Im back from the Neuro...

[tatianne]

my AN has grown from 9.5 mm to 1.4 cm, which I think is 15mm...

and

neuro surgeon still wants to wait another year!!!

Im upset and not sure what to do.

Im seeing my neurotologist tomorrow..

That means my AN could be almost 2 cm by next year, is it safe to let it grow to that point ??

He said its not touching anything and still in the canal and no where near the brain and feels that we should try to preserve hearing for as long as possible...

Anyone waiting and watching with an AN this big ?? He says its still considered small..

I dont know what to do,
T

[Palace]

Hi


Get as many opinions as you can.  You're young and have a long way to go!  Others will respnd to this with more experience than myself.

I had many problems before my AN tumor reached 22mm.  Remember, each shape is different as it grows and everyone doesn't experience the exact same symptoms.  Mine was touching on the brain-stem for a long time.  I had severe symptoms to deal with before being treated. 

Truthfully, I don't think I could "wait and watch" when mine was getting close to the brain-stem.  (then really bad experiences once it was on the 8th cranial nerve)  I wasn't diagnosed until later so, I didn't have much choice at all.

Make a list and ask as many questions that you can think of.



Palace

[tsl]

If you aren't comfortable with your Dr.'s recommendation, get a 2nd (or more opinions).  I wouldn't want to live in a state of anxiety for a year.
Take care,
Theresa

[ppearl214]

If you aren't comfortable with your Dr.'s recommendation, get a 2nd (or more opinions).  I wouldn't want to live in a state of anxiety for a year.
Take care,
Theresa

*blows Theresa a smoochie* 

theresa is right... in this case, how many dr's is too many when it comes to AN's?  Do "too many cooks spoil the broth"?  Tatianne, do what you have to do.... what is best for you... follow your gut and do what you feel is best for you.

xoxo
Phyl

[tatianne]

has anyone else here had such fast growth with there AN ?? that 5mm in one year !

ISnt the average 1 to 2 mm per year ??

I have an appt tomorrow with my neurotologist..i trust him the most..he studied ANs at Harvard for a few years.I will see what he says, I have a feeling he will not agree because when I had my 6 month MRI last January he told me that the growth I had then of 1.5 mm was a lot and he wanted me to have a GK consultation, but first to see the Neurosurgeon and see what he says. The neurosurgeon told me he would suggest I wait a year to monitor the growth, that sometimes the things grow really slow and even stop growing for long periods of time..at the time it made sense, its was only 9.5 mm...but now it doesnt seem to make sense to wait another year, by then it will be most probably almost 2 cm..

[Palace]

Hi again---


Yes, 1mm to 2mm per year, can be the growth rate.  That was about mine, when I figured it all out.  (of course, we are all different)

You'll make the right choice for yourself and it's good you are doing your research.



Palace

[fbarbera]

Hello Tatiana,

I think you should get second and third opinions from neurosurgeons with a lot of experience treating Acoustic Neuromas.  Your tumor is clearly growing and there are risks involved with waiting.  The larger the tumor is when you finally get treated, the more likely you are to lose hearing and experience other symptoms, such as balance problems.  Right now, you have the choice of being treated with radiation or surgery.  If your tumor grows to 3 cm or more, you will lose the option of being treated with radiation and you will be required to have surgery.  Larger tumors poses a greater risk of hearing loss and facial nerve damage.  

With a small AN such as yours is right now, you can treat the tumor and still preserve your hearing.  I have a 2.6 cm tumor and underwent Cyberknife six months ago and still have good hearing.  There are some people out there with ANs smaller than yours who lost there hearing very suddenly.  Others have larger tumors and still have maintained their hearing.  The bottom line:  waiting does not mean you will preserve hearing.  While the tumor is growing, there is no way to predict how the nerves will respond -- whether you will lose hearing or start to experience other symptoms.  The best way to ensure hearing preservation and prevent other symptoms from developing is to stop the growth of the tumor by treating it.  And the smaller the tumor at the time of treatment, the better off you are.  If it is absolutely certain that your tumor is growing, I am not sure there is any benefit in waiting.

At the very very least, I would have your next MRI in three months or six months, definitely not a full year.  But again, I think you should see other doctors and seriously consider treating the tumor now, while it is still small.  Don't be shy about contacting expert doctors anywhere in the country by email.  I found neurosurgeons are quite willing to discuss ANs without necessarily having a formal appointment/consultation.

Sincerely,

Francesco



  

[Jim Scott]

Hi, tatianne:

Please get that second medical opinion, as you planned, and seriously consider either surgery or radiation treatment before your AN grows much larger.  Despite your doctor's opinion, common sense tells me that simply 'waiting-and-watching' with your tumor's current rate of growth isn't very wise at this point.  You're very fortunate that the tumor isn't seriously affecting any vital nerves but as it continues to grow, that can and likely will change.  Take control of your situation and don't allow a doctor's opinion to absolutely dictate your decision, when you're the one who will suffer if he is wrong.  I have complete confidence you'll consult with other physicians, consider all of your options and ultimately do what is best for you.  Of course, you have our prayers and all the good vibes we can send your way. 

Try to stay strong.

