Wrong category for first post!

[Kathy M]

My daughter has directed me to this thread, since maybe I'm not a "watch and wait" kinda gal?  Can anyone tell I'm new to this?    Last night, I posted the following message and I can't believe all the wonderful responses from folks like me!  Thanks so much for your words of comfort and I know I will have questions for you.  Tomorrow, I'm dropping off my MRI to Dr. Tew at University of Cincinnati (he already has my faxed records), so I'm hoping that I can get hooked up very soon with my first consult.  I am noticing so many more symptoms since my diagnosis and I think the AN must be growing at an alarming rate - I think I'm going crazy!!!  Is this normal? 

My first post....
I just wanted to say hello to everyone who has responded to my daughter's posts lately about my recent discovery. Kristin has found this wonderful group of people and has been encouraging me so much with your stories, suggestions, and support.  I am pursuing 2 different facilities for consults on next steps - University of Cincinnati and Ohio State University.  Both have been very responsive and I'm hoping that once I meet with them, I will feel a bit better moving forward.  Right now, even though the rational side of me knows that this is treatable, I am dwelling on the potential losses and am very sad. 

[sgerrard]

Hi Kathy,

If you want, any of the moderators can move a post or a whole topic. Just ask.

Both of your posts would probably normally go in AN Issues, a grab bag for any AN related questions that don't fit into one of the "speciality" categories. AN Community is here for all the "off topic" stuff, like pictures of pet dogs, discussions of chocolate, and other important matters.

But most of the time, we really don't mind where you post. 

It is perfectly normal to think you are going crazy and that everything that has gone wrong in the last five years, as well as everything happening now, is due to the AN. That's half the fun of having one. It is possible that it is growing fast, but most of them grow pretty slowly, in fact. No need to worry yet.

Steve

[Jim Scott]

Kathy:

Welcome!  I'm pleased to learn that you've found the ANA site and specifically, the forums, so helpful.  The initial AN diagnosis is almost always upsetting on different levels and your feelings of impending insanity are predictable but, fortunately, fallacious.  Your first consult should be somewhat informative and, hopefully, calm some of your concerns.  Yes, the AN will inevitably lead to a few deficits but these are surmountable.  Most of us have gone through this and come out better, if a bit different.  It is not the end of the world, it only feels like it.  Try to relax a bit and keep this situation in some perspective; you have a benign tumor in your skull, which is problematic, but it is treatable.  You will not die from this (unless it is ignored).  It's a rough road but not impossible.  We're here to support you in any way we can, individually and collectively.  We've been where you are and we want to help.  Please use these forums as a resource. 

Placement of a topic is not a big deal, as Steve said.  If it's totally misplaced, we'll just move it.  No penalty.  I suspect that you'll get through this just fine but please try to stay connected here. 

Jim

[Kathy M]

Today, I received a call from OSU Med Center telling me that the neurosurgeon had reviewed my medical records and is scheduling me for a hearing eval (something more technical than that, but I can't remember the term) and an appt with Dr. Wellington (ear surgeon) so that when I see him on 12/17, all that can be done.  I guess if he didn't summon me immediately, that is a good thing?  Also, all my records are with Dr. Tew at Univ. of Cincinnati Med Center and I waiting on a call from his office.

I received my packet today from ANA (my daughter called them) and it's got some great information but I can't get all the worst case scenarios out of my head. 

When you met with your neurosurgeons for the first time, how accurate were they based on what they told you to expect after surgery to what actually happened?  Headaches, eye issues, hearing, facial paralysis/weakness?  Are they pretty good at giving you a realistic description on what to expect???

Thanks so much for your continued counsel and support.   I am ever grateful....

Kathy

[Pooter]

Hi Kathy!  Welcome to the forum!  It's a great place for information both pre and post procedure.

I'll tell ya that my doctor was pretty spot on about what to expect.  We all recover differently and at different paces and the doctors know this so they tend to qualify their "what to expect" with "well, there is a good change of this.." and "..there's a really low chance of that".  They rarely speak in terms of you WILL DEFINITELY experience X or Y at this time followed by Z at this time.

When asked how long I would be out of work, I was told 4-6 weeks probably.  At about 6 weeks, I went back to work (then I landed back in the hospital with a reaction to some meds I was on, but that wasn't normal by any stretch).  I was told that I would have some facial weakness following surgery that would "probably clear up" and at about 5 months or so it was pretty much gone. 

Ultimately, doctors don't know what kind of symptoms you'll have afterwards.  They can guess based on what they've seen and attach a probability to that for you, but in reality they haven't the foggiest what symptoms you'll have for sure.  Anyone who tells symptoms as a definite is not telling you the whole truth.  Be leary of anyone doing that, at least I would.  Be very careful to parse their words exactly.  They're very clever about saying things in such a way that you HEAR certain symptoms post-op would NEVER happen to you, but there's a chance that it will (at least theoretical).  Just go into what to expect with an open mind.  Know what all COULD happen, but don't get hung up on them because they may or may not and it's out of your control really.

