New member - a little scared

[Jim Scott]

Hi, Mallory:

It appears as if I'm the caboose on a long train of welcoming messages filled with good advice and suggestions. That's O.K.  Its what we do here...use our personal experiences to help others with the same relatively rare condition.  I can't add much to all the good advice, suggestions and links you've already received.  However, I noted your concern regarding unwanted but well-intentioned visitors.  Having had some experience in this matter and feeling much the same as you do (cherishing privacy), about the only possibly helpful suggestion I can make at this late date is that if you're married, appoint your spouse to be your 'gate-keeper'.  When I was in the hospital and immediately following, as I recuperated at home, my wife fielded all telephone calls and made it very clear that I "wasn't up to visitors".  No one was offended and I saw people on my own schedule, by inviting them to my home or going to a  place where we would meet (church, usually).  If you're not married, a parent, sibling or even a good friend can be your gate-keeper.  This may or may not be practical for you but I wanted to make the suggestion as well as add my voice to the melodic chorus of welcomes and best wishes as you begin your journey back to wellness, which I'm sure you'll handle just fine, with a little help from your friends.  .  I look forward to your posts.

Jim

[Syl]

Mallory,

Welcome! Isn't this forum wonderful?

You mentioned that you live alone--please have someone help you after your treatment. Whether someone stays with you or whether you go and stay with them, treatment for an Acoustic Neuroma is not something to go at alone. I was sent home from the hospital with a walker and have upgraded to a cane. At  5 wks post-op, I'm still not driving. So, you can guess, I still need help. It sounds like you have people who are willing to help. Take advantage of that and appoint them certain duties.

The week before my surgery, I gave my co-workers my sister's phone number. If they had concerns or questions about my condition, she was the one they could reach. This way they would know not only how the surgery went, but when I was released from the hospital and, very important, when I'd be ready for company.

I also gave many people the URL for this discussion forum. I told them where they could find updates on my condition. It turns out that many of my friends at work relied on this discussion forum to check on me.

Please keep us updated.

Syl

[Debbi]

Hi Mallory -

And a belated welcome to you from NJ! 

I'd like to echo what Syl said, you will definitely need someone to help you out, at least for the first few weeks.  No matter how smoothly your surgery goes (and hopefully it will be text-book) you will still tire very easily, may have balance problems, and may be on various meds that impede your abilites.  Really, if at all possible, don't try to go this alone.

Meanwhile, welcome again - you've found a wonderful supportive group of people here who can all relate, first hand, with what you are feeling and experiencing.  You're among friends.

Debbi

[Sammict]

Hi Mallory

Welcome. Everyone here is great support they are like a family. I am glad you found it.

Like you I am waiting on surgery. Coming to this forum helps with the anxiety of it all. It's all overwhelming at first know thatyou are not alone.


Sam

[cherrypiper]

 :)Hey Mallory .........1. AN is fairly common, most the times benign......2. There is an excellent set of questions from the ANA on what one goes thru. These pamphlets really helped me b4 and after surgery. My surgery date was 12/3 07 so im coming up on 8 months pretty soon.

The list of side affects are real long........but thats the lawyers. Facial nerve damage is one of the larger inconveniences. Especially for young ladies. Us old guys not as much.

this also isnt something that poof everything returns to normal either. i still cant shut my rt eye all the way, though almost and eating and shaving with no feeling or use over there on the right side has been a pain, but only when i let it get to me.

the BIG deals are they can remove the tumor many ways and its usually benign......... mine was fairly common sized.......5 1/2 hours of surgery and dont worry about the people the first couple days i had no idea who was there anyway.. i was in the hospital for 4 days total..........

a support group has helped a lot ..........and this is an excellent one............ask any questions that might pop up................

welcome

[4cm in Pacific Northwest]

Mallory,

Cherrypiper makes an excellent point about support groups.


Here is a list of the support groups in Canada - within your province specifically.
http://www.anac.ca/chapters.html)

This is the contact  list in Ontario
DHM's edit note (July 25 08) I am deleteing my cut and paste as I am worried about copyright and getting the ANA in doo-de-doo... sooh here is the direct link to the PDF
http://www.anac.ca/endocs/ChapterMeetings.pdf

They have a discussion forum too
http://www.anac.ca/phpbb/index.php

(Although I recognize many of the folks are also chatting on our forum too. Don’t worry when it comes to Acoustic Neuroma tumors and a helping community – there are no political borders. We all help each other out here)

I went to my 1st support group meeting after my surgery (Portland, Oregon) in hindsight I really should have gone BEFORE my surgery. Many people have much experience, wisdom and understanding to impart. ON my vacation to Canada I might just show up to one of the meeting. Let’s just call it “acoustic neuroma tourismâ€?  ;)…

Remember you do not have to go through this solo.

Keep moving forward.

DHM

[mallory]

Thanks for all your kind replies.

I had a meeting with the surgeon the other day and found out that it's not an AN like they originally thought, and it's actually a jugular foramen schwannoma. I'm not sure if that disqualifies me from being here! But I thought I'd put it out there to see if anyone has information or could point me somewhere, since I'm having a harder time finding information on this one.

He said that it's 3.5x2.5cm so radiation isn't really an option at this point.

[lori67]

Wow - you like to be unique, huh?  I've never heard of that one myself, so I don't think I can offer and words of wisdom on it.  There's got to be something on the internet about it - it just may take some digging around to find it.

And you'll always be welcome here!  There are a few other "unique" folks out there along with us boring, old AN-er's! 

[Debbi]

Mallory-

Ditto what Lori said - you're always welcome here! 

Debbi, another boring "old" an-er

[Jim Scott]

From Winipedia:  The jugular foramen, a large aperture in the base of the skull. It is located behind the carotid canal and is formed in front by the petrous portion of the temporal, and behind by the occipital; it is generally larger on the right than on the left side. 

http://en.wikipedia.org/wiki/Image:Foramenjugulare.PNG

Basically it's another type of neuroma in the cranial region, so you're still welcome, Mallory. 

Jim

[satman]

There is no way i would have made it without help especially driving to dr's and therapy,etc,basically anything for at least 6 months.
you probably dont want to hear it but truth of the matter is, depending on the outcome you might want to start working on being dependent on family and friends,because it can be a rough road.
i hope you dont have to go through it and i will pray that everything works out positive on your recovery.
please dont shoot the messenger. i dont mean to sound negative ,just the harsh truth,which you need to know going in.