Alot to worry about

[alwaysthere]

I am waiting to see the Dr's at Mayo the first of May and it is driving me insane. Since I have already been diagnosed I am going there to discuss surgery, as I want this thing out of me and the sooner the better.

But, in the meantime the wait is agony. I am now having numbness on the AN side of my face and shooting pains into my head and ear. I went to my family Dr. yesterday just to make sure I didn't have a ear infection. He said after looking in my ear that I had fluid, but he wasn't sure if this was from possible sinus or to do with the tumor. Has anyone else had a problem with fluid? My balance has also been really bad the last week or so. This along with veritgo almost every day. Makes me wonder if the AN is growing.

My nerves are about done for. I still cry at the drop a hat and get teary eyed talking to people if they ask how things are going. I see our lawyer on Monday to have my will updated. I don't know why I feel so strongly about that, but I do. I hope this is all normal feelings and I'm not going off the deep end.

I too worry about the facial nerve and will there be damage. I'm really not that vain about my looks, but can't help being concered anyway. I would love to go to a support group meeting, but since I live in the middle of Missouri, the closest one is about 3 1/2 hrs away. So, all I have is this forum and reading what all of you are going thru or have been thru. That in itself is a big help.

Thanks so much to everyone on this forum, because without it I don't know where I would go for info and help. God Bless you all.

Patty

[EJTampa]

Hi Patty,
 
I understand your concerns completely!  I had my surgery 6 weeks ago, and the worst part was waiting for surgery day!  Well, maybe trying to decide what treatment option to choose, but both together were way worse than the actual event.
 
The symptoms you describe sound like AN symptoms.  There is a good chance that most of those will abate after surgery.  I never had a problem with fluid, so I can't speak much on that front.
 
It is perfectly normal to feel the way you do now.  It's never a bad idea to keep your will updated, but I can just about promise you that you'll get to update it again at some point after surgery.  Yeah, not much chance of death with this surgery, no more so than with any other major surgery.
 
I'm sorry about not having a local support group to help you along, but what about a church group?  I know my church has countless support groups for everything under the sun.  While I'm sure they won't have an AN group, they may well have a general "illness/wellness" group you could join.  I bet your journey so far could help others in that group, who perhaps are facing similar issues.
 
Not much more to add here, but I will keep you in my prayers!
 
Ernie

[suboo73]

Patty,  Hi - hope you are feeling a little better after maybe getting some rest this morning.

I have felt the stress of waiting for this appointment and that appointment, researching my options and going for 2nd opinions, etc.
Anyway, i hope you can get to MAYO clinic soon - have you considered calling to see if they will contact you if an appointment slot opens up?  I actually had a neurosurgeon's office call me back and offer an earlier appointment time (i was shocked!) Sometimes you have to call for an update on a particular day, like Monday morning or Friday.  Maybe this will work....

Honestly, i wish i could cry some days - i get real emotional and frustrated, but can't cry very easily. 
I agree with Ernie - no wonder you feel the way you do - you have alot going on, and it is perfectly normal.

Lately, i have been trying to do more things for me to 'relax.'  I know this is going to be harder for you, since you are already not feeling well.  Just try to take one day at a time, maybe rest more when you can, and soon the waiting will be over.  I also know that every time i have an appointment, etc., i want to get 'everything in order' prior to that, like clean the house, get laundry done, etc., etc.  Maybe you can do a few tasks each day, to help the time go by.  I never 'plan' these things, but maybe putting a few tasks each day on the calendar will distract you and get you to the Mayo date!  [Even if you don't get every task done, that's ok.]

BTW - kudos to YOU for updating your will!  I know i am LONG OVERDUE to do this and have been avoiding it.  My sister, on the other hand, has had 3 hip replacement surgeries (not by choice) and was required to do this each time for military insurance.  This is an important task to take care of and i believe there are a lot people out there who have not (including me!)  So - i will put that on my 'to do list' - thank YOU for the inspiration!

Keep posting - we are all here for you.
I want to go to a support meeting too, and they are about 2 hours away - found out i have to WORK on the next one, geez!

