I'm so afraid

[Ingy M]

Update...Sunday, the day after my MRI, I recieved a phone message from my doctor's secretary to call the office on Sunday or Monday. By the time I get the message and call, the office is closed. All night I am wondering why my doc would call on a Sunday at 4:45pm....Something is wrong. Today, Monday, I call the office and the office is closed for a week due to vacation..
Can you believe this? Why bother calling at all?  I don't get it. How am I going to get through this week now. Something has to be wrong..I can't stand this. I am calling my GP to see that he give's me the results sooner.  He gets a copy of the MRI results. Screw this, I just don't think that's fair to call a worried patient and then take off for a week.
I could just spit!
ingy

[Obita]

Hi Ingy:

I would be livid so I am not going to tell you to settle down.  Here in the US, if an office is closed there is always a message service to take calls for the on call doctor to call you back.  CRAP.

For your health though, try and settle down.  We don't want you to loose it.  We like you.

Good luck and I sure hope you can get through to your GP soon.  Kathy

[ceeceek]

Hey Inge,
I believe if you provide the name and number etc of a particular Dr in the United States as a request, the faciilty would have to send them...I would suggest that you log onto cyberknifesupport.org and ask Dr. Spunberg or Dr. Medbery if they would request a copy of your MRI for thier viewing, at the very least, they could perhaps read your films..and I also believe that either of those Drs would be willing to look at them for free or super low cost......you just need to have the MRI facility, address etc so that they may mail or fax an official request...you will also need to fill out, if you have not done so already, a release of information form....that way the MRI center can release copies to those whom request them.....
I know there are big problems in the Canadian system, but you are I believe allowed to travel etc for alternative treatments elsewhere....
Log on, ask,,worst they can do is say no, and I highly doubt either of them would do that....
Ceeceek

[ceeceek]

took the libery to ask while I was logged on anyway.,,,hope you do not mind..I did not say whom you were or what group you belonged to etc.....
Hopefully I will have answer by Tomm...if they can and or will do such a thing..so far they have been nothing but terrific..and it is a great way to learn about different options and different information of the various types of radiation treatment....
Ceecee

[Marilyn]

Oh Ingy,

I'm sorry to hear about your fear.  Fear is so awful.  I've been real trembly myself about this stuff.

I learned an exercise in a spritual school that really seems to help me, when I can remember to do it.

I watch my hands.

I know that doesn't sound like much.  But I concentrate on my hands and watch them do whatever they're doing.  What a miracle it is to be alive and manipulating stuff.

Another thing I do is to try to remember that, right now, in this very moment, I'm ok.  This moment is ok.  Breathe, this moment is ok.

And another exercise I learned in spiritual school is one called "spot the spot".  Find an object to focus on.  Focus on it completely.  When your concentration wears out, find another spot and focus there, etc, for  a while.

I'm glad you are accepting your fear, rather than repressing it. 

Tears help.

I hope your MRI turns out to be much better than your best hope.

Marilyn

[Ingy M]

Thanks everyone, I am ok..I just get a little frustrated. I called my family doc and the nurse said, that when the results of the MRI fly past her desk, she will call me. 
It will be very intersting to see what the results will be.

Thanks for the support..

ingy

[ceeceek]

Ingy,
Dr. Medbery at the cyberknifesupport.org website, stated he would be happy to request a copy of your films and read them for free so you will not have to wait.

Just contact them via the website, post under "brain" topics and state your problem....they are wonderfull Docs and I cannot imagine life without them at this point.
Ceeceek

[Ingy M]

Oh geez, really? That'a amazing!
One problem, My doc is on vacation for a week and My MRI was at a hospital 2 hours away. There is nobody available to release the MRI pics.  They wouldn't give me a copy in fear of self DX. 
Thank you very much for doing that.  I will make sure I use it if I need a second opinion, which I think will be in the near future, regardless of the results.

Thanks again, You guys are a bunch nice people.

ingy

[ceeceek]

No Ingy, I dont think you understand...if you give Dr. Medbery the name of where you got your MRI,,the center or hospital will have to send him a copy ASAP.....it doesnt matter who ordered it,,,that way you will not have to wait a month for at least confirmation of either an AN, and ear infection etc.

