I'm so afraid

[Ingy M]

   I know that I am getting myself all worked up. I can't wait for this MRI on Sat.
As I read the posts and compare my symptoms to everyone else's, you realize how easy it is to self- diagnose. My story sounds the same as others, lacking some symptoms. As a result of these missing symptoms, I try to convince myself that it just can't be an AN.
Last week I  developed an eye twitch and I have sinus pain on the same side. The lower lid of my affected side twitches off and on, daily, all day. I dismiss this as perhaps from being tired. The left side of my head, behind the ear and neck is getting more painful, and have now started taking stron meds. I now also have "head noise" as opposed to ear noise. Is it getting worse or is this my imagination?
I'm so scared. I am a student nurse, almost finished my first year. Is this going to affect my new career? Will I be able to use a stethescope when I am deaf in one ear?
If it isn't an AN, what else could it be?
I apologize to everyone for sounding so paranoid and for wasting time when I havn't even been DX yet.
I guess I just need to talk to someone.

Thank you
ingy

[Dealy]

Ingy M. I think we all realize the anxiety that one can have over the possibility of having an AN. Just too let you know _i have twitching of my left eye on the left side-and my tumor is on the right side. I also get pain on the left side of my head. Do i Have a tumor on that side too. Well I have had 3 doctors tell me no. So all the worry and anxiety is not going too change one way or the other. I know it is easy to say-hard too do-but take it calm and relax a bit. When I had my first AN back in 1988 (I am an NF2) I freaked out because their was no one too talk too with a similiar experience. Now I am on round two because I am an Nf2. Tumor found on the right side. My first one was removed by surgery and I did fine for 18 years with just one ear. If I did not tell you-you would have never known. Please-Please calm down and wait for the results of your MRI. -they are benign and can be treated. Best Wishes-Ron

[Ingy M]

Thank you Ron for the kind words.
Saturday will come soon enough. The other problem is that I have to wait an entire month to get the results from my doctor. That was the eariest I could get an appt. I wonder if THAT will make me crazier?
If I ask for a cd of my MRI, I could see the AN myself right? This waiting is for the birds.

[1wareagle]

ingy m,

When I first found out that I had a AN it spread quickly through our little community. Soon a friend call me about a young lady they knew who also had previous surgery for a AN too. She contacted her and she came by to see me. She was 19 and had her surgery 3 yrs ago. She had ssd too. She was in a nurses uniform and I asked her what she was doing now. She was in her final year of nursing school. So to answer your worries, you can still be a nurse with ssd. Her face had some paralize too but she wasn't letting that stop her. Maybe you don't even have a AN but if you do you can still achieve your dreams of being a nurse.

Ellis

[ppearl214]

Hi ingy,

Ok, deep breath!!!!!!!!!!!!!  Let's see what the MRI says..... step by step... inch by inch... let's see what it says.  Ok?

Sending you huggles

Phyl

[Sefra22]

I have to wait an entire month to get the results from my doctor. That was the eariest I could get an appt. I wonder if THAT will make me crazier?
If I ask for a cd of my MRI, I could see the AN myself right? This waiting is for the birds.

Hi Ingy,
I was wondering if your doctor would be willing to call you when the MRI results are in. My Dr. called me the day after he got the results, even though I had an appointment to discuss the results just 2 days later. It gave me some time to research before my visiit so I was more informed when we discussed it.  I agree that the waiting is the worst, and hopefully there is nothing seriously wrong.
Lisa

[Ingy M]

Gee, I don't know if he would. I really doubt it. I would hope that if it was an AN he would not make me wait an entire month. However, the Ontario health care system is so backed up. The surgery waiting lists are very long.  It can take up to 6 months to see a specialist. It's crazy! I thought I would have to wait 6 months just to get my MRI. I'm not sure why I got in so fast.

I will keep everyone posted.  I am going to try and scam a CD of the MRI....maybe I'll be able to see or not see anything.

