Any young adults with AN?

[ColaBurns]

I was wondering if there were any other "young adults" with an Acoustic Neuroma and the size, location and prognosis of your tumor?

I'm 28, mother of 2 with a 4mm right side AN that was found "by accident". Mostly just having to deal with vertigo issues and sometimes headaches and facial twitching but no loss of hearing. The problem for me becomes whether or not to be "reactive" or "proactive". Do I "wait and watch" and hope this thing doesn't budge and learn how to deal with the Vertigo and headaches while knowing that there is a very very good chance this thing will in fact grow and become an issue. Or do I become "proactive" while I have very good insurance and a good job and have the surgery done to remove this thing before it can get bigger and do some major damage.

I'm just wondering what other people in my situation are thinking. Radiation is out of the question because of my age but do I really want to take the chance that I could have loss of hearing and facial paralysis within 10 years? I also don't want to take the chance of having brain surgery done if it would cause just as much damage.

Thanks for listening to my rant...just in one of those moods I guess

Cola

[Funnydream]

Sorry to hear about your AN at such a young age. My Doctor did say he removed a 2.5cm AN from a women that is 28 just last month here in Texas. So you are not alone. And I do know there are people younger than you on these forums that had large ANs removed.

HEI (House ear Institute) in LA does free conciliation if you can send them a copy of your MRI. http://www.hei.org/ Considered the best in the world. Just call em up and ask them.

Good news is you caught it very early.

I'm not a Doctor or a expert. But I had surgery because my AN was up against my brainstem. And Cyberknife has a .2 mm drift that can happen.

As someone that has been threw surgery less than a month ago. I got two chest x-rays. Front and back. And two CT scans right after the surgery. That is allot of radiation that I got. And surgery is very ugly. Allot more than I thought. I figure I would be in more pain. But pain was not a issue. Its having my head opened up and messed with. And everything that goes with that. On top of all that. I can NOT taste any thing sweet. Everything I eat taste like crap. And that's from the IV antibiotics side effects. Can last up to 6 months. Then you have a ton of other issues.

Its nice having the AN cut out. But AN surgery is the most difficult in the world. And you have lots of risk going in. I came out very lucky.

I would like to have had cyberknife and wanted cyberknife but was not ment for me. www.cyberknife.com If I have regrowth I will get cyberknife done.

But please do what is right for yourself. Research everything you can. And do what your FEEL comfortable doing.


And I really hope you get your AN under control at such a young age. Good luck.

[leapyrtwins]

But AN surgery is the most difficult in the world. And you have lots of risk going in.

Just wanted to note that although I'm not a doctor, there is no scientific proof behind this statement.

AN surgery is major surgery and it's brain surgery, but is it the most difficult in the world?  I'm not so sure.

And while it's no walk in the park, I'm not sure I'd term it "very ugly" - that's definitely a matter of opinion.  I'd have AN surgery again in a heartbeat.  I've never regretted my decision.

All types of surgery involve some risk; it's just the nature of the beast.

Also, all the testing leading up to funnydream's surgery (two chest x-rays, two CT scans) are not always the norm.  Although I did have a chest x-ray prior to my AN surgery (standard procedure at the hospital I had my surgery at), I've never had a CT scan.

Jan

[Kaybo]

Cola~
Hello!
I was 25 when I had my AN surgery and did not have children yet, but went on to have 3 curly girlies.  I have to disagree with Funnydream on this one.  While AN surgery is not pleasant...& I had almost every side effect there is...I can think of people that are dealing with MUCH, MUCH worse situations...even some on this board.  Is my life a little different than I thought that it would be?  YES!  Do I look different than I ever thought that I would at 40? YES!  But I have a GREAT life (& I am ALIVE!) with my family and friends and wouldn't trade it for anything.  I didn't have a choice about surgery because of the size of my tumor, but if I did, I would certainly look into CK or GK...I don't think that age really plays a part in it.  I would encourage you to find a Dr. that does BOTH surgery and radiation and see what they say...I know that they are out there.  Incidentally, I NEVER even had a CT scan until about a year ago - not before or in all those years that followed (obviously, I did have MRI's)!!

