Date is set for surgery:)

[Sobes]

Hello from WI everyone!

I have a date set for middle fossa on Dec. 22 with Dr Pyle and Dr Baskaya in Madison, WI:) Will be so wonderful to be on the other side of this! It seems as though a few of my symptoms have gotten worse since diagnosis (last few days actually). Mainly the balance issue...it is quite bad at times   This brings me to ask a few questions: Knowing now that this AN exists:

                          - Is it possible that I am creating almost a "placebo" effect...thinking things are or have gotten worse just knowing it's there? 
                 OR
                          - Could the tumor actually be growing a little?

         

[Cheryl R]

Yes and yes.         There is the possibilty of both of those!         Plus it wouldn't need to be much more of growing to cause more symptoms.      Your other side might be working harder now to compensate for what is happening to the balance nerve with that darn tumor causing problems.             Plus once we have become aware of what is going on and it is not all in our imagination makes it worse!              Hang in there and know the end is in sight for getting rid of it.               Keep walking to work on balance even when it is hard.                     I wish you well!                     Cheryl R

[Debbi]

As Cheryl said - yes and yes.  I found that, once I knew I had a balance problem, I noticed all kinds of things that I hadn't noticed before.  Whereas before, I might chalk it up to being a klutz, after diagnosis, every stumble became an AN related event.   

Glad you have a date.  If you're like most of us, you'll have a million other questions between now and then - so ask away.

Debbi

[Sobes]

Cheryl and Debbi-

Thank you!! That helps to keep it all in perspective. And yes Debbi, surely there will be many, many more questions! lol It really is good to know that it isn't all just the imagination...all this time I really thought I was going a bit bonkers. That makes the diagnosis bitter-sweet doesn't it?! And of course, it could be SO much worse! Does anyone else here feel overwhelmed (in a good way) by the comfort, support and friendship here? It is so good to know that people still take the time to show they care about others. I am still trying to figure out how to navigate here...getting better though:) I cannot thank you all enough for all of the support and guidance here   

Bren~

[Jim Scott]

Bren ~

Congratulations on obtaining a surgery date.  Reaching this point following diagnosis and treatment/doctor research is a major milestone on the 'AN journey'...well that and getting the date entered on our AN Treatment Calendar, which has already been accomplished, so you're good to go. 

Cheryl and Debbi answered your very relevant questions adequately and I'll agree with them that ANs do grow and because of their location, as Cheryl noted, even a slight expansion can increase your symptoms.  However, once made aware of the tumor and it's ramifications on balance and other functions, it's easy to become near-paranoid about even a slight change and immediately assume the AN is growing.  Either way, it won't be around much longer!   I can clearly recall being in the hospital the days following my (successful - uncomplicated) surgery and wishing it was all far behind me.  Now, it is.  Time passes and before you know it, this entire episode will be a memory.  I'm confident you'll do well.  Meanwhile, try to keep busy - and know that many folks around the country (and overseas) will be thinking of and praying for you now, on the Big Day and during your recovery.   

Jim

[lawmama]

Bren,

Congratulations on your surgery date!!  Although it isn't exactly something to look forward to, it is at least a date that will be the beginning of the end of this.    
I know you have thought long and hard about this, so I'm sure that you have made the right decision for you. 

And I have noticed more symptoms now.  Some of them I think I just never noticed before (like how loud sounds HURT my left ear), but I think the dizziness has gotten much worse.  I'm attributing it to stress making it worse, but who knows!  But as for your symptoms, it could be either.  They say these things go through growth spurts, so maybe yours is in one.

Lyn

[Sobes]

Jim~

   Thank you so much! Is it ok to ask when you may be having another MRI? Do you still have 1 a year or is it more like 1 every 5 years now? So glad to know that you are doing well and thank you for the encouragement. It is really great to know what to potentially expect after surgery. Sure takes a lot of the guess work out of it as well as much of the worry! Have a wonderful weekend and I will continue to update and look forward to reading others' updates as well.  

[Sobes]

Hey Lyn,
         
        Thank you and same goes for you!! Hopefully we can stay in touch during our time before surgery! Please let me know how everything goes as soon as you are up to it! My prayers will be with you and I will be following right behind:) Did you get my PM? I am very glad surgery is set but wish there wasn't so much time to think about it...know what I mean? I will just work a lot...that will be a good distraction. How are you doing now that you have a date set? How are you doing with your studies? 

[CHD63]

Brenda .....

