Greenville, so I'm up that way periodically (I'm in Atl). I'll send you a PM with my phone number - feel free to give me a call. Also, at some point, if you'd like, you're more than welcome to come to Atl for our support group meeting. I don't think there is one in the Greenville area at this time. We also have a few docs in Atl who are AN savvy, if you want to venture down to GA for some treatment advice :D
You are in the toughest stage of this journey - the decision making process...it is tough, but once made, life goes on and usually quite fine!
Cindy
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Welcome Jesse,
Just chiming in. You are right on track, and ON TOP of everything.
If you need to just take a day or 2 off to breathe, the tumor ain't going anywhere.
With the small size of your AN, and minimal symptoms, I agree with Steve
ZAP IT
This is THE hardest part and just keep continue to do your homework.
Once you figure out what treatment, and who and where, and when you will feel TONS better.
Facial nerve damage usually only occurs with large tumors that have totally squashed everything.
Unfortunately, in my case, my tumor was not HUGE, just large. But the symptoms were so insidious and slow, that I just ignored them for YEARS.
The docs mentioned it should have come out 5-10 years ago.
SO you will ACE this thing, I am certain, and be able to do just what you are doing now.
Hang in there. ;)
Maureen
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THAT RED block should read
ZAP IT!!!!!!!!!
Maureen
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Welcome Jesse!
I enjoyed your post as I had all of the same feelings and concerns. Most people I spoke with prior to this forum didn't really want to discuss all of the details of my tumour, the surgery or the possible complications. It is too overwhelming for some and I found that most people just wanted to know that I was going to be okay.
I love the fact that I can discuss 'trivial things' (not my words my spouses ,as he is happy I am alive) that concern me and get the reassurance and information that I may need have been so valuable. There are times that I need to know that I am not alone and I just go to the forum - 24/7.
I researched like crazy and I am not a doctor but a primary teacher but needed to arm myself with as much information as I could get my hands on. Saying that even with all of the research I did and talked to many doctors I have learned more from people who have experienced this tumour.
Knowledge is power and getting it from many sources will be beneficial!
Cyber Hug
Michelle ;D
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Hi, Jesse - and welcome.
Although you've posed a lot of pertinent questions, you've already received some cogent replies so I'll simply extend a sincere welcome and my appreciation for your preparedness and logical, realistic approach to dealing with your AN.
Radiation seems to be the more 'attractive' option for you but of course, that remains to be seen. The many AN-experienced folks that have and will continue to offer you advice and suggestions based on their real-world experience should be beneficial to your decision process. We aren't physicians but collectively, we have a wide rage of practical experience in dealing with these small-but-challenging tumors. Our members are willing, even eager to share that experience with a goal of helping you make a treatment decision that is best for you, in your situation. You're definitely among friends here, Jesse. Friends that understand and can truly empathize with what you're going through because they've been in your shoes. I hope you'll continue to consider the ANA website and these forums as a resource.
Jim
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Welcome Jesse and I think that being a physician makes things harder for you....You know too much! Trust your instincts. My tumor was there for 10-15 YEARS before it was discovered. Looking back I see all the symptoms but it wasn't until 4 months before surgery that I had facial numbness and dizziness. It was 4 cm btw.
Research your options and pick the most optimal for you. Best of luck to you...
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HI JESSE,
I TO AM A NEWBIE HERE I WAS DIAGNOSED IN NOVEMBER 09. MY AN IS SMALL ONLY 4MM. I HAVE TO SAY AFTER FINDING THIS FORUM AN ASKING ALOT OF QUESTIONS AND READING ALOT OF ARTICALS ABOUT ANS. I HAVE COME TO THE CONCULTION TO JUST ZAP IT. I AM WITH YOU I DONT HAVE BALANCE ISSUES OR FACAL ISSUES, I HAVE LOST ALOT OF HEARING THOUGH. SO MY THOUGHT IS KILL THE THING AND GET A HEARING AID. I HAVE A CONSULT WITH THE DOCTORS THE END OF JANUARY ABOUT MY RADIATION.