Jim

[goinbatty]

I can only tell you what led to my decision for treatment.  After the second MRI showed the tumor had basically doubled in size, I decided it was time to treat even though my symptoms were relatively minor.  It had gotten to where it seemed that all my focus was on this tumor.  After loads of research and multiple consults, I was comfortable with the treatment option I had chosen.  It is such a relief to have that over with.  I agree that's it a good idea to get at least a second opinion or more until you understand all your options.  After all, knowledge is power.  It should be your decision. 
Take care,
Sandra

[leapyrtwins]

has anyone else here had such fast growth with there AN ??

Tatianne -

I was diagnosed in early April 2007 with a 1.5 cm AN on the 7th & 8th cranial nerves.  By the time I had surgery on 5/31/07 my AN had almost doubled.  My docs (neurosurgeon and neurotologist) have no idea why my AN grew so fast.  It's not the norm, but it does happen.

I'm no doctor, but as others have suggested, you should seriously consider treatment in the near future.  At this point, radiation or surgery would both be possible options for you.  If your AN gets too much larger, radiation might not be an option.

I'm not saying that radiation is or isn't the treatment you should choose, but it's nice to have the ability to choose your treatment rather than have it dictated to you because of the size of your AN.

Jan 

[Charlotte Lady]

Something I read indicated ANs can grow in spurts...Whether it was from the University Of Minnesota, or Center for Base of Skull Surgery, or Mayo Clinic. 

As for what to do, do what suits you.  It's your head, your tumor, your decision. 

Me, I couldn't get it out fast enough.  I just could't stop thinking about it.  I don;t regret my decision one bit.  Certainly my life has changed.  In some ways for the better.

Donna 

[FlyersFan68]

Hi Tatianne,
  I really don't post here much anymore but I can sense and understand your anxiety. We have all been there. I believe that there are many things to consider when researching treatment. How is your hearing right now?? Does it fluctuate?? Do you have good insurance intact at the moment. Also consider your family and work situation. Will friends and family help post treatment dealing with setbacks if encountered. Most of all and already mentioned "It's your head, your tumor and your decision".  Excellent statement. I couldn't wait to get mine out too. I'll admit it. I was a lousy wait and watcher and I wasn't comfortable with radiation. I wasn't comfortable with surgery either but it's what I chose.
  The reason why I write is beacause today (nearing four years later) I can sit back with a huge sigh of relief. Knowing it's over and gone. I'm sure those that elect radiation get a simular sigh of relief too so I'm not here to suggest treatment. I am only saying that once you decide what to do you will then move on and "release the tension". You will often hear the "other side" term used on this site obviously meaning that it's over and the start of a different path. Some paths may be longer with more curves while others are straight forward but one day you'll be "moving forward" too. Tumors grow... no matter how small when discovered and even though some remain idle over time "they grow" and it's highly likely that your gonna need treatment one day. Treatment could help ease your anxiety so that's one plus. These tumors not only affect the hearing but as they grow they press on other nerves namely the facial & balance nerves. Please continue with your consultations and research and keep us updated. This is a journey nobody wants but we all walk the same path.  Steve (FlyersFan)

[tatianne]

I had a visit with my Neutologist last week and I thought to give you all an update.
He agrees with the Neurosurgeon and feels that I should wait another year and repeat the MRI..
He explained to me that my AN is complelty inside the IAC and that its still consodered to be very small and not even cloe to affecting anything critical. He metioned that my AN is now almost completly filling the IAC and sometimes it happens that the growth stops at that point and doesnt leave that confined space..however he did mention that my AN has had considerable growth and they both realize that and his gut instinct is I will need to be treated after my next MRI..the treatment they are suggesting for me is GK as long as my hearing is still functionable, if not he says that surgery would be the better option if ive lost my hearing.
Again he reminded me that I could loose my hearing at any momment, treatment or no treatment. I asked him how experienced the neurosurgeon actually is and he said that hes the top in Quebec Canada in this areas and follows hundreds of AN cases...
He also told me that 1 in 100 people are walking around with a AN and most will never know it..
I  feel better but still not 100%, unfortunatly for me at this point Im not sure where to turn for more opinions...and for me to see another doctor I would need a referral from the ones I already have. I cant leave the province because our medical expenses are covered by the government of Quebec.
I know that to even get a GK consult it takes 3 to 4 months and I would rather get all of this started now then wait another 1.5 years before I even get the consult.

[Jim Scott]

Hi, tatianne:

I understand your frustrations with the sometimes glacial pace of the Canadian Health Care system and, strictly from a non-physicians point of view, I would agree with your doctor.  With an AN, your hearing becomes vulnerable and can be lost at any time, as many have experienced.  Sometimes its gradual, as in my case (which I foolishly ignored) and sometimes it happens quite suddenly. Your doctor is telling the truth when he states many people walk around with a (small) AN and never know it.  Most of the folks posting here were once in that position.  He is also correct in stating that an acoustic neuroma tumor can cease growing and remain 'stable' (in size).  Of course, there is no guarantee of that happening and that is why he has recommended an annual MRI scan, just to be cautious.

I would venture a non-physicians opinion that this doctor is being optimistic but honest with you.   While you would do well to take a deep breath and try to relax, you should know that radiation may be necessary down the road and be mentally prepared for that, while not letting that possibility govern everything you do from this point on.  You have a small AN.  It may stop growing - or it may not.  We can relate to your anxiety but I hope you'll not allow it to dominate you.  Why buy worries?

Jim

[pearchica]

Tatianne- take care- ditto with what the others say- Annie