Again, this is a tough thing (& tough surgery) but I would hate for you to get the impression that it is the worst ever & be so scared because you have an AN.  Like Jan said, "it's no walk in the park" by any means, but it is also very treatable and anything IMO is better with a good attitude and sense of humor!

If you would ever like to talk, just PM me with your number & I'd be happy to call you!

K  

[james e]

I am not a young adult compared to you, but I feel it is necessary to respond. There are three nerves that this tumor has an impact on, hearing, vertigo and facial nerves. Your vertigo and facial nerves are being impacted, according to your post, and your hearing is probably being attacked also, and that may be a long term problem for you and you just may not be aware of it yet.

Your choices are to wait or to get it treated. This is your choice and you will figure out what you will have to do. Listen to your doctors and read this forum front to back. Lots of anxiety...but I will tell you, this may be the most difficult part of this experience.

What ever you decide to do, this is not the end of the world. MOST of the people here, from what I observe, have a good out come from being treated. It is not a brutal experience. If you have  two children, you have experienced more difficulty physically than you will from this. There is a recover period from the surgery and/or radiation treatment, but I'm sure you did not get in your bikini right after you had your kids and go to the beach. Recovery takes some time. Since you are young, that is a good jump on your recovery. It was not painful to me physically. Anxiety was my worst enemy. I would do this surgery again tomorrow, and not loose any sleep about it tonight. If you are going to be treated, get into shape and it will help you recover. Eat the right foods. Read this forum and you will see most people here have great out comes. It is rather unreasonable to believe anyone on this forum would tell you it is a walk in the park, its not, but it is highly unreasonable  that anyone here would tell you this is the most difficult surgery there is. I's rather do this again than go to the dentist.

[Doc]

You're better off speaking with your Doctor!  

[pjb]

I just had to add that I was told it was a complex surgery but not the worst... But do alot of research and speak to several surgeons and I am sure you will make the right choice in making a decision as to surgery vs radiation .

Best Wishes,

Pat

[Funnydream]

I guess I need to clarify my post. And say I'm sorry for not proof reading my post better. I failed.

The Doctor that told me it was the most difficult he could think of. (My AN was against my brainstem) He also said he has done over 200 of these ANs. And has only a 5% CSF leak rate. None of this I can prove. And I was not provided with any proof either. Mocho Doctor with cowboy boots and writes flow charts and diagrams on everything. Including my MRI film.

Thomas S. Ellis. M.D., F.A.C.S.  P.A.
Fort Worth  Brain & Spine Institute.
Neurological Surgery


As far as surgery being very ugly. This is a personal observation from my point of view only. And may reflect that I had a CSF leak that had to be fixed and I was put under the knife again within 7 days of my main 16 hour surgery.

I wish there was a place where everyones blogs are listed out. Because I got some of my best information from reading others ANers blogs. Surgery and radiation blogs.

[leapyrtwins]

You're better off speaking with your Doctor!  

Yes, definitely talk to your doctor, but keep in mind that his experiences are based on his patient's experiences not his own - unless by some chance he's had AN surgery himself.  He can tell you what his patients have been through, but all patients are different, and even though he's seen their struggles and their victories it's just not the same as having them himself.  (No offense to the doctors out there).

I totally agree with James' post, AN surgery is not the end of the world.

I'm the same post op as I was pre op with the exception of being SSD (single-sided deaf) and wearing a BAHA (bone-anchored hearing aid) - and oh yeah, I appreciate life a whole lot more now 

I have to echo Kaybo's sentiments - a good attitude and a sense of humor will take you a long way on your AN Journey; and a long way in life for that matter.

Best,

Jan

[jaylogs]

When I went and had my surgery done, the day I was getting my stitches out there was a family there at the doctors waiting to go in and see him...their daughter was 16, she was getting hers taken out in a day or two....I couldn't believe it...so young! So yeah, I guess this happens at all ages!  I often wonder how she did, as I was on my way out as she was on her way in. Anyways, I didn't answer your question but please continue to rant!!
Jay

[Lizard]

Cola,
Late to this party, but I wanted to offer a little of my own insight.  My AN was discovered somewhat by accident as well, due to headaches that did not react to medication.  The MRI that flipped my life upside down.  I was 27 at the time and my husband and I were beginning to plan a family, needless to say I just wanted that thing out of my head.  I couldn't deal with the thought that it will grow and cause more issues, as I was tolerating the few symptoms I had.  At the time I couldn't imagine trying to recover from a major operation with small children...

