I'm new!

[jk327]

Hello everyone!  My name is Jamie and I am 20 years old.  I was diagnosed with an acoustic neuroma (19x10x9mm) about a month ago on August 4, 2010.  Approximately one month prior to my diagnosis I suffered from acute severe hearing loss in my right ear.  After being placed on a strong antiviral medication, my hearing improved significantly, but was still not normal. When meeting with my neurosurgeon shortly after diagnosis, he made it sound as though surgery would be my best option based on my age and the fact that I am still able to hear.  I am meeting with the ENT that he partners with for surgery next month.  My problem is that my doctors and my family are in Indiana, but I go to school in Missouri.  On average, how often to patients meet with their surgeons prior to surgery?  In addition to the hearing loss, I am also suffering from constant tinnitus as well as frequent headaches and vertigo.  Due to the vertigo, my mother feels unsafe with me making the nine hour trek (each way) back and forth for appointments.  Optimally, I would like to schedule my surgery for Christmas vacation, as it is the longest break I have, at 3.5 weeks (4 if I get my finals moved).  I have read that the recovery time is around 4-6 weeks.  In order to keep my scholarships and remain on track for medical school, I really cannot skip a semester.  Would be at all feasible for me to go to class after four weeks of recovery?  Thank you all so very much for your help!

[tenai98]

I would consult with a radiologist as well...recovery with surgery varies from patient to patient. 
Do your research.
JO

[CHD63]

Hi Jamie and welcome to this forum!  Sorry you had to find us by way of an AN diagnosis, but glad you found this site.

If you have not already done so, you need to send for the free ANA materials (see  http://anausa.org/sc/apps/forms/forms.cgi  ).  They are extremely helpful and reassuring.

A very important thing to remember in treating your AN is to determine how much experience your physicians have in specifically treating ANs.  Because they are so rare, it is vitally important that you have the most experienced and best care you can find.

Another important thing:  even though you are young, you should be very much involved in the decision-making process for type of treatment.  Doctors, family, and friends can all give you their opinion and advice, but you should be the ultimate one to decide.  That being said, much research is being done on long term effects of gamma knife and cyberknife for treating ANs in younger people.  The radiation being used today is much less and much more finely targeted so it carries much less risk than even ten years ago.

Your AN size is still in the range that you have options for treatment.  Just keep in mind that surgeons almost always recommend surgery and radiation specialists almost always recommend radiation.  Much depends on the specific location of your AN and the speed it is growing.  It never hurts to get multiple medical opinions (many places in this country will review your MRI and give an opinion for free).

Regarding school ..... yes, recovery from surgery normally is around six weeks.  However, there is great variance in how you feel at six weeks out.  Many people have returned to work in six weeks ..... if they had no complications.  In my case, at six weeks out I was fully recovered from the "surgery" part of it.  I still had significant balance issues and was not back driving yet.  However, since you are younger than I am, you probably will not have the same degree of balance issues (the more you walk and exercise post-op the more quickly your brain adjusts).  No one can really say if you will feel well enough to go to classes four weeks post-op.  So much depends upon your post-surgical outcome, your overall general health going in to this, and your own motivation to quickly recover.  One of the universal aspects afterwards is fatigue so it also depends upon the course load you are expecting to take.

Hope all this helps.  Some of the younger college students should post here before long.

Best thoughts.  Clarice

[Kaybo]

I definitely think that you need to consider 2 things which could GREATLY influence what type of load you will take next semester (& if you are pre-med, I would think it would be "heavy")

#1 - ALL YOUR OPTIONS - I agree with Clarice on checking out CK and GK (& anything else they are doing now).  Don't do surgery just because you are told that is what you should do.  If you are pre-med, this should be a real-life experience that will help you down the road.  KNOW ALL YOU OPTIONS INSIDE & OUT!!  Recovery time could GREATLY be influenced by this!!

#2 - KNOW THE EXPERIENCE OF YOUR SURGEON - Again, a relatively simple operation can be "botched" by someone that doesn't have much experience.  AN are relatively rare and some Dr.s think it is kind of neat to get to operate on them...even if they don't have much experience.  Don't be afraid to ask for level of experience!!  This alone could have a GREAT impact on the recovery!!

Good luck and welcome - please feel free to ask us any questions!
K 

[mk]

Here is another thought. Recovery really varies from person to person and there are not guarantees, regardless of whether you chose surgery or radiation. Couldn't you wait until the summer vacation, so that you have more time to recover? from the size of your AN it seems that there is no urgency, although of course your doctors would be able to judge best.

Marianna

[moe]

Hi Jamie!
Welcome to the group, sorry to hear of your AN, especially in the midst of school, and pre-med at that. That is a TOUGH load to carry. You sound amazing already!

I agree with the previous posts about really making sure you research all options. Your tumor is considered small-med I think, and time IS on your side. (Unless the vertigo is disabling.) Are you on medication for the vertigo?

Brain surgery is a BIG deal, and there is no guarantee what the recovery will be like. I personally feel Christmas break wouldn't give you enough time to fully recover so that you can go back to that heavy pre-med load. The fatigue factor lasts a while, and that may impede your studies.

BUT then you sound amazing, and may not be a problem.

