newbie hello, guess what i got for christmas??

[moe]

  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

[leapyrtwins]

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

[jaylogs]

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

[windy]

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   

 

[sarahinPA]

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!

[Debbi]

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)

[neuroma_racer]

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

[arkansasfarmgirl]

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

[GRACE1]

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

[neuroma_racer]

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

[cindyj]

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

[moe]

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

[GRACE1]

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

[GRACE1]

I just found an Email from 2006.  360 is their approx. annual caseload, with almost a third of them being ANs. 

Grace

[Pooter]

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