ANA Discussion Forum
General Category => Inquiries => Topic started by: Ingy M on February 27, 2007, 09:46:59 am
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:'( 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
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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
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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.
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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
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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
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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
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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.
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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... :D, then you could really understand what the patients are going through......
Hang in there
Ceeceek
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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
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>:( 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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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 :)
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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
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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
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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
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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
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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.
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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
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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
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I have been away from hands on nursing for quite awhile now but from what I can tell, my hearing isn't affected except for the tinnitus. As long as you have a good stethoscope and your hearing isn't affected on the one side, I would think you should be able to hear. I work in nurse case management now and spend quite a bit of time on the phone. I usually use my unaffected side because even though my hearing supposedly isn't affected that much, it tends to make the symptoms/tinnitus/fluttering worse. I feel that fluttering sensation at any given time and I can't link it to anything in particular.
Let us all know when you find out your results. Good luck.