Newbee here and alittlle nervous

[CARMEN12]

Hello everyone,
I have been reading these posts since December when I was told that I have a 5mmX3mm AN,
I am scheduled for surgery 5/10/06 at St. Vincents in LA, House EaR Doctors.  I got only one opinion because it is from Dr. Fayad @ house and they are supposed to be one of the best, but as the date gets closer I am trying to find a way to avoid surgery, The terrible eposides of spinning, dizzyness and loss of the ability to function took me to the doctor I have had about 5 eposides and when they happen it's worse than I can even say, but I can live with them instead of surgery,I have no hearing in my R ear but other than that no other symstoms the MRI says possible so how do they know for sure only one MRI and a hearing test, what if it is something else? I am afraid to ask for another MRI to see if it's grown cause i'm for monitoring it!!!!!
everything I read here makes me so scared of recovery or even surviving, I am a single Mom and basically it's only me.  Thanks for listening any advise would be appriciated.
Carmen

[Larry]

Hi Carmen,

Welcome to the club. House does have a great reputation but you still should seek another opinion, especially radiation treatment. There are a number of threads on either cyberknife or gammaknife treatment. Do a search for these on the board. Your growth is certainly at the small end of the scale and unless it is pressing on the brain stem or causing you a lot of discomfort, then waiting is an option. My regrowth is of similar size and i am not doing anything about it yet.

have a look at the options available. What surgery method are they planning to do on you?

Larry

[Mark]

Carmen,

I would echo Larry's comments fully. Given the small size of your AN both surgery and radiosurgery are very viable options and you would have good odds for a favorable outcome either way. For my money surgery carries with it far higher risk of complication than radiation for an AN your size, but ultimately you need to go with what you are comfortable with. Since you have been looking through this forum since December one informal survey you might consider is to tally up how many posts concerning a post treatment deficit ( balance, hearing , facial nerve function) come from either a surgery or radiosurgery patient. That might be somewhat revealing for you.

At any rate, I always feel a newly diagnosed patient owes it to themselves to get an informed opinion on both options from an expert in both. HEI is a wonderful place to go if you have already decided on surgery and want to go with the most experienced in removing AN's. However, they do not do ( nor understand , IMO) radiation and have a biased agenda against it, hence they are a lousy place to get good information on it. I do think the surgical outcomes are higher there given their experience , but I also believe they are somewhat inflated as well. Again, as others here will testify, they are an excellent place for surgery if you are sure that is what you want, but I would talk to a neurosurgeon who does both to get a balanced view of your choices. From what I have observed very few who use both would suggest surgery for such a small AN

Mark

[ppearl214]

HI Carmen and welcome... know first that we are all here for you. :)  If you've been following along since December, you know there is a wealth of info on treatment options, outcomes, etc, noted here in the forums. Many here are open to sharing their experiences with you on email and even on phone.  Having just gone through the decision making process as well (like you, small and many options available), I shared with many here my discussions with neurosurgeons (I have my primary here in Boston and also spoke to Dr. Brackmann at House Ear Clinic as well)... I also did a bit of research for many radio-surgery options as well. I have to chime in with Mark that being "well-informed" truly is the best step for patient advocacy...and no one is the best advocate for you right now than you and the knowledge you gain.

Please be your best advocate. If you are fine with the microsurgery at House (and yes, they are the tops in microsurgery in AN, so we know you are in great hands out there), then have faith in your decision. If you feel that based on info you have gained in forums and discussions with others in your shoes (like me, with small AN's), then please continue your research.  As long as your AN does not put you in an "emergent" situation, then, IMO (in my opinion), please weigh all options available as long as time permits.

Please hang in there and know that this support forum, even with our giggles thrown in to help our day along, truly is a wonderful place for info, a shoulder, a friend, an ear... even if you do or don't want it... I couldnt' have gotten through my treatments last week if it weren't for everyone here... truly.

Hugs to you,
Phyllis

[Robquinn9]

Carmen,

I'm no doctor, but I'd echo Mark's comment on the size of your AN and the surgical approach.  Perhaps a 2nd opinion by a doc that does radiosurgery would be a good idea.

Regardless, if you do pursue a microsurgical approach, I can tell you that, as the spouse of a recent patient, there is a lot to be hopeful about.  Yes, it is a scary thing no question, but you can get informed and make the right choice for yourself. 

It's been one month since my wife's surgery, and I can tell you she has made some REMARKABLE strides in 4 weeks.  I would not have tough that in the days immediately following the surgery.  They were rough but she fought through it and is in great shape right now, considering what she went through.

