Any young adults with AN?

[Kathleen_Mc]

Cola: If your tumor is small enough and not needing immediate attention you have time to spend to find the right choice for yourself.
Spend your time reading all that you can, investigate the possible implications of each form of treatment that is of option to you as well as that of "waiting".
When my 1st was found I hadn't anytime to consider anything, surgery had to be done ASAP and that was that.
When my regrowth was found it was small and I had time to wait and watch whilst I considered my options, what was best for me and my family.
I was unable to deal with this thing growing ion my head and opted to have surgery again, I had it  outwhile the thing was still small and so were my children, I figured it would be easier on me physically and psychologically  I was very bothered by it, constant worry. I also felt to would be psychologically easier on the children if I had it done before they were old enough to fully understand what was goin' on. It turned out for the best for us.
I was offered gamma knife but I didn't want that route because I would still have to wait to know if was effective and I couldn't deal with the worry anymore.
Which ever your choice I believe you must be comfortable so once you're on the other side of treatment you not thinking "oh no.....I should have done this differently"
Kathleen

[pjb]

Cola: If your tumor is small enough and not needing immediate attention you have time to spend to find the right choice for yourself.
Spend your time reading all that you can, investigate the possible implications of each form of treatment that is of option to you as well as that of "waiting".
When my 1st was found I hadn't anytime to consider anything, surgery had to be done ASAP and that was that.
When my regrowth was found it was small and I had time to wait and watch whilst I considered my options, what was best for me and my family.
I was unable to deal with this thing growing ion my head and opted to have surgery again, I had it  outwhile the thing was still small and so were my children, I figured it would be easier on me physically and psychologically  I was very bothered by it, constant worry. I also felt to would be psychologically easier on the children if I had it done before they were old enough to fully understand what was goin' on. It turned out for the best for us.
I was offered gamma knife but I didn't want that route because I would still have to wait to know if was effective and I couldn't deal with the worry anymore.
Which ever your choice I believe you must be comfortable so once you're on the other side of treatment you not thinking "oh no.....I should have done this differently"
Kathleen

Kathleen I just wanted to say you have gone through so much you are a strong woman and I wanted to ask you what size was yours the second time that you chose to go through surgery again ?

Best Wishes,

Pat

[leapyrtwins]

Lizard -

somewhat off-topic here, but don't give up on your dream of a family.  It took me almost 9 years of trying, hundreds of thousands of dollars in medical procedures, and 2 miscarriages to have my twins.  All this was long before my AN was diagnosed, but my point here is keep the faith.  I'm hopeful you'll find a doctor who can solve your headache issue and you can go on to live the life you want to live.

Prayers,

Jan

PS - Amen to your opinion, Donnalynn, I agree whole-heartedly.

[lori67]

Talk about late to the party!  Sheesh... story of my life!   

Anyway, hello, welcome and all those good things.  I don't have any words of wisdom that haven't already been shared here but thought I'd throw in my 2 cents in case you're interested.  I had my surgery when the youngest of my children was 9 months old.  I have no hearing in one ear and facial paralysis.  I can honestly say that I've had dental cleanings that were worse than my surgery and recovery from my AN surgery.  I had great doctors and nurses who kept any pain under control, no real setbacks, a great deal of motivation to get better (my family) and more importantly, a positive attitude about the whole thing.  I've had many less than pleasant things to deal with in my not-so-young-anymore- adult life - but I choose to look for the silver lining.  In the case of my AN, my silver lining was that at least it was me and not one of my children.  And, of course, the great AN friends I've made along the way!   

As far as AN surgery being the worst there is - I am not a doctor, but I am a nurse who has worked in the OR - it's not even close.

Please don't be scared to death or think the worst will happen to you.  Your doctors will guide you towards the right decision for you and you'll know when it's the right decision.  Take a breather and enjoy your weekend and your family!

Lori

[Jim Scott]

PPSS* --* I just have to say ONE MORE thing.....
Us dear souls here on the forum are just patients who have some experience on AN's, the diagnosis, and treatment process, that we have gone through. Thus-  NOT making us DOCTORS but people who truly care, and want to help others through this very difficult journey.
We NEED NOT have to state the disclaimer anylonger that " "we are not Dr's but"....lets NOT allow this one person to dictate our full hearted intentions here.

