Freaking OUT, crying HELP

[Larry]

Karen,

Told ya! the people on this forum are great - they got me through and still get me through tough times.

When you seek other opinions, make sure you are armed with all the questions. Make sure you see (if you do have an AN) specialists that do radiation treatment and also surgery - you need both opinions and there may only be one or two around that have a balanced view so you need to be aware that a number of surgeons will dismiss radiation treatment as an option.

Now for some practicalities, read the welcome message there are instructions posted there on housekeeping stuff, including posting pictures. Most importantly, you may want to join in on the Good Morning thread under General. It is a little long but its a greaty way of joining in for a laugh. Persoanlly, i have found it a lot of fun.

Re your insurance, I am in Oz so not 100% up to play with your system but I do remember someone posting where they wanted to be treated outside of their insurance dictated area and they managed to get the insurance company to agree. You can do some key word searches on that.

Keep smiling Karen - well, we'll make ya anyway.

laz

[kjmema]

The word BRAIN TUMOR is not good.  I like lump behind the ear better...I got my Christmas tree up and we are in the middle of an ice storm so things are looking up...I like cold weather.  Thank you ALL so much.  It seems every post has something that is worthwhile.  I copy parts and put them in a word document for further study.  What a fantastic group of people.  I've been on forums before and found most to be less then helpfull.  This group has a lot of good information.  I hope in the future to be able to add words of encouragement to others.  Right now I'm ignoring a slight ear ache.  Has to be my imagination!!!!  Karen

[Joef]

I told people at work it was a tumor behind the ear, ... never said the words "Brain tumor" ...

wife said with a smile .. "I told you -  you needed your head examained "

cold and snowy weather is great until Feb .. then I'm sick of it !!! and start dreaming of fishing and open water.

[kjmema]

My husband said I was a half wit...LOL 

[Sheryl]

I tell everyone that after 39-1/2 years of marriage  that we do everything together - even develop brain tumors at the same time!! When we went for our yearly MRI's (together) recently, the woman called out our last name and we yelled, "which one" - everyone in the waiting room laughed.  She said, "both" and we went in together, got IV's together, but at least they had two MRI machines so we went separately there.
Sheryl

[rebarman]

I'm always looking at tools for the work shop. My wife's answer was always "you need that like you need another hole in your head."

Don't think she'll be using that come back anymore.

 

[kjmema]

Oh my gosh a HOLE in the HEAD.  That is just too funny.   Just have to keep these spouces in line... I figure since I'm relativelly symptom free for the time being I'll start milking it a bit.  "Honey can you do the dusting,  bring me some coffee,  the doc says I can't cook anymore so lets eat out."   Maybe I'm on to something here!!!!!

[Joef]

I have a BAHA hearing aid ... which "buttons" on to a post that screwed into your head.. it is problem free but , it can become lose... and is a simple procedure to tighten in your ENT office ... just call and set up an appointment for , "I have a screw is lose!" .. not only do I have a hole in my head.... I have a screw lose too  ..

[Gennysmom]

Karen, I'm a little late jumping in here, but I'm glad you seem to be doing better.  I hope they can give you a diagnosis on the facial issues soon!!!  My favorite funny was, with a copy of the MRI, proof positive that I DO have a brain.  Being blonde, I milked that for all it was worth!  The first stage of this journey is really scary, then you read everything you can get your hands on, and realize that no matter what, you can handle whatever it is.  You'll have good days and bad, but you can handle it.  Just don't be too tough on yourself...I took this as a sign that someone wanted me to slow down and smell the flowers....I think I needed that AND a hole in my head!!!!!!!!  OK, maybe not the hole in the head.....

[kristin]

hi karen,

sorry i missed this topic when it was brand new.

i just wanted to tell you how i was told i had a brain tumor...

i worked for the doctor who dx'd me... i went to see her because i fell over like i was in an earthquake..(the world moved). anyway, she thought i could have had MS so she sent me to have an MRI. what a shock it was when she called me about 20 minutes after my MRI to say "good news!! it's not MS. but you do have a brain tumor and will have to have brain surgery"

good news? she said..."this is FIXABLE...MS is not"

and here i am, 1.5 years post surgery and the only problem i have is a freaky eye that doesn't shut when i smile and sometimes (well, all the time) i bump into walls..

she also said..this is the best type of tumor to have (if you have to have any at all).

anyway, best of luck to you. i would recommend contacting House Ear Clinic for a free consult. with a 3 mm tumor, you have time to research.

kristin

[Captain Deb]

Hey Karen,
I have been to Springfield MO many times--my husband, the infamous Dr Love is from there and so is Pretty Boy Pitt! Definitely get a consult from someone in a major center of excellence--Springfield is indeed a small town. I got my diagnosis just after my wonderful mother-in-law, June Purves, passed away there, the day before Thanksgiving 4 years ago. You have plenty of time to decide what you need to do. You have certainly come to the right place!

Capt Deb

[kjmema]

Hey Deb, Glad to find someone who has been to Spfld.  My daughter went to High School with the one and only Brad.  Said he was a jerk.  Very nice family.  His brother and sis are normal...LOL  So except for House exactly where does one get these second and third opinions.  I'll send my MRI anywhere if I have an address or contact no.   I know about the free consult at House and will do that next week but would like to send it at least one more place....I don't mind paying for the service.  I just need a name and no....

[Palace]

kjmema,


I sent you a personal message and I hope you retrieved it.



Palace

[kjmema]

Got your message Palace...Will give you a jingle next week.  Heading out of town tomorrow to visit kids....Thanks...KJ

[Jim Scott]

Karen:

Welcome to our 'exclusive' group. 

You certainly do seem to have rather severe symptoms for such a tiny growth, but Acoustic Neuroma tumors can be like that.  Depending on their 'placement' they can generate all kinds of nerve-related problems.  Perhaps your AN is not the actual cause of your current symptoms, but I can't address that with any authority as I'm not a physician.

I have to mention that my neurosurgeon, Dr. 'Ike' Goodrich, could probably practice almost anywhere he wanted to.  He's a Yale medical school grad and very highly respected in this area.  However, he practices out of a relatively small Catholic hospital in a medium-sized Connecticut city: New Haven.  He is tops in his field and did a fantastic job treating my large AN.  The first neurosurgeon I saw (post-diagnosis via MRI) was almost afraid to touch it, due to the large size.That was a very short consultation.  Dr. Goodrich, a mature man, was confident - and his well-earned confidence instilled confidence in me. Please don't make the mistake of equating 'big city' with 'the best'.  Sometimes, the 'big city' doctors simply charge more but don't really have any special expertise or skills, just fancier waiting rooms and affiliations with big-name hospitals.  I realize that's a generalization but my personal experience (as stated above) compelled me to respond to your casual dismissal of 'small city' doctors. 

That small issue having now been addressed,  I do hope you feel better will continue to make use of this website, which has much information as well as great forums with knowledgable folks who are anxious to help in any way they can.  That includes me.  

I wish you well.   

Jim