Stay strong and soak up the information and suport you have here.

Rob

[Battyp]

HI Carmen,
  I'm sorry I didn't a chance to write you back earlier they stole my identity and by the time I got it back I couldn't find your screen name!

I echo the others.  You're AN is small so radiosurgery or microsurgery would be an option.  You have to judge for yourself how you feel and what your desired outcome is.  I was told by a local neurologist that AN's typically do not kill anyone (the expection being if it's pressing on your brain stem) and are not something one would typically need surgery for.  They are slow growin benign tumors that are sometimes better left alone.  This was in context of her questioning my decision for surgery.  After looking at my MRI she agreed mine needed to come out and in the manner it was taken out.  If you're not wanting the surgical route or unsure of your decision take the time to get a second, third or fourth opinion until you do feel comfortable!  This is a life altering surgery and some bounce back with no problems and others like myself are not as lucky and we have to fight our way back.  Once you have your surgery you can not second guess your decision or it will drive you to distraction!

I too am a single mom and understand those concerns.  If I can help in anyway don't hestitate to email me...my direct email is listed on my profile if you don't want to go through the server. 

Know either way we are all here for you and well help get you through this!  Are you in an area where you can easily get a second opinion or a radio surgery opinion?  A lot of places with accept your MRI and give you a phone consult if not.

[Captain Deb]

Carmen,

I would echo Larry's comments fully. Given the small size of your AN both surgery and radiosurgery are very viable options and you would have good odds for a favorable outcome either way. For my money surgery carries with it far higher risk of complication than radiation for an AN your size, but ultimately you need to go with what you are comfortable with. Since you have been looking through this forum since December one informal survey you might consider is to tally up how many posts concerning a post treatment deficit ( balance, hearing , facial nerve function) come from either a surgery or radiosurgery patient. That might be somewhat revealing for you.

At any rate, I always feel a newly diagnosed patient owes it to themselves to get an informed opinion on both options from an expert in both. HEI is a wonderful place to go if you have already decided on surgery and want to go with the most experienced in removing AN's. However, they do not do ( nor understand , IMO) radiation and have a biased agenda against it, hence they are a lousy place to get good information on it. I do think the surgical outcomes are higher there given their experience , but I also believe they are somewhat inflated as well. Again, as others here will testify, they are an excellent place for surgery if you are sure that is what you want, but I would talk to a neurosurgeon who does both to get a balanced view of your choices. From what I have observed very few who use both would suggest surgery for such a small AN

Mark

I totally agree with you about exploring the radiosurgery/radiotherapy option for very small ANs.
Actually, House does do FSR on a small number of patients.  And Dr. Brackman of House recommended radiosurgery to a fellow I've been chatting with for his small AN.

Capt Deb

[nannettesea]

Carmen,
I TOTALLY second and third the posts about exploring radiosurgery.

I had constant dizziness prior to surgery, and am now much worse.  I immediately dismissed radiation as an option, but wish I hadn't.   Your tumor is really small, so you may wish to check into it.

Nan

[Captain Deb]

Also Carmen--double check the size and make sure it's in mm and not cm--this is confusing for some of us Americans who don't use the metric system--1 cm is about 1/2 an inch and a mm is one-tenth of that.  I'm suprised that they would not recommend watching and waiting for a while. These tumors generally grow quite slow.

Capt Deb

[CARMEN12]

Thank you all for your words, I am checking opions out best I can get real confused.  Someone asked about the type of surgery I'm scheduled for and it is the (Transb).  What happens with insurance Don't know if my primary care physican will ask for another referral for second opinion
and if so does anyone know who I should see in southern california besides House.  My doctor said she felt comfortable with the surgery approach just get it out and over with, don't know why I am such I chicken, I hear myself asking (why me)but  It could be so much worse. Well got to get to work again thanks for all your support.

[Battyp]

Carmen are you sure about the size? 
Have you checked on radiosurgery which is the gamma knife or cyber knife?
Know what ever path you take we are here to get you through!

[ppearl214]

Know what ever path you take we are here to get you through!

I second that!   Hang in there, Carmen!

Phyl

[Kilroy1976]

I don't see why your PCP wouldn't give you a referral for a second opinion, but if she refuses you might try calling your insurance directly. Mine was pretty sympathetic to my needs.

With all due respect to your primary, you may want to take her advice with a grain of salt. This is not the flu or a rash. You have a problem that really requires consultation with specialists. Best of luck in your decision!