Decision time - looking for words of advise

[Woody1150]

Hello all,

After reading through quite a few posts from various people, I decided to post something of my own.  Mostly to get the thoughts and experiences from those that have already went through this process.

I decided to get myself checked out when I was having issues of being dizzy & lightheaded.  After visiting an ENT specialist, that's when they told me I had slight hearing loss in my left ear.  I hadn't even noticed a difference it was so small.  After 2 MRI's I was diagnosed October 2011 with what the doctors believe is AN in my left ear.   From what the docs say, it is relatively small at 4mm.  I was referred to Dr. Jack Kartush as being one of the best in MI, if not in the top group of surgeons for AN's in the country.   I've visited Dr. Jack Kartush at MEI a few times and scheduled my translab surgery for Jan 5, 2012.   I have confidence in his ability with all his experience, but now I'm starting to second guess myself on what procedure I should do or if I should just "watch and wait".  I'm 33 and have very minimal hearing loss from it.  The hearing loss is currently only high frequency sounds from what the audiologist tells me.  The dizziness has pretty much went away.

My question is to those that have had the mid-fossa procedure.  I need your thoughts of how you dealt with the potential risks with moving the brain and such.  I know that even with that procedure it's possible my hearing won't be saved but like others have said, it would be nice to at least try.  It's also possible according to Dr. Kartush that my facial nerve could be in the way and he could affect it.  I just am having a hard time deciding if the risks out weigh the potential.  So... just wondered how others dealt with this scenario.

Thanks for listening (reading)

-Brian
Grand Blanc, MI

[TJ]

Brain

Your AN is indeed on the small side.  And yes you have time to make the correct decision for you.  AN's tend to grow very slowly usually 1-2mm a year.  Since it is so small you also have other options, not just surgery.  GK and CK are very effective at control when the AN is so small.  With radiation, there is tremendous success in saving the hearing.

Do yourself a favor and research all you options.  Of course it is your decision and I know that you want to make the correct one.

TJ

[Woody1150]

TJ,

Thanks for your input.  With the little research I've done, and from what Dr. Kartush has told me, I've kind of been leery in regards to radiation.  He has told me that he typically only uses that in older patients because there are still no clear studies of what the affects are on the brain with radiation that close to it.  It's also possible with radiation that if it doesn't stop the growth it can make it harder to remove with surgery.  There have also been the rare instances where radiation has mutated the tumor into a malignant growth.  As I said, this is just with the little research I've done and what he has told me.

[Heresrose]

Woody115,

I just had translab on 11/28. I only wish i was diagnosed 13 years ago when I suffered from vertigo or five years ago when I started experiencing tinnitus so that I would have had the mid fossa or radiation options. My AN grew too large for these options.

As I understand it, if you still have useable hearing on the AN side and the AN is as small as your mid fossa approach is best if you want to try to preserve hearing. That's the way I would have gone if surgery was the only option. I would have also looked into CK because I would have tried to avoid this extremely invasive surgery.

So my question to you is, why the rush? Have you gone for a second, third opinion? Just my opinion, but I think useable hearing is worth saving so I would think twice about translab if I had other options.

Good luck to you in your decision-making process.

Rose

[Keeping Up]

Woody115

I am a bit reluctant to write this - however with a tumor that small have you considered seriously watch and wait and its pros & cons.  Assuming a small tumor, not up against a brainstem, you may not have a tumor that grows to be a medical issue for 10+ years.  research shows 65% of small rumors won't grow. (ie the potential exists it may never need treatment)

I am W&W, diagnosed at 36 years old.  I am now three years into W&W wait.  My hearing is failing but otherwise have few or no symptoms. 

I question, but likely shouldn't your doctor's reluctance to scan in 6 months to see if you have growth.  His view that radiation on young patients isn't advisable seems outdated as compared to the GK and CK professionals.

My point for the evening - won't attempt to sway you as you are dealing with professionals.  however, glad my doctors are leaving my tumor alone.

Best of luck

Ann

[Woody1150]

Ann,

I have considered W&W and still am.  The part that has scared me is that from the MRI's the doctors have looked at, they aren't sure if it is a AN.  It looks different than most of scans they have seen because it looks "puffy".  Not exactly sure what that means.

Thanks for your response, it is good to know that there are people out there that are in W&W and have been for some time without issue.