[ceeceek]

Hi Inge,
Maybe you will get lucky and it will just be a sinus infection.....there are so many scary things that it could be..but I have found through tons and tons of research, that most can be treated, and if caught early..which if you have anything, it sounds like it has been....they can be treated relatively easily....almost allllll brain tumors are benign, slow growing things, so even with the health care system in Canada, you will more than likely not be in a rush, which will allow you to check out all the info and treatments available....do you have state insurance or private, as you may be able to travel here for quicker treatment....
and I am sure if it is anything wrong, your doctor will see you pronto...some times, no news is good news....Sorry you are so stressing, I can understand, I just found out some not great news, but it is still treatable, etc...I know how the worry can set in....and try and remember that a lot of people who dont experience any problems, and there are lots of them, after thier treatment, no longer need the support group, so you dont get too much of a chance to see all the successful treatments and outcomes......
Wishing you all the best and praying for you, hang in there....perhaps as a result you can use your experience in working with people whom have been diagnosed with ANs or other types when you finish your nursing program... , then you could really understand what the patients are going through......
Hang in there
Ceeceek

[matti]

Ingy - I understand how anxious you are feeling and please don't apologize, we want to help you. I had my AN removed almost 9 years ago and recently developed odd sensations on the non-AN side of my face. I experience eye and lip twitching, facial numbness and tingling in my cheek, very similar symptoms pre-AN diagnosis. My MRI showed no regrowth and the non AN side was clear, there is however a sinus polyp on the affected side. Most people have them and rarely ever know it, as many do not cause any symptoms. Turns out my doctors feel that my symptoms may be more related to low estrogen levels, as that can cause nerve inflammation. I see a sinus specialist soon to see what his take on it is.

Please relax a little, if you do have an AN, remember they are benign and treatable, I am almost 9 years post op and life is wonderful even with SSD. You have options available such as the BAHA, Cros and TransEar hearing devices.

keep us posted!

hugs,
Cheryl

[Ingy M]

   Well, I had my MRI today and I will now have to wait a whole month for the results.
I think that bites. I asked the technician for a copy and he said he can't give one to me.  People go home and try and self dx...who me?
so, it will be another month of whinning, worrying and speculating.  My poor husband.
As soon as I know something I will post it.

ingy

[Mark]

Ingy,

I can tell you that when I have my MRI check ups I wait about 15 minutes get handed a copy of the films and then head over to the hospital to have my neurosurgeon appointment. So getting you MRI even the next day is certainly not a technical issue. I'm going to guess that you are enrolled in a HMO, but even with that there is no excuse for stringing a patient along for a month to get the results. I think you should ring the bell and rattle the cage with your primary doctor or patient advocate for the plan and insist on a faster follow up than that for your own piece of mind. MRI's are not a diagnostic tool typically used for minor issues and a doctor, medical center or health plan should display some common sense in terms of reporting the results in a timely manner.

My 2 cents

Mark

[Ingy M]

Hey Mark,,,Want my doctor's phone number?
Here in Ontario, Canada we are going through a difficult health care crisis.  We do not pay for any diagnostic testing, surgeries or hospital care. However, this free healthcare has caused huge waiting lists in the system. I agree completely with your comments but I don't think I have much of a choice. This morning when I went in for my MRI, even the nurse remarked about how long I have to wait to see the doc. It is a fractured system that is even causing our doctor's to go elsewhere in the world to practice.  We have an serious doctor and nurse shortage here as well.
I will call the doc on Monday to put in for a cancellation..  By the way, what's HMO?
Also..my ear is killing me ever since that MRI. Can the test cause pain or is it a coincidence(sp)? imagination perhaps?
ingy

[Mark]

Hi Ingy,

Bad assumption on my part, I didn't realize you were a Canadian. Unfortunately that explains the situation you're in with the delays. US healthcare typically is broken down into two general classifications. HMO's ( Health Maintenance Organizations) provide a lower cost option but greatly restrict access to doctors and sometimes treatment options. PPO's are more costly but allow access to a wider range of doctors and treatment options.

While there are many things that can be fixed in the US Healthcare model, there are those here who promote the Canadian model ( and some others) as an option to solve universal access. Some might remember a current democratic presidential candidate flying that silly flag a few years back. Your situation, unfortunately, highlights one of the major flaws in the Canadian model that I think most folks in the US would have a hard time adapting to if our system went that direction.

At any rate, I wish you good luck as I still think the people who run your system should figure out to give someone results faster than one month.

Mark

[Obita]

Ingy:

I am so sorry you must wait so long for your results.  Maybe you could talk someone into giving you the cd now.  I can understand why the tech couldn't give it to you.  Can you ask for one and say you are sending it to the US for a second opinion?

Hang in there, Kathy

[ppearl214]

Ingy,

My spouse, based in the UK, goes through the same thing when it comes to his healthcare.  I know the wait is difficult and hoping you are keeping yourself busy to help preoccupy your time.  I do know that friends of mine in the UK keep calling the physiciain's office so maybe... if you are persistant... you can get your answer sooner than later.  As everyone here can tell you, I can be a pain and I have faith in you to keep reminding them that you need this attention for your MRI results.

Hang in there.
Phyl