Check the site, and check with Dr. M, but I do not believe you need to do anything other than possibly fax Dr. M a release..you will need to ask him....otherwise, I believe you can have an answer at least to some basic questions...as far as diagnosis etc, then feel free to second opinion, but virtually every Doctor can tell whether it is an AN or something else with a quick review..if it does turn out to be an AN, you have plenty of time, they are slow growing as are most other types of growths...but it should at least relieve some of your anxiety in the meantime, and if I have overstepped my bounds, my apologies, I just cant imagine having to wait over a month for the results, I would be completely insane by then...

Ceecee

[ceeceek]

Sorry, I just read whole post....auughhh, I know the feeling my doctor, bless his heart, called me with bad news on a friday, so there was nothing I could do over the whole weekend...longest days of my life..anyway, Dr. M said he would be happy to help either way....I told him I would direct you his way, so if you do wonderful, if you dont, no biggie.....good luck and hang in there..an know others unfortunately have had to live..that being the key word.....through the same thing...
Ceecee

[Ingy M]

Wow, I see.  I went to the site you mentioned.  I just find all this kind of strange.  Maybe it's just because I am a canuck,  but I find it strange that I can have a doctor, I don't even know, look at my MRI and release it over the internet.  At the same time, I am amazed that it's that easy for you to get your answers.  
Ceecee, thank you very much for what you have done, really. I just have to do some research on this. I don't know if it is the right thing to do.

ingy

[ceeceek]

Please dont feel intimitaded..the information available can be overwhelming and so can I...in a good way I hope...I tend to be a hound dog that way, and have educated myself to death on this subject..afterall, I only have one brain and wish it to be left intact as possible.....either way, with that being said, the site is an incredible resource, just like this one so I would suggest that you use it for your own peice of mind..the Doctors volunteer thier time and answer as much info as they can.....
In regards to having the docs look at your films for free, it is common at least when it comes to brain tumors...so far I have had over 10 doctors from around the country all look at my films and offer at least some basic advice for free. The only one I had whom wanted to charge me was the skull base institute in CA...so I declined.

EIther way,,,,hang in there and good luck, keep us posted and we are here whenever you are having an anxious moment..I know how much this site and all the people and support have helped me and cannot imagine what I would have done without it..
Ceecee

[goinbatty]

I can only imagine how you feel.  As for myself, I was given the CD (not the report), on the day of the MRI.  Naturally, I brought it home and promptly popped it into the computer.  I saw the tumor but tried to not to freak out until the doc appt the following week.  I'm a nurse too.  As crazy as it may sound, I sort of put myself out of the picture and spent my time studying the MRI pics themselves which in general I found fascinating.  Also researched as much as I could on AN (even though I wasn't sure that was what it was at the time).  I went through a similar scare over 20 years ago with adult onset seizures.  At that time, I just knew I must have a brain tumor.  As it turned out, they couldn't find a cause (CT scan was negative; EEG no definite link).  Unfortunately, this time I wasn't as lucky.  Forgot to mention, this happened within 2 months after I graduated from college.  All I can say is try not to panic.  I hope you find out your results soon.  Keep up updated. 

[Ingy M]

Hi goinbatty,Do you have problems hearing blood pressures with your  stethescope? Do you have an ampliphied one? Has  your AN affected your practice?
I find out my results in about 1 1/2 hours and am scared stiff.  I had a very bad weekend with dizziness and ear pain. Again today.
The flutter is very hard to describe and only really get it when I am walking.
I will post my results as soon as I get home.

ingy

[Cheryl R]

Hi Ingy.      I am not goinbatty but I am a nurse and work only part time in a small rural hospital.   I have no trouble with using a stephoscope.     I have found sounds vary among stephoscopes and I have my own I use.  It is not even one of those expensive cardiology ones but a cheaper one and I do fine. Occ if I can't hear a BP I ask the pt if anyone else has had trouble hearing it and they answer,oh yeah no one can hear it in that arm.                    I have seen in some of the larger hospitals that techs or aides take vitals using a machine.            I have some hearing loss also in my good ear and my biggest problem is in a noisy nurses station or if a visitor talks from across the room esp when my back is turned.                    I also have trouble locating where an IV pump is beeping when I am standing in the hall.        I do have some balance problems so have to watch around pts tubings.       The hallways are carpeted where I work so makes it seems less open and that helps me too.    Large open areas are the worse for me looking like I am walking drunk.
Hang in there.       The world needs nurses and good luck to you.             I have had AN surgery twice and was back to work in 2 mos both times.     Being part time helps and occ I am the fill in person so only do a 4 hr shift  instead of the usual 8.            I do do 12 hrs every 3rd weekend which is not my favorite thing but I blame my age there as am almost 55.   
                                                Cheryl R