Donnalynn ~

Thanks for your input on this issue.  I wholeheartedly agree with your charitable characterization of the people that post messages on these ANA forums but I also believe that making the disclaimer that we are not doctors, while certainly not necessary in every single post, is a prudent approach intended to make it clear, especially to 'newbies', that whatever we are advising/suggesting or offering an opinion on is based on our practical experience and that 'medical' questions, which we get regularly, need to be referred to an actual doctor and any advice we may offer is strictly as non-professionals.  Using the now-hackneyed phrase "I'm not a doctor..." is not to appease anyone but to simply make a necessary statement of fact that warns the reader not to accept a suggestion/advice/opinion they read here as equal to that of a trained, licensed physician.  It need only be used when making direct suggestions about treatment, etc, not in every post.  I intend to continue using it when I deem it necessary for clarity and as a qualification that I trust will serve as a caution to the reader and in the process, protect the ANA from problems that could develop over a misunderstanding.  However, that is my choice and has no bearing on what other forum posters choose to do in this regard.  Thanks again for your genuine concern.  You're a very valuable member of the ANA forums and your comments are always appreciated. 

Jim

[Lizard]

Thanks Jan and Kaybo (you guys are the best  )...I know deep down that I will have a family, but of course I get frustrated and its just been one of those weeks.  My sister-in-law is due in a month or so with her second, and I guess I just get that "I want a baby" feeling when I'm around her. Damn that biological clock!
Thank God for my dogs 
Liz

PS sorry to derail the thread...

[Kathleen_Mc]

Pat: I never asked measurements with the original growth or the regrowth, I know the regrowth was growing about a mm per year and when removed was still confined to the auditory canal.....surgery fro regrowth was a short one, something like 4 hours......the original surgery was something like 15-16 hours.
The benefit of having the growth removed when I did was 1. less upsetting for my children who were too young to understand
2. a shorter surgery making recovery easier
3. during the 1st i had already lost 7 to 10th nerves so I had nothing more to loose
4, no more psychological stress of having it there!
People always see only that I was strong to get through all this.....I had the regrowth removed out of fear! To me having a second brain surgery was less scary then letting the thing continue to grow.....mainly because the original tumor was mis diagnosed for so long and not found until I was becoming critically ill!.
It came two to choosing between the two "evils"
But thanks anyway
Kathleen

[pjb]

Pat: I never asked measurements with the original growth or the regrowth, I know the regrowth was growing about a mm per year and when removed was still confined to the auditory canal.....surgery fro regrowth was a short one, something like 4 hours......the original surgery was something like 15-16 hours.
The benefit of having the growth removed when I did was 1. less upsetting for my children who were too young to understand
2. a shorter surgery making recovery easier
3. during the 1st i had already lost 7 to 10th nerves so I had nothing more to loose
4, no more psychological stress of having it there!
People always see only that I was strong to get through all this.....I had the regrowth removed out of fear! To me having a second brain surgery was less scary then letting the thing continue to grow.....mainly because the original tumor was mis diagnosed for so long and not found until I was becoming critically ill!.
It came two to choosing between the two "evils"
But thanks anyway
Kathleen

Kathleen thank you for your response I had a 1 cm. removed July 2009 and now found out I still have 3mm left behind July 2010 so I am confused why so much was left and what to do with it ... At first I thought maybe CK now I am not sure like you said I rather have it totally gone and surgery will be shorter... I am having trouble with the titanium plate and screws so maybe just have it all taken care of... I sent my papers to HEI, I am not a flyer but I felt this time around maybe I just might go I could look into traveling by train...
So glad that you made the right choices in not having to worry about anymore regrowth.

Best Wishes,

Pat

[Nickittynic]

*raises hand*

I was 23 when my AN was found, also by accident while in the ER. My kids were 3 and almost 1 at the time. I had my surgery a month later, just a couple weeks after my 24 birthday. My situation was different in that my tumor was a different size and up on my brainstem, and the docs wanted it out relatively quick. In hindsight, though it probably wouldn't have changed anything, I wish I had more time to research before I went into surgery. Since you have the time, my only recommendation would be to read as much as you can and talk to a number of different docs to get their advice. Only you can ultimately be the one to make a decision, but there are a lot of us out there who can talk about our experiences if you think it will help you.

Feel free to check out my tumor blog - http://buginthebrain.blogspot.com, and PM me if you want with any questions. There are some things I don't talk about too much on the blog (since everyone I know in real life, including my manager at work, knows the address to it) but would be happy to discuss via PM or email (ex: my kids reactions to having mommy 'sick').

[Adrienne]

Hi Cola,

It's a funny thing commenting on this post surgery, as my response and thoughts were much different prior to surgery.

Upon discovering mine, I just wanted it out.  And fast.  The faster, the better.