[alabamajane]

Woody,
I was w&w for three years but my tumor was much larger than yours.. I had very good hearing, some dizziness, headaches and balance issues.. all of which got worse over the last year. I had had about 8 MRIs in those yrs each showing some growth.. mine was not confined to the IAC,,internal auditory canal, but had grown into the CPA and was pressing on the brain stem by the time I had translab surgery Oct 27 this year.. I am not a medical professional so all this is just my opinion,, however, I agree with others that you should have ample time to research and most definitely get more opinions as to your options.. this surgery,, any of the  three types is not minor by any stretch of the imagination.. and like my Dr said "not for the weak and faint of heart".. mine ended up being 11 hrs and facial nerve was cut and had second surgery 5 days later for nerve graft.. VERY hard week ......I and many others have sent MRIs out to House clinic in LA for free phone consultation... very informative and helpful in decision making and there is "no obligation" to go out there for treatment.. one avenue for you and I am sure there are other Dr that will do the same.. the more opinions you can gather, the more comfortable you will feel with your final decision,, I "hear" some reluctance in your message..... go to the post op thread and see what some of us have been through too,, everyone's experience will be different as all tumors are different,,, but you do have time on your side since it is small yet..
I too am curious as to why this Dr did not suggest w&w and another MRI in 6 mo as your tumor is small.. mine grew to 2.8 cm..also you must consider that Dr is a surgeon,, so that will impact his decision to go ahead with surgery and his reluctance for radiation. I too was given similar advice about radiation,, which I too think is somewhat outdated,, however, that was not an option for me as mine grew too large.
Good luck to you in this journey that no one wants to go on,, the decision is one of the hardest you will ever make, but once you have all the info from different sources,, you will feel comfortable with final decision,, just remember it is non cancerous, yours is still small and generally they are slow growing,, take your time... our prayers are with you.. we are here for you to ask questions.. Jane

[Woody1150]

Thanks Jane.  To answer one of your questions, my Dr did say I could W&W.  To me though, I guess I don't like the fact that something is growing in my head as well as the fact he said from the MRI it did not look like a "regular" AN.  Also, I would think it would be less complicated to get it out early when it is small and has not "dug into" my nerves.  Maybe that's just my thinking. 

As I've said, I do have surgery scheduled but am starting to get cold feet and wondering if I should wait.

[alabamajane]

Good points for sure and if i had not w&w for three years I MAY not be dealing with issues I am; however,, will never know for sure..
the fact that the Dr is not sure it is an AN may be all the more reason to send MRI out to house or some other consultation group and see what their Dr says,, it will be more info for sure and I was glad I did.. from what I found out ,, it is hard to know exactly what is going on inside there from the MRI anyway.. like they could not tell the involvement of facial nerve from MRI but did know it was pressing on brain stem so time to move forward.. "cold feet " is not necessarily reason NOT to do surgery either ,, as I believe that is pretty normal response to this serious a surgery,, I was apprehensive too up till day of surgery,, then it was OK let's get on with it!! good luck

[JAndrews]

This is just my opinion, please make your own decision!  All of the consults I had said the same thing about the radiation just as you were told by your surgeon. So I would go with the majority on that one. Most likely its going to keep growing and will need to be removed at some point. I think the younger we are when its removed, the better. But its so tiny right now, you have got a lot of time to research and make a decision thats right for you. I would send the MRI CD out to a few other surgeons. This way a few more eyes can take a look at it and you may get a more definite diagnosis of what it is. I was originally told I had an acoustic. When House saw the MRI and the Mayo Clinic they both said it was a meningioma. Which it was. House read it for free and called me at home. I had to go to Mayo to meet with the surgeons to get their opinion. Just a few ideas for you! But like I said...please..this is just my opinion.

[leapyrtwins]

It's your choice, and you have to make it. 

If it were me, I'd go with mid-fossa and try to save your hearing.  I'm SSD and am happy with my BAHA - but it will never be like having my "normal" hearing back again.

BTW, Dr. Kartush is an excellent doctor.  You're in good hands.

Jan

[lizzie1hoops]

Woody,

I just came across this thread and was wondering what you decided to do.  Whatever path you chose, I hope you're doing well!

Liz

[stephSF]

I understand watch and wait...however, why watch an wait as the tumors  slowly grows and can stick onto more and more parts of the brain stem and nerves?  I may get blasted for this, but what the hell is the wait?  It's gotta come out eventually, they do grow, they encroach on more things in the head and if a peron is young and healthy why not take it out now?  I have a tiny piece of the sac left so I'll do an MRI in 6 months.  I see it shriveling up already...and gone.  .
I just throw my encouragement to those who want surgery and know there are great surgeons and docs out there who are doing them every day with great results.  That's my 2 cents...

[leapyrtwins]

Lots of people watch & wait and it works well for them.

I'm not the type who could do this - it would drive me crazy!!! - but it's a personal choice.

And, as evidenced by many on the Forum, some can watch & wait for years; Mickey comes to mind.

Jan

[jaylogs]

I whole-heartedly agree with Jan...just the thought of knowing and worrying that that little bugger inside my head may grow would drive my bananas as well!  And Jan was one of those rare people who's AN was much bigger after just a month or so than what appeared on her MRI...so there is no rhyme or reason on how these things work.  As Jan also said, it is a personal choice.  All in all though, I think everyone can agree that these AN's S-U-C-K!!
Jay