My thoughts and prayers to you and your family.
Sincerely,
Sue

[msmaggie]

Hi Patty,

What you are feeling is right on target for your diagnosis!  We seem to be programmed to want things fixed now, especially when we get a diagnosis as distressing as an AN.  Of course you are stressed out, and what makes it worse is that now you find yourself at the mercy of someone else's schedule--the drs.  You got some good advice from Suboo about seeing if you could get an earlier appt.   People cancel appts. all the time, so maybe you could get lucky in that regard.  In the meantime, see if a good friend, church group, or family member could serve as a sounding board for your fears and frustrations.  You definitely do need someone to talk to.  And of course, you have this wonderful forum at your beck and call 24/7!!
Hang in there.  The waiting truly is the hardest part.

Priscilla

[Kaybo]

Patty~
You have received some great reassurances here!  I just want to let you know that if you would like to talk on the phone, I would be more than willing to call you.  I have unlimited long distance so it certainly is not a problem.  Just PM me your number if you are interested!  There is no support group where I live not did I have a "Forum Family" for the first 12 years after I have AN surgery so I know how it can be very isolating!  I would LOVE to chat with you!!

K

[leapyrtwins]

Patty -

if it's any consolation, what you're going through is normal.  Anxiety is a big part of the AN journey.  Sometimes it's the "what ifs" in life that get ya 

Hopefully talking to the doctor's @ Mayo you help ease your fears.  I know in my case it just took two very confident, comforting doctors to help calm my nerves; I wish the same for you. 

The others had very good advice - I especially like the ideas of trying to schedule an earlier appointment and about keeping busy.  And a call to Kay will definitely cheer you up.  Another forumite always says Steve has a sunny disposition - and I can't really attest to that (no offense, Steve) - but I think Kay has the best attitude I've come across in years.

I'm not around much during "regular hours" - working, parenting, and now my mom is having back surgery next week - so it's hard to reach me by phone.  But I read and answer email at all hours of the night and early morning.  Please feel free to contact me.

We are all here for you.  Don't hesitate to lean on us; we'll get you through this.

Be strong and keep the faith 

Best,

Jan

[Lilan]

Do you have allergies or non-allergic rhinitis? Because this time of year, certainly in Mo., some AN symptoms (headache, fullness, dizziness) could be aggravated by seasonal allergies or barometric pressure changes that affect your sinuses, esp. if their is fluid in your ears.

Stress doesn't help either: Notice you said "My nerves are about shot." There is no question in my mind that "nerves" in the emotional sense exacerbate symptoms. Then we worry more that things are getting worse! It's a vicious circle but a normal part of the process. Just try to accept that symptoms can fluctuate, don't overreact emotionally to each one if you can help it, and there will not be a life-altering change in what's going on in just the next few weeks!

[amymeri]

Boy your post brings back (unpleasant) memories.  I really remember that fear and anxiety before surgery.  I can remember how every symptom seemed magnified and frightening.  Remember these things grow very slowly.  Your tumor finally got big enough to cause some sx and so, of course, you notice them.  But that doesn't mean things are getting worse day by day.  Anxiety can cause some of the symptoms you describe, too.

Everyone on this board came through okay and you will, too.  There may be challenges (I have faced some) but life you will come out alive and recover at your own rate.

You have a lot of support here!

[cjtender]

Hi Patty...I am fairly new to all of this (just diagnosed on March 6th) but know that there are alot of supportive people here...I too had issues with meltdowns in the beginning...I hope you find the answers you are looking for

[Jim Scott]

Patty ~

I can only reiterate what others who got here before me have stated. Your feelings are normal and so are your fears.  Facial complications were very much a concern for me, prior to my surgery.  I would have to assume this is one of the most common issues pre-surgery AN patients worry about - with good reason.  Frankly, at some point, you have to gain control of your emotions or they'll  just make everything more difficult.  Your determination to have surgery will probably help you gain some emotional control, especially once you have a surgery date. Trusting your doctor(s) will be paramount.  If you're confident about your choice of treatment, your doctor's knowledge and, especially, his skill, you should be able to set your sights on your ultimate recovery and lose some of the angst.  With your symptoms acting up, this isn't easy, I know.  I guess it's an act of will.  I expect that you realize you have a better chance of winning Powerball than dying during AN surgery, but having your will up to date is always  a good idea, even if it won't be read for many years.  Oh, and crying is allowed for AN patients. 