However, since surgery things haven't really gone as planned, mainly I'm having horrible headaches after 2 years post op.  I'm confident that I will find relief its just been a long road.  I just turned 30 and still no children, my thought process has somewhat come back to haunt me.  I was of the mind to get the booger out, and then I'd be ready to go on and start a family, but it never occurred to me that I may have lingering problems that would keep me from becoming a Mom.  Its tough, I'm not going to lie, but I will find my relief! 

Hopefully you make your decision and are comfortable with it, you must go with your gut...thankfully because most AN's are slow growing you have time on your side.

Good luck with your decision and please know we are here to support you whatever you decide.
Liz

[Lizard]

K, so....after rereading...
I hope my comment above doesn't seem to negative, I was just trying to demonstrate how the AN has affected my life and as a young person with so much to experience it has greatly changed my life path.  It has forced me to grow up, but in different ways than I expected.  I am not unhappy, I just wanted to lend my experience and express that there are many factors to consider when deciding on a treatment plan.

Liz

[arkansasfarmgirl]

I was diagnosed at 34.  My 2 kids were 3 years old and 6 weeks old at the time.  My tumor was supposed to be 4.5 cm at diagnosis, but turned out to be much bigger when they took it out a few weeks later (recently found out that it was bigger than 5.25 cm, but nobody has ever told me exactly how large it was).  It was pressing on my brain stem and about to completely close off some drainage thingy in my head, so they had to get it out asap.

I went to House Ear Institute in LA for my surgery with Dr Brackmann.  That place was awesome and I loved Dr Brackmann.

Brain surgery is the hardest thing I've ever done, and I suspect it was made harder by my determination to keep breastfeeding my baby.  Which was successful, I might add (I didn't wean until she was 18 months!!!!).  ;-)  The first 2 weeks were super tough.  A month out, I was doing better but still definitely not back to myself, but by the 6 week mark I was feeling pretty good and was able to start riding horses again.  3 months post op, I was traveling the country jumping onto strange horses, shopping for a new barrel racing prospect.  6 months post-op, I felt completely back to normal.

The only complication I suffered was facial paralysis.  My facial nerve had to be cut and grafted to get the whole tumor out, and so I was without movement on one side for 6 months.  I have made a remarkable recovery on that front, nearly 2 years after surgery.  I highly recommend accupuncture!!  Honestly, going through facial paralysis was more challenging for me than the surgery itself.  The emotional trauma is something that will stay with me, whereas recovering from surgery seems like a bad dream.

I had my first post-surgical MRI this fall and it was clean.  Woohoo!

That's my story, hope it helps.
Vonda

[Kaybo]

Lizard~
I don't think negative, just honest!  I struggle with what to share because I didn't have the sunshine & roses outcome but IT CAN BE OVERCOME!!  I'm sorry that you have not been able to start a family because of your headaches...I know that heartache.  I had my girlies AFTER surgery but had 4 miscarriages before I finished my family!  We should talk if you want.  PM me your number if you are interested!

K   

[Jim Scott]

Nicole ~

I'm about 30+ years past being a young adult but I can empathize with your concerns, all the same.  As Liz and others have pointed out, there is a risk no matter what you do; surgery, radiation or simply observe.  Some surgery patients have a great outcome (Jim raises his hand) and some not-so-great.  That's the risk inherent in AN (and almost any) surgery.  There are simply no guarantees.  Having a doctor that is very experienced with AN removals and shows compassion for your post-op quality of life is paramount.  I had a doctor like that and I'll always believe it made the difference because he really cared about my post-op quality of life (and said so) not simply removing the tumor and on to the next patient.

Based on the size of your AN, I would suggest you consider observation ('Watch-and-Wait') and should growth become evident, go for the surgery, if that is your choice.  Like others, I disagree that radiation is a threat because of your age.  It is very precisely focused and shouldn't be a cancer risk but some doctors believe it is and advise against it.  However, it's your body and how you choose to address your AN is a choice only you can make.  If surgery is that choice, we support you in that and hope these posts (and the other forums) can help you make a decision.

By the way, ranting is allowed here. 

Jim