JUST KEEP COMING BACK HERE EVERYONE IS GREAT AND THEY AWAYS ANSWER YOUR QUESTIONS AND WILL GIVE YOU THEIR STORY, FOR ME I HAVE FOUND THIS SO HELPFUL.
GINGER
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Welcome Jesse,
My surgery was just 3 weeks ago today at House Ear Institute. My AN was .6 cm, so like yours, was also small. It was attached to the inferior vestibular nerve, and as your comment suggested, this DID make it more difficult to preserve my hearing. I am now SSD with an increase in tinnitus. My diagnosis was September 22. in October, I had a lot of motion sickness, symptoms made worse by the stress of the diagnosis, I'm sure. In October, once I'd made my decision, I was practically symptom-free. I'll be posting my progress later today on the site listed in my signature, but at 3 weeks out, I am nowhere ready to return to work. Give me another week, and I might be able to do light work on a part-time basis. Feel free to PM me if you'd like to ask questions.
Tammy
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Welcome Jesse!
I wanted to zap my AN but it was too large. Surgery was not awful but why have it if you have other options? I know some would rather have the tumor completely removed but surgery does not guarantee that.
Best wishes with your decision making process,
Cyndi
PS - my family lives in NC (Holden Beach, Wilmington & Durham) so I wish I were there too!
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Hi Jesse,
Welcome to our special club:)
It is true you have to go w/your gut on which procedure you want. It's true, surgeons recommend surgery, gamma/ck guys recommend zapping the thing.
My AN was small also, only it didn't end up being an AN, but a hemangioma. They could not tell this from the MRI & I often wonder what would've happened if they zapped it, only to find out there was never a core to this supposed tumor. I'm glad I chose surgery. I heard that CT scans can detect hemangiomas better. It would be a good question for your neurosurgeon friend.
Best of luck in your decision making,
Carolyn
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Hi Jesse,
I see that you already received some great advice. After being diagnosed you feel like you are in a roller coaster ride and can't come off it. The most difficult thing is making a decision on treatment. It's great that you were diagnosed early. I was told by the team that is folllowing me during my W & W period, that regardless of what treatment I choose, they cannot guarantee the outcome as far as symptoms are concernced. They actually said that they could not confirm if symptoms would get better or worse but supposedly, whatever symptoms you have prior to treatment is most likely what you will end up with after treatment. I think they were being very honest and fair in their assumption. However, as you can see everyone has done well, some with more bumpy roads than others but overall, with good results. Let us know what you have decided.
Vivian
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Hi Jesse,
You have already PM me so you know who I am. I am with Steve....get it ZAPPED. But, I think Jan is equally right to suggest that some people just need to know that the AN is out of there. I was fortunate enough to have a doctor who does three treatments: GK, CK and surgery. He explained them all in detail and gave me the choice. However, he said he felt more comfortable with GK....but, I think that is just his "thing"! Research and just go with your gut, and remember that everyone is different, has different outcomes and handle things in different ways (for me, it was more emotional than anything else). I'll PM you more later. You are in a good place to get info here. Just don't overdo it is all I can recommend. I was obsessed with the board for quite a while before I made my decision on treatment (as many of you might remember), and it would have helped if I had stepped back for a while to keep from being on overload all of the time. Steve always recommended that I shut the computer down for a couple of weeks, but I setted on a couple of days!!! Or....was it hours!!!
Best Wishes!
Nancy
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thanks for all the responses and support.
my wife, mom, and two closest buddies are doing good jobs of listening, and keeping up with big words
wife is a (essentially) retired physical therapist ( now full time mom x3) so she is fairly savvy on the medical stuff.
plus, a home bound PT will be good to have once something is done.
it is also good having this board to vent and post questions to.
thanks.
i remember when graduating from residency, i was torn between staying there and joining the staff where i had just trained, where we had just gotten married, where we ( and her parents both lived) and where we still had two houses. . .
vs moving to somewhere else.
it was going to be a tough, tough decision, one i didn't really relish making,
and in the end, when the position there in columbia evaporated, i came to greenville, and didn't have to make a decision at all. it was made for me.
it was actually quite a relief, and i must say we both LOVE it here, and i know i like it here more than i would have staying in columbia.
i usually think of myself as being pretty decisive, about things. having a difficult time feeling it right now.