I missed your first posts while my husband was in the hospital.  Very belatedly, I want to add my welcome to this forum.  You have already found that this is a caring, supportive group of friends who can fully relate to what you are experiencing on your AN journey.

You already have had good answers to your questions.  Just wanted to add that sometimes symptoms are temporarily worse due to fluid retention in your tissues.  Unless you have other medical issues, you might want to monitor how much salt you are consuming and drink plenty of water.

Best wishes as you plan and prepare for your surgery.

Thoughts and prayers.  Clarice

[jaylogs]

Brenda, welcome to the group and congrats on the date! You sound like a mirror of myself, as I also have an 8mm on the left side and am getting a Middle Fossa done on Dec 9th. It'll be interesting to compare our recoveries and see how similar or different they will be.  I've been getting little dizzy spells ever since I had two major days of the room twirling.  And yes, now that I know I have this in my head, EVERYTHING is related to it!  And of course, I'm driving my wife and family a little crazy with it! (But not too bad, I hope! lol).  Take care and ask away, cuz this forum is awesome for the answers!
Jay

[Sobes]

Clarice~

    Thanks for the welcome and the wonderful advice. Now that you mention it...I have been consuming lots of salt lately! That's something I never would have thought of. Do you know why the fluid retention makes symptoms worse?   Sorry to hear your husband was in the hospital Is he doing ok now? This site is truly a gift and I feel like you are all my new found "family"  hopefully that doesn't sound too weird

    Hope your weekend is a great one!

Bren~

[Sobes]

Hi Jay,

   It's nice to meet you! Thank you for writing and yes...it will be very interesting to compare our recoveries, etc. Wow, your surgery is right around the corner...how are you feeling? I think I'm driving my hubby a bit crazy too lol!! It has been a challenge for me to not allow this to consume my every thought...how about you? So, I come here to drive all of you crazy instead of taking it all out on my hubby!       

   I find myself visiting here often (when not at work) so if you want to share please don't hesitate. Would really love to here about your symptoms, how you discovered your AN, etc. Unfortunately I haven't gotten the chance to read too many threads here so I want to do that and get to know everyone's stories! I have met some really special people here and look forward to getting to know many more:) Hope to talk soon and hope you and your family have a super weekend!

Bren~

[Jim Scott]

Bren ~

To answer your question:  I'm on an annual MRI basis (my neurosurgeon is very cautious).  I was supposed to have an MRI this year but insurance hassles have delayed it.  However, I'm doing well, have no symptoms and the 2008 MRI showed necrosis & some slight shrinkage so he hasn't pushed me to have the next MRI.  I'll likely end up having an MRI in December.  If not, I'll definitely have it in 2010 (I'm a bit cautious, too).  I'm hoping that I can move to a biennial (2 year) or even a quinquennial (5 year) basis because even though the MRI is not a problem for me, physically - I'm not claustrophobic and I have 'good veins' for the Gadolinium injection - my co-pay on the MRI is brutal.  I realize the 5 year scenario assumes I'll live a long life, which I have every intention of doing. 

Jim 

[Sobes]

 Jim~

Thank you for sharing with me:) Sorry to hear that you have had insurance issues. I have yet to receive the bills from my 7+ hour ER visit:( I really am afraid to open those as my insurance has recently been..."restructured".    MRI's are soooooo expensive so I am very sorry to hear that your co-pay is so high (I know some of them are a certain % of what the test costs). It is so good to hear you are symptom free but also glad to know that you are cautious and will be getting an MRI:). I look forward to sharing with you here during the next 20+ years!! 

Happy Friday 

Bren~

[CHD63]

Hi Bren .....

I feel the same way about this forum ..... my understanding family, as no one else can.  My husband was in the hospital for a heart arrhythmia, which is now under control but it was a scary time.  My AN friends here on the forum are fabulous pray-ers and it paid off!!     Thanks for asking.

Re:  fluid retention ..... a doctor treating my migraine-like headaches years ago (long before AN days) told me to watch salt intake because he said when your tissues collect water, your brain does also thus exerting additional pressure, causing headaches to be worse.  Not certain if that was his theory or based on fact but it seems to have been true for me.  I know my AN symptoms waxed and waned during the course of several months before my diagnosis was made.  I did not know I had an AN until it was over 2 cm in size.

Although you did not ask, I had an MRI at six months out, one year out, and will have another at two years out and go from there.

BTW, my husband grew up in Janesville, WI and we used to regularly attend a conference at Green Lake so we are Wisconsin lovers!  Actually my father and my maternal grandmother were both born in WI, as well.  See how we are all connected???

Best to you, as well.

Clarice