Just wondering.....

[Carson]

Being new here and newly thrust into the information highway on AN I am wondering.....

What is one thing that you know now that you wish you would have known before your treatment??

[Kaybo]

Well, I had mine so long ago and it was so rush, rush that we never knew that I would be deaf...would've been nice!     Aside from that, I would have liked to be more prepared for the extreme fatigue.

K

[texsooner]

Hey Carson. One thing I wish I had known(but you already do) is that this forum existed. There's a wealth of information here from many good folks that are willing to share their AN insights. Personally, I wish I had more information about the possibility of eye problems.....I never gave that any thought.  My surgery went great and I'm physically pretty much back to normal except for my dry eye issue. I'm still learning about how to deal with this.

Patrick

[GeorgiaMei]

Hi Carson.  I guess I would have liked to have known that it might be a longer process than originally described. I went through months of anxiety that recovery was taking longer than the month I was told it would take.   Good luck!!    Karen

[cin605]

i wish i had known about the lenthy recovery  time on balance issues.

[GM]

That MRI's can be read differently by different docs...and even by the same person. 

This caused much stress for me in the early years until I started to measure it myself on my MRI CD-ROM and couldn't find a difference.  It wasn't until I asked why everyone is saying different things (I deal with two docs...retired military here), that I finally got answers.

The moral of the story is be an EDUCATED PATIENT...and ask questions!!

GM

[yardtick]

Headaches, facial pain and fatigue   Oh yeah, finding a Doctor who was qualified to treat me.  It took me over a year.  Of course it was this forum that helped me find the Doctor

Anne Marie

[Sue]

Really good question, Carson!  I'm looking forward to seeing what everybody has to say.  I can't think of anything to add, except I wished I'd have had prior knowledge that there was such a thing as Acoustic Neuroma, because then maybe I would have also gotten a diagnosis sooner.  I wish I had thrown a fit in my ENT's office and MADE him consider ALL the options.  I didn't and my diagnosis was delayed because of it.  I am always going to wonder if the facial numbness would never have been an issue if I'd been treated a year sooner.  Maybe I would have gotten it anyway, but then again, maybe not.  I'll never know the answer to that one.  That's really the only thing I can think of that I regret.  Maybe asking the doctor about sleeping pills when the steroids prevented me from sleeping that first week after my GK.  I guess I have two regrets.

Not too bad, considering.

Sue in Vancouver USA

[lori67]

That is a great question, Carson!

I guess I wish I was better prepared for the facial paralysis and the eye issues that come along with it.  I was told it could happen, but I think I was so focused on the brain surgery part that I didn't really take the time to find out what facial paralysis really involves.

And I wish I had known about this forum prior to my surgery.  That probably would have clued me in to what was ahead.  Better late than never though!

Lori

[leapyrtwins]

I wish I would have known about the ANA in general - and this forum specifically - prior to my surgery.

I had no idea these wonderful resources existed until 10 days post op when I just happened to pick up a brochure about the ANA in my doctor's waiting room.  I truly think it was fate, since the next time I had an appointment with him all the brochures were gone and they were waiting for a new supply.  Guess I just had good timing 

I mailed in my membership check, received the ANA's printed material - which included a WTT (willing to talk) list - and the rest is history.

When I was diagnosed I felt so scared and alone, since no one I knew had even heard of an AN - much less been diagnosed with one.  Finding the ANA and the forum was immensely gratifying to me because here is a whole group of people who can relate to what I've been through. 

Jan

[wendysig]

Hi Carson,
My incision started leaking about 1 1/2 weeks after my surgery and continued to leak until two or three weeks ago.  This was something I never expected and it gave me a couple of scares, but was more bothersome than anything else.  I never had an infection or CSF leak , I was just leaking fat (from my head not my belly incision) and serous fluid.  When this started my doc told me this only happens to 10 - 20% of patients -- as I've always said, I always have been an overachiever!   Other than this one hiccup, I felt so well informed by the time of my surgery I had run out of questions.  Everyone here was great about sharing their knowledge and experience, I did countless hours of research on my own and my doc was amazing.  He gave me his e-mail address and encouraged me to send him any questions I had, both before and after I decided on my choice of treatment.  I kid you not  when I say I sent him well over 100 quesitons and he answered them all within  6 - 12 hours  of receiving my e-mails.

Wendy

[Omaschwannoma]

After my surgery I continued to have "bouncing" vision while walking but thought this would go away eventually--it did not. 

Oscillopsia (visual field bounces) is not a normal symptom after 6 months time.  I was unable to describe my symptoms to my treating surgeon so he was in the dark.  All I could say to him was, "If you could see what I see you'd know how awful I feel."  He like everyone around me kept telling me to give myself more time. 

It took three years to get proper diagnosis and another surgery to help with this problem. 

[mimoore]

That is a great question, Carson!

I guess I wish I was better prepared for the facial paralysis and the eye issues that come along with it.  I was told it could happen, but I think I was so focused on the brain surgery part that I didn't really take the time to find out what facial paralysis really involves.

And I wish I had known about this forum prior to my surgery.  That probably would have clued me in to what was ahead.  Better late than never though!

Lori

Oh I totallly agree with Lori. Every last word.  Be prepared for anything, I was told too but thought oh doctors have to give you the worst case senarios but its not going to happen to me. I was devastated when I woke and found out I had facial paraylsis AND I didn't not know that the eye was affected. I am in a good place now, it took a while. Of course I want my face back but am really getting more comfortable. At first I really wanted to hide for the time it takes for my nerve to recover but guess what life goes on...and I can curl up in a ball and wait or live my life. I choose to live my life.
Michelle 

[marjoryb]

I wish I had known how debilitating and painful the "possible headaches" would be.   I also wish I had known that recovery would take years (for me, it's now been almost 2 1/2 yrs.   I wish I had know that I would suffer from fatigue and that the fun things I used to do - like running, tennis - I can't do because of dizziness.   I wish I had known how dramatically my life would change.

Marjoryb

[leapyrtwins]

majorityb -

I'm sorry to hear you are having a tough time - especially with the headaches.

Have you ever checked out Capt Deb's posts about her headaches?  If not, you should.  She finally found relief from them recently.

I think Topamax and nerve blocks have been working well for her.

Jan