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i usually think of myself as being pretty decisive, about things. having a difficult time feeling it right now.
Deciding on your treatment option is sometimes the hardest part of the whole AN journey; you'll get there in time.
Lots of us, me included, went with our gut reaction; sometimes you just know when it's right.
Jan
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Jessie,
This is just a suggestion, but it has really worked for me. Through this discussion board I was able to find some folks here in the Denver area, and I was able to pick their brains (literally) about the options available in the Denver area and out of state. There are four of us. One guy had almost the same situation as mine, and I ended up going with his doctor at the same facility. He had GK about six months before I did, and he basically walked me through the whole thing. We keep in touch through email around MRI time. He is doing very well, and we are both getting good followup care. I have also met two other ladies in the area who had their ANs treated around the time I had mine done. Even though their situation was different than mine (they had surgery), we have bonded over just having an AN and also sharing our experiences about things to do here in Denver area....like where to go camping, restaurants, etc!!! We have met for lunch a couple of times, and it has just been great to have these friendships that developed out of having a stupid AN. I also met another woman in AL, and we have become really good email friends (plus, it's nice that I lived in AL for 8 years so we can relate that way). She had GK at Pittsburgh, and she has had a difficult time post GK, but she also has a lot of other medical issues going on that might be affecting her situation. This board is a great support and a wonderful way to gather information, but I have found it supportive in a more personal way by finding a few folks to bond with off the discussion board.
You have PM me a few times, and I will be happy to share other PMs with you....especially if you go the GK way! Take a deep breath and enjoy that car of yours. It is great to have distractions!!! And, when this is all said and done, I am sure you will find that you see life in a different way....hopefully in a positive way. Best wishes.
Happy New Year,
Nancy
Oh, and Cindy in the Atlanta area....you are the best, too. I didn't mean to leave you out in my post above.
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My first thought, Jesse, is BOY, are we gonna have fun with this guy!! A doctor!! Who found this board!! Do you know that a lot of the doctors tell patients NOT to visit these forums because they are afraid that only the patients with bad outcomes post on here? But we have all kinds on here, so it's good. Welcome. Kind of different when you are on the patient end of things. We actually have had several doctors on here in the last few years. One doctor even has a dog who was diagnosed with an AN. Weird, but true.
You are getting great advice. Hang in there. It'll be okay.
Sue in Vancouver, WA USA
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Do you know that a lot of the doctors tell patients NOT to visit these forums because they are afraid that only the patients with bad outcomes post on here? But we have all kinds on here, so it's good.
Hah! I didn't know that! My doctor never mentioned anything one way or the other about any type of support forum. I had a not so great outcome and post here, mainly to support others (okay, I get to whine too). Hope I don't scare the newbies... But the ones with bad outcomes show others that life CAN be good, whatever the outcome, right? ;)
It IS a great place for ALL :)
Maureen
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Do you know that a lot of the doctors tell patients NOT to visit these forums because they are afraid that only the patients with bad outcomes post on here? But we have all kinds on here, so it's good.
We actually have had several doctors on here in the last few years. One doctor even has a dog who was diagnosed with an AN. Weird, but true.
Sue is so right. I'm on the ANA's WTT (willing to talk) list and when people contact me by phone or email I always tell them about the Forum. Most have heard of it, but say their doctor has told them not to come here because it's full of scary stories that will only frighten them. So IMO it's up to all of us to prove that that's a myth :) I mention the ANA and the Forum to my doc all the time in the hopes he'll tell all his AN patients about it.
We have had several doctors as forumites, but none of them seem to stick around too long with the exception of Sam Rush (the one whose dog was diagnosed with the AN). Sam is one of the forumites who encouraged me to have the BAHA implant and I'll always be grateful to him for that.