FWIW, I'm pleased to learn that you appreciate the forums.  We expect to be seeing lots of messages from you in the future, especially once you're an official 'postie'. 

Jim

 

[alwaysthere]

Thanks to all of you for the encouraging words. I think that when you live in a small town and no one has ever heard of something like this it makes it harder. Cancer they have heard of but not Acoustic Neuroma's. I do belong to a great church and am in fact a Deacon and the chairperson of our Health & Wellness Committee. We put health tips in our weekly newsletter and am thinking of putting an article about AN. Not to get sympathy but to educate people on this type of tumor.
After I was told I had Fibromyalgia and other autoimmune prolbems about 5 years ago I started a Arthritis Support Group that is still going strong. So maybe this is my way of getting the word out about AN. I really believe that things happen for a reason.

Some days are just worse than others and yesterday was one of them there days. I did call Mayo to see about getting in sooner and couldn't. But, they did tell me to keep calling back to see.
I think that when a person deicides what they want it's hard to wait, but we have to.  Anyway, thanks again for letting me vent. By the way I look forward to being a "postie"

Patty

[Seal]

Patty,

You  already have great advice here, and I don't need to reiterate what was said.   Before I sign off, I just want you to know that I had a complete and successful tumor removal on Monday.   The average stay is 5 days, but they said I was doing well.   So I came home today to a loving wife and three cute kids.   I know I and lucky, but I just want you to know that you will get through this just as I did this week.   My facial numbness is already subsiding.  My balance is not great, but I don't have bad vertigo and minimal pain.     Yes, SSD may be an hump to get over, but there are options.   Just keep focused as Jim says.    May is right around the corner, and these are VERY slow growing tumors.     Wishing you the  best.

Steve

[leapyrtwins]

Patty -

I like your idea about putting an article in your church bulletin to educate people about ANs.  As you say, most people haven't heard of them - even most of us, prior to diagnosis - and I personally like to educate people about ANs - and BAHAs.  You never know when the information might be helpful to someone - there are a lot of potential future AN patients out there.

It might also help those you know understand a few changes you might have post op.  One of the tough things about some of the surgical side-effects - like the wonkyhead, the drunken walk, and the SSD - is that they are "invisible" to others.  Most times even your surgical scar won't be something that's noticeable to others.  While this can be very good, it can also be very bad - and not from a "pity perspective".  It can be hard for others to realize you aren't "yourself" anymore because on the surface they can't really see anything wrong with you.  Frustration and/or depression can end up being very common emotions. 

I think the more others understand what you are going through, the more they'll be able to support you.

I should probably clarify my comment about not being "yourself" anymore.  Life post AN is good - no doubt about it - but it often brings what we like to refer to as a "new normal".  For example, my new normal includes being SSD and sporting a spiffy BAHA  - and I'm perfectly okay with that.  A little different than I used to be, but perfectly okay 

Jan

[alicia]

I am shocked at how many people are diagnosed with these tumors!  Everytime I get on, I see new people!  How do you guys keep everyone straight?  You are all so good at making us feel like we will make it and we will be ok not matter what happens.  I am happy to know with all the bad things going on in the world - there are so many good hearted, supportive people out there.  Thank goodness for our computers! 

Take care Patty.  We will persevere.  Alicia

[leapyrtwins]

You are all so good at making us feel like we will make it and we will be ok no matter what happens. 

That's because you will be.  Try to focus on that.

To quote a very wise and kind man - my neurotologist - you'll be fine.

It's very interesting to me that although he said that to me almost two years ago - and it's not exactly a prophetic or stellar comment - I remember it to this day.

Faith and support are wonderful things that will help you through your AN journey.  A positive attitude is another.

Keep your chin up 

Jan