Also a good idea to think about possibly postponing until the summer, if possible. I know you just want the booger to be gone! Where are you going to potentially have your surgery?
Between the forumites, there may be someone who can give you their experience if they had the same MD.

It is a crazy, unsure, stressful time for you I'm sure. AN's are very slow growing. Unfortunately mine was soooo slow growing I didn't know it was there (had been there for 20 years they said!). So you know you have the booger, treat the symptoms as best you can and research all options(kind of like another class).....

We are here to support you in whatever you decide, but we also like to put in our 2 cents worth just so people understand all the ramifications.

Hang in there, let us know how you continue to do

Maureen

[Jim Scott]

Hi, Jamie, and welcome to the ANA discussion forums, although I'm sorry you've been diagnosed with an acoustic neuroma.  The ladies (Clarice, Jo, Maureen, Kay & Marianna) have given you a fine welcome with some very good information and suggestions that I cannot improve on so I'll simply wish you the best and remind you that, although we're not doctors, our members have a wealth of practical experience they are eager to share with those who can benefit from it.  As you pursue a treatment decision I hope you'll consider this site a resource and think of us as your 'AN family'. 

Jim

[pjb]

You have definitely received great information from everyone the only the thing I have to say is research, research, research and remember it is a slow growing tumor so you have some time to schedule whatever YOU and your family choose after weighing all your options.

Best Wishes,

Pat

[leapyrtwins]

Jamie -

I would get the information from the ANA, educate yourself about your options, and go from there.

I also highly recommend consulting with a doctor who does both radiation and surgery - not one that just does radiation or just does surgery.

I don't think that watching and waiting for more than a few months is a good idea (1.9 cms is not small - it is medium) but that's just my opinion.  Although most ANs are very slow growing, on occasion they do grow rapidly.  I was a lot older than you when I was diagnosed (45 1/2) but my AN was 1.5 cms and my doc told me he wouldn't wait more than a few months to treat it.  It was good that I took him advice - when I had my surgery approximately 6 weeks later my AN had grown to almost 3 cm.  I'm an unusual case, but it does happen and the younger you are, generally the faster an AN can grow.

Also, if your symptoms get worse - for example, if your hearing should start to diminish - you should seek treatment as soon as you can.  Most doctors won't use radiation to treat an AN that is 3 cms or larger, so if nothing else, you want to make sure you monitor the size of yours through periodic MRIs.

As others have said, recovery time from surgery varies.  I was back to work part-time 2 1/2 weeks post op and full-time at 4 weeks.  I didn' t have any permanent side-effects other than SSD.  But everyone is different and it's hard to predict what your AN Journey will be like.

Jan

[jaylogs]

Hey Jamie, welcome to our little club...sorry you had to join it though!   I don't have anything more to offer than what everyone else has said...although I noticed you were concerned about the tinnitus...just know that more than likely you will have that for life.  Even after any kind of procedure, most people still has it.  Even if you lose your hearing entirely, you'll still have it...kinda weird, but that's how it goes with the brain!  Keep us updated on what you decided to do though, we are all here for moral support and advice...take care!
Jay

[msuscottie]

Hi Jamie,

Welcome. I was 28 when diagnosed, so I know (somewhat how youre feeling). Hang in there and get a few opinions. The most important advice I ever recieved was to keep meeting with Dr's until you finally felt comfortable with one. I had the best and it made my crazy ride so much more tolerable.

Let me know if you need anything... 

[Lizard]

Jamie,
Welcome to the forum!  Sorry you have to be here, but you've come to the right place.  A lot of good advice above from all, but I want to reiterate how important it is that you are comfortable with your Surgeon's experience.  I was only 27 when I was diagnosed so I know how hard it was, and I was also getting my MBA at the time (no as intense as your program) and I had to take 2 semesters off due to the surgery and the recovery.  I had planned on going back for the spring semester, but I had very bad headaches which kept me from being able to read.  Unfortunately it sounds like you have some symptoms that might keep you from watching and waiting until you have finished school, because I would have recommended that approach instead due to your age and having what?  One more year of school left?  Hopefully whatever treatment you choose goes well and you can begin school again in January, but make sure you have other options and I'd have a serious talk with the school about your medical condition and its affect on your learning.  There has to be some sort of loop hole that allows you to keep your scholarship if you have to take medical leave...even though you are planning on going to medical school and you need to graduate with your class there must be something they can do if necessary.  Who knows?  You may be one who recovers very quickly, but just make sure you have a backup plan.  Brain surgery is something that is very unpredictable and each person reacts quite differently.

Good luck to you with this difficult decision and remember we're here, no matter how insignificant or silly the question or concern may seem.  We've all be through the same emotions you are feeling now.
Take care,
Liz   

[Doc]

Sorry to welcome you to the AN Club. One quick note. I went back to work 30 days after surgery to remove my nearly 5cm x 5cm AN that included a three week hospital stay. For me, that meant getting on airplanes etc. That's not to say you'll be able to do the same. Just know that we're all different and because you are so young, you stand a better chance than most of enjoying an accelerated recovery. Not to say you will, just saying.

Wishing the best!

Take Care!
 
Doc