Jan
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As you have no doubt seen, there's a great amount of info you can get from everyone on here. So sorry you had to become a member of this sorta exclusive club (no valet parking, sorry!). Sounds like you are asking all the right questions and getting all the info you can. I did the same thing, almost to the point where I was doing TOO much researching. But in the end, I went in very confident and not too nervous about the choice I made, and everything turned out just fine. Good luck and continue with the questions and venting! :)
Jay
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Hi Jesse,
As I read through your post the 90's movie, "The Doctor", with William Hurt came to my mind. Please don't mistake that I am indicating that you are an arrogant doctor, just a doctor who has now become a patient. I'm sure your sense of objectivity once you are a patient can go away. You may be a doctor, but you are human. So, all human emotions are experienced in a natural way.
Of course, the final decision as to how to get rid of your AN is up to you. It is very helpful to read about all the different approaches individuals have taken and the results they have had. It is helpful but can be confusing at the same time. When I first found this forum, I read with a compulsivity that I finally began to dislike in myself. Periodically, I had to tear myself away from the forum for breaks. What can I say, I am researcher about most things. This was no different in my initial approach, but it was enormously more important than mundane things like I had previously been researching like a LCD TV!!
I will forever be grateful to this forum. They often know more than the doctors in some ways from the collective experiences, such as what happens post surgery, radiation, etc...
I had a small AN, as well. I choose GK. While I have not been without post treatment problems, I would still choose radiation. I came with my own set of preexisting issues that feel sure complicated the radiation and feel it would have complicated surgery, as well.
I truly wish you the best in your decision making process! At some point, you will just know what you want to do. I hope that it will come and you will be at peace with your decision.
Windy
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Hi Jesse.
my i share a bit of my experience with you, and what helped me make my decision. First, I was also fortunate to know people within my treatment options ( cousin is president of local hospital and an amazing radiologist, boyfriend's brother is PT for major NHL team and knows an amazing Neurosurgeon for the team, My brothers best friend's dad is a local neurologist, and my friend worked at the MRI place.) All things pointing in my direction; anyway to make along story short, with the help of all my connections i was referred to Dr. Aariaga (not sure on spelling) at Allegheny General Hospital in Pittsburgh, PA. and to Dr. Douglas Kondziolka with UPMC of Pittsburgh. I visited both, Dr. Aariaga favored invasive surgery, I was told by him that I would spend a night or 2 in the ICU, I would only havd a 10% chance of KEEPING my hearing, there was chances of facial paralysis(which i did not have yet), brain leakage, and regrowth. surgery was obviously his choice, but only said that there is chance of developing cancer cells when doing radiology. When I went to Dr. Kondziolka ( world known for his Gamma Knife Radiation treatment for AN) we spoke about pros and cons; I would be on outpatient surgery, I had a 25% chance of LOOSING my hearing, I did not have to go under anesthisia, and the truth about the radioation cells? he told me that yes, there is a chance, a very very slim chance' but, because my body has already developed a tumor in its own; i do have a higher chance of developing a cancer tumor on other parts of my body. Although all this is shocking, i choose radiation with Dr. K.
I am almost 1 year post procedure - only 12 days away! I was groggy for about a day after procedure, had some headaches frequently post precedure intul about a month ago, these headaches still come, but not often at all. Anyways, my facial numbness is getting better, i have lost a very small amount of hearing; not even noticable and i have developed Tinnitus; which ive leared to live with.
with a tumor your size, mine was 2.2cm; i would go with GK, but of course you are an educated person with alot of help from friends. good luck and if you wish to talk more about my experience please feel free to send a message.
good luck and the best of health!
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Hi Jesse-
Wanted to extend a belated Welcome to our elite little club. Sounds like you are doing your homework, reading, talking to people. I am a firm believer in arming myself with knowledge, so it sounds to me like you are doing all the right things. Glad you found this forum - lots of great, caring people here. I am quite sure I would not have gotten through my surgery and after effects nearly so well without the friendship and support here.
BTW, my husband races in SCCA, so we'll both enjoy your videos. He and his partner are hood-deep in building a new Spec Miata for the 2010 season. He's also raced at VIR, although it is quite a drive from NJ. Nice track, though.