After having mine out, I have somewhat different thoughts on the matter.  I would choose the exact same course of action for myself (based on the size of it), but for some reason I have different thoughts about *other* people and what they should do (odd, I know)-more specifically when it's a small one.  I suspect I'm biased after hearing my neurosurgeon and his team speak at a conference 3 months after my surgery.  I value his opinion greatly, and to sum it up he said that A) Unlike most other surgeries, with this one the patient nearly always comes out worse than they were before surgery ('worse' being a relative term.  I guess technically I'm worse b/c I lost some of my hearing some other side effects, but having said that, I feel GREAT and much better for having it out of me!), and B) With the small AN's his preference is nearly always to wait and not rush to surgery or radiation.  Since they are slow growing, he felt that a baseline should be established (ie: in a couple of months does yours show growth?  If not-why not leave it and keep checking......maybe it won't?  If it does, you can deal with the decision making at that point.....).

I thought I was young when I found out about mine (36).  Since reading the board, I now know I'm 'middle aged' for this thing.  LOL!

Good luck with your decision!
Adrienne

Deciding what to do is so personal.  Will it make you nuts knowing it's in there and thinking about it all the time?  Will the stress of it cause you additional health issues?  Or can you calmly tell yourself that most of the time it's slow growing and you have time on your side?

[ColaBurns]

HI Everybody. Thank you so much for your posts it really does help me alot. I don't like the situation I'm in with knowing right now if I were to have it done it would be 100% covered by my insurance and I would still get paid for the 6 weeks I'm out. I'm afraid if I wait and something (knock on wood) happens I wont have this great insurance to cover surgery. But then again why have unncessary surgery? I have an appointment next month with the Mayo clinic and their AN Specialists so I will wait to see what they say. I've been having some crazy ringing of the left ear for a few months but the tumor is on the right so of course now I'm afraid I have another tumor on the other side...I think the stress is just starting to get to me. I want to have another MRI done, mostly for peace of mind but also to determine exactly where this tumor is and if it causes all of my symptoms. Thanks again!

[ColaBurns]

Hello everyone, its been quite a while hasn't it? So, had my 3rd MRI and all I was told by a "nurse" was "NO CHANGE". Not even the doc called to tell me. My dizziness and disequilibrium has just completely taken over my life. I refuse to drive unless necessary because I always feel like I'm "drunk driving". I seriously feel as though I'm a bobble head and even a couple of times I freaked out at work thinking we were having an earthquake or something because I could have sworn the ground was moving (when it wasn't). After discussing this with my husband I've decided to get a 2nd opinion with the Barrow Institute in Phoenix. It may be a while, but I want to at least talk to someone face to face who can hear about my balance issues and go from there. If they recommend surgery I may actually be up for that but if they say watch and wait then I know for sure I am supposed to watch and wait. I hate waiting though, I even called the docs office 4 times just to get my results (and that was less than 24 hours after having the MRI done lol)...hope everyone else is doing well

Cola

[CHD63]

Hi Cola .....

A couple of things come to mind that might be helpful.

1) I always keep my own copies of all MRI CDs and reports.  You are entitled to both and should be able to obtain them by calling the imaging facility and making the request.

2) The same MRI can be interpreted quite differently by trained radiologists and/or other medical professionals, e.g. neuro-otologists or neurosurgeons

3) There are several places around the country who will give you a complimentary ("free") evaluation.  House Ear Institute in LA, Stanford U in CA, UPMC in Pittsburgh, and others.

It is good that you are going for another opinion.  The size of an AN is not the only factor in how much distress it can cause ..... location of it is equally important.  You need some answers as to why you are experiencing the level of balance issues you are having.  Try to eliminate caffeine and see if that helps ..... some people really react to it.

Hard as it may be, try to relax until you have some more opinions.  Stress is known to make everything worse.

Many thoughts and prayers.  Let us know how you are doing.

Clarice

[Itheus]

I'm glad this thread was bumped up, thanks Cola.

There have been some very interesting responses in here.  Myself - I have an 8mm AN that is scheduled to be surgically removed (mid fossa) on July 21st.  My only side effects thus far have been significant hearing loss in right ear with tinnitus, and some fatigue. 

Honestly, the quality of my life hasn't been impacted too much at this point.  It appears there's a significant chance that it will be impacted post-surgery.  I've accepted that.  What I'm reading more and more of is the long term effects.  This scares me.  Almost to the point where I'm reconsidering to a 'watch and wait' type of status, especially since I don't have what I consider life altering side effects.

But I'm completely torn.     I don't have any kids yet, but would like them to try in maybe a few years.  I'd kind of like to have this taken care of by then.

I know nobody can tell me what to do, but I'm really trying to find validation either way.

[Cheryl R]

Hello and also remember that you miss many of those who do well and are gone from here after a time.    Right now is the hardest time  as one does not know what will happen and the worse fears are there.   After, you know if there are any, and can adjust to dealing with them in time.
If there is some chance of a post op isssue due to tumor location ,then than issue will still be there later also and perhaps worse.   But this has to be what you feel comfortable with and your own choice!     Good luck with whatever it is!                     Cheryl R