I was told to expect that things may take a while to go away / get better / etc..  Boy howdee, were they right!  I was thinking going in (for whatever reason) that 4-6 weeks of facial weakness, but I was looking at 4-6 MONTHS of it.. things just heal in the head/facial region at a much slower pace than we are all accustomed to.  Know that, believe that, live that.. then, when it happens, you won't be anxious as much over it.

Hopefully that has helped some..  My personal experience tells me that they were pretty good, but also looking back I was give a lot of "maybe" scenarios that never happened but theoretically could (and have for others).

Regards,

Brian

[sgerrard]

I received a call from OSU Med Center telling me that the neurosurgeon ... is scheduling ... an appt with Dr. Wellington (ear surgeon)

For some reason,  I think that must be Dr. Brad Welling at OSU, and I think you are going to like him.
From what I have heard, he has a genuinely kind and reassuring manner, which sounds like just what you need right now.

Steve

[Kathy M]

Yes, it is Brad Welliing (I don't think I missed his name because of this AN at all!).  Thanks for all of your encouraging words.  I had myself a good cry last night (Kristin was right there with me) and hopefully I'll have a better day today.  I'm usually a very positive person, but I just can't see past all the gloom and loss coming my way - I"m surrounded by family and friends who care and are being very patient with me and I will try to get myself together.

[ppearl214]

If you want, any of the moderators can move a post or a whole topic. Just ask.

all part of the job!


Hi Kathy and welcome.  Good cries help. We need that emotional release and honestly, I am glad you did. I find, for me, if I let rip a good-honest-from the soul cry, I then regain my composure and then go full charge into what needs to be addressed.  Actually, I'm jealous you had a good cry, as I haven't had mine yet and I was diagnosed over 3 yrs ago.  But, I sat back... I blue-printed out how to take control of my AN destination, ran through each step of the blue print and did what is best for me.   Please take someone with you to the appt.... I took my best friend and thank goodness I did.... she was able to pick up on things during the meeting that I missed.  Take a step back, if need be, to allow things to absorb.  Don't let the AN control you.... you will control the destiny of the AN. 

We're here for you... and yes, us Moderators will move things around and guide you to info as well.... but most of all, we wear our too-small cheerleading outfits, do a "rah-rah-shishcoomba" and are here to help.

Hang in there Kathy. I'm so glad you found us..... when others in life don't understand what we endure (physically, emotionally, etc)... know that we do.

Again, welcome.
Phyl

[Pooter]

I agree that taking someone with you to all appointments is helpful.  I was just in a daze during all of that and Jenni was able to ask questions (that I was thinking) and hear things that I was unable to wrap my head (no pun intended) around because I was still in shock about the whole thing.  Jenni has been with me every step of the way and looking back, she was heroic and my rock during the whole time.  Take someone with you that isn't afraid to be your advocate, ask questions, and get some answers.  You can talk to them later about what it all means.

Regards,
Brian

[Debbi]

Hi Kathy-
And welcome!  Brian is so spot-on regarding having someone with you on  the appointments.  Willie, my hubby, and I went to each appointment armed with a dauntingly long list of questions.  When I zoned out, which happened several times, he was right there to take notes. 

I can relate to your comment about the increase in symptoms. I was so concerned that I was the 1-in-a-million people with a "runaway "acoustic neuroma.  Every little thing was magnified.  Once you know what to look for, you tend to find it!    Try not to worry too much because the changes are very, very slim that it is really growing at an alarming rate. 

All the comments about doctors not being able to guarantee results are also right-on.  I think you have to kind of prepare yourself for any outcome, but do try not to obsess about any of them.  For example, I knew that I had a slightly higher risk for some sort of facial complication because the docs could see that my facial nerve was curving over the top of my tumor.  But there really isn't any way to predict the extent of any of these things. 

I'm glad your daughter found this forum for you - the people here have been and continue to be an invaluable source of support to me and I am sure they will be for you, too!

Debbi, sending you a warm welcome from cold New Jersey...

[Kathy M]

All of you are like a warm blanket on a very cold day here in Ohio (go bucks and beat Michigan!).  I will take my husband and my daughter with me (if the docs permit them both to go - Kristin knows more about this than I do and she is so positive!).  Thanks so much for your honesty and your compassion.  I"m off to Kentucky tomorrow to visit family for a Thanksgiving before Thanksgiving.  I think it will be hard because they all know and they all want to help.   What are ways I can tell them to help when I don't know?  And...Christmas is coming - what are some things that helped all of you in your recovery that I could put on my Christmas list???

[Debbi]

Hi Kathy-

I'm requesting a Wii Fit for Christmas, if that helps.  It looks like a lot of fun, and you can say it is for vestibular rehab...    And, if you really want to push the envelope - ask for six months of maid service, daily meals prepared by a gourmet chef, peeled grapes ... oh, well, maybe that last is over the top... 

You know, the best thing for me post surgery was just having my family with me.  I still can't quite find the right words to tell them all how much that meant to me and how much comfort I got from each of them.  And, you obviously have a great family, so I know you will be well cared for.

Debbi, counting all my blessings...