Debbi (freezing in NJ)
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met with dr burke dial, in columbia, s.c.
he is a neurosurgeon, who has hung up his scalpel, and is exclusively treating with the gamma knife.
ironically, he was one of my attendings during my neurosurgry rotation during my internship, down in columbia.
overall, i feel very good abuot GK, and find myself 90% confident that i will pursue that path.
as i expected, he preaches what he practices.
he said he would not hesitate to undergo GK were he in my shoes, at this [my] point in family/career/life.
he knows one of the two otologists i will be seeing week after next, and said i should expect to hear GK pooh-pooh'd, and hear that i should get it cut out.
frustrating but anticipated.
turns out my MRI (at diagnosis) was done with 5mm slices
frustrating, considering that the technician KNEW it waspositive, that he didnt get additional 1mm slices (either by protocol, or by calling to get a STAT order for such)
i guess that would beat the hospital out of a 2nd MRI, ( and hence, 2nd MRI charges)
why do one bilable procedure when you can do two???
anyway,
thanks for all the replies and support.
dodging the downtime and recovery from surgical excision is a big part of what is pushing me towards GK.
so far there doesnt seem to be a huge difference in outcome with regards to hearing preservation, and perhaps better resluts regarding facial palsies, (at least according to the 2007-2008 patiet survey here)
all for now
jesse
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The one drawback of radiation treatment is that it generally doesn't affect the balance nerve one way or the other.
how is that a drawback?
If you are having dizziness or vertigo problems before treatment, there is a significant chance that the problems would continue after radiation treatment, since the damaged balance nerve is still there and still damaged. Sometimes people do adjust afterwards, but sometimes it is difficult.
Steve
no vertigo, no dizziness, no issues pulling 1 G turns at 60+mph
top speed in the last video is abuot 118.
your note above seems to suggest that if i dont now, i probably wont later.
to be honest, part of me(undisclosed percentage) would rather be deaf in one ear, and still be able to smile, keep soup in my mouth, blink and race cars. ( than be vestibularly screwed up)
SSD could open a whole treasure trove of excuses for not doing stuff i dontr want to , (heh-heh)
I am barrel racing (horses) with one balance nerve and not having any issues. I can pick my kids up and spin them around without getting dizzy. I couldn't do that before surgery, and my riding was suffering for a couple of years before I realized I had a problem. I had a ginormous tumor though. Once the damaged nerve was gone, I needed about a week to fully adjust and have been good ever since. I can't speak for if you're not having balance issues already though--the adjustment might be more difficult. Good luck!!
Vonda
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Welcome to our club!
I have not been on the site for awhile, so I just found your post.
I think a GK decision would be good for you. Let me know if you have any questions that I might could answer.
Grace
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i was feeling pretty confident i'd go gamma, after driving home from the consult tuesday morning,
i figured i'd still see the two otologists, with whom i was already scheduled,
just to see what they had to say,
anticipating they (too) would preach what they practice, and say i "should have it removed."
i even went so far as to pencil myself in on their schedule for 2/16/10, as it worked well with time off from work, which would have been spent on a vacation.
however . . .
the neurosurgeon, who runs the gamma knife, (with whom i ahd JUST met) suggested i visit with a dermatologist who went to House, for his resection.
he (the dermatologist) had actually given us a few lectures, during my E.R. residency (small world, huh?)
i got to talk to him . . . TODAY!! lots of similarities!!!!
he is a physician (like me, (different specialty, though))
he was 5 years older than me, at his diagnosis, (almost my age)
his was 5mm (small like mine)
his was totally in the IAC (like mine)
his hearing was still pretty functional (as is mine)
he had had no balance issues (like me)
he used to race cars (as do i still)
he is a jet pilot on the side as well (air force) (i, alas, will never go that fast, or pull that many G's)
he had small children at the time (as do i now)
so, i thought wow,
what a comparison.
he was MOST concerned about facial nerve preservation:
his appearance could have a huge impact on his clientele, (less so for me, as people probably wont leave the e.r. if the MD has a little droop to his face) (and if they do, they probably shouldn't have been there in the first place)
house essentially promised VII nerve preservation , and pretty good odds on hearing preservation.
he was concerned about long term effects of the radiation.
he wanted it OUT of his head
he naturally wanted hearing preservation if possible
he underwent a middle fossa approach at HEI
lost essentially NO additional hearing as compared to pre-op.
had NO VIIth nerve issues or palsies.
toughed his way through the nauseating vestibular re-training
--(out of the hospital in like 2 days) but still stayed in teh nearby hotel for a week)
was flying (piloting) again about three months later.
while this doesn't quite totally sell me on house,
it has given me pause to slow down, and reconsider the GK momentum
he spoke to one otologist who replied that he may do about 20 ANs/year, but folks at HEI are doing like 200/year
(just quoting the conversation today (which was his quote of a stat from 4 years ago))
so, i am really thinking the door to surgery may be reopening, as compared to my GK gung-ho attitude just a day ago.
also
i am getting more and more interested in SBI and endoscopic surgery.
especially since one of my main attractions to Gk > microsurgery is avoiding what seems like a HUGE down time from work.
all for now
eternally tempest-tossed in this decision-makng quagmire.
jesse
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eternally tempest-tossed in this decision-makng quagmire.
jesse
That sums up how I (and most of us) felt after diagnosis and knee deep in the decision making process...you just put it in much better words than I ever did!
You're doing the right thing to consider and reconsider all of your options. Just remember that as good as the docs at House are (and I'm a prime example of their great work), there are no guarantees...I know, I'm speaking to the choir with you being a physician...everyone's recovery and results are different. But, you will know what's right for you at some point - the decision will just feel right.
Cindy
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Jesse,
Wow, that sounds like Karma or something! All these people you "run" in to who you know, knew or have a LOT in common with.
What are the odds?
Maybe take this as a sign......GK or surgery at house? Eenie meenie miney moe..........
Continue to keep all those options open.. I never had to worry about options >:( or :)
Mine was smashing the brain stem......Hang in there, the answer will come.
Maureen
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You mentioned that the otologist may do about 20 ANs/year. Yes, that would give you pause. Food for thought: It has been so long since I did my research after being diagnosed, but I believe Wake Forest does GK on 100-200 ANs per year. The number 360 is in my mind, but that may be the total # of GKs they do per year. If you want to consider them, I will let you know who to contact.
Grace
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I just found an Email from 2006. 360 is their approx. annual caseload, with almost a third of them being ANs.
Grace
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Jesse,
Heh.. you're going through the thought process of making a decision more openly than most, but that's a good thing because people see what things they should think about when weighing their options. It's also great for those of us who really had no decision to make because of size, pressure on the brainstem, location, etc.. (me included)..
A few words of caution.. First, I wouldn't make a decision based on the outcome of other individuals no matter how closely they compare to you in certain areas. With every option there are people that have complication-free outcomes, short hospital stays, and generally come out smelling like a rose. There are others with that same option that have complications after surgery, longer hospital stays and come out not as good as they'd like. Each option (CK, GK, endospopy, TransLab, RetroSig, etc..) have RISKS and everyone is going to follow a different path. It's natural to gravitate towards the positive outcomes and generally things that are appealing to you and discard those things that don't fit that mold, but I urge you to consider your options for YOU and not based on a limited set of idealic individuals..
Second, I urge you to do research (I know you will) into SBI especially on this forum. While one cannot argue much with their successes (even as evidenced here), but as others will tell you there isn't much "bad" info on SBI out on the net partially because they don't share information with the surgical community.. They don't publish their stats.. Generally speaking, they're very secretive about what they do so, rightly so, many in the surgical community are leary of SBI. The primary doctory at SBI was trained in cosmetic surgery rather than neurology or otology. But, do your own homework... find what you can on them.. search this forum for the countless discussions on their approach. Don't solely search out information on SBI from SBI because they're selling their own surgical approach so it stands to reason that they won't say anything negative about it.
Good luck and let me know if I can help in any way... :)
Regards,
Brian
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Damn good points, Pooter.
Couldn't have said it better myself. I'm in TOTAL agreement with your post.
Some very good advice.
Jan
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Glad you said it Pooter. During my visits with doctors my husband specifically asked their opinion of SBI, and we were surprised at some of the data that one doctor shared with us. When I was in my decision-making stage, I found that I was leary simply because Shahinian is not a neurologist, but is a plastic surgeon.
I would suggest that researching a little deeper in his particular case might be a really good idea.