ANA Discussion Forum
General Category => AN Issues => Topic started by: tenai98 on August 19, 2008, 03:19:48 pm
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My ENT office just called. My MRI must have shown something as he wants to see me next wed...I dont know if I can survive the wait time...I have tons of patience usually..I mean I teach 16 yr olds how to drive, how can I not have patience...lol...But this is driving me nuts...and as I have the cd of the MRI, the ENT cant look over it until I bring it to him.....OK, one day at a time...I need to focus on my son leaving for Afganistan on monday...grrrrr...my b/day....will it ever end?????
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Do you mean tomorrow, or a week from tomorrow?? Not knowing is the worst.!!! Just show up there w/ the MRI in tears, see if they can get you in sooner. In my case, the radiologist wouldn't let me leave the radiolgy suite without giving me the results and calling my Dr's
good luck
Sam
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Next wednesday..... :( The ENT is flying out of town tomorrow and wont be available til next wed...so much for showing up on his doorstep.....grrrrrrrrrr
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That was my question.....if you mean a week from tomorrow, that's too long to wait. When I had my MRI, the doctor called me in 2 days and wanted to see me the very next day! Usually they wouldn't wait 8 or 9 days to see you. I would do the same as Sam said......show up at his office and tell them you CAN'T wait.
If the MRI showed something, I'm sure he could go over to the hospital and actually see the MRI himself. Our hospital and doctor is on the same computer system, and my doctor could pull up the MRI on his computer in his office.
I wouldn't wait..........I would go there tomorrow. That's asking alot of you to wait that long!! All they can tell you is NO......but I would stand my ground, and say you HAVE to see him.
Please keep us informed.....and I'm so sorry about your son leaving.
HAPPY BIRTHDAY!!
Lacey
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hmmmmm............anyone taking his place while he is gone???????
Lacey
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I wish it was as easy as going to his office...because the wait for an MRI here in Ontario is nine months to a yr, I had one done privately....and paid for it myself...they sent the report to the ENT two days later, but he was on holidays and just got back last week. I called last wednesday and the secretary said he took all his reports with him and will call me when he has viewed it. GRRRRRRR....Well I've waited two weeks now (had MRI done aug 5 so I guess another week wont hurt, but darn, its hard to sit and wait......I WANNA KNOW...but in my gut I know its AN....I have all the symptons....I just want confirmation and go from that
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Hi Tena,
Not truly knowing is the worst feeling. When I had my MRI I waitee 6 days for my diagnosis. My ENT didn't say what he hoped the MRI would show -- he said he didn't want to speculate, but the audiologist mentioned she'd had an MRI to rule out a tumor, so I looked the MRI up on the internet. It showed a laundy list of possibilities for what he was looking for and even though I only waited 6 days, it was agony so I know how you feel. If there is absolutely no way you can get confirmation on what it shows, the best advice I can give you is get busy and stay busy-- try not to dwell on it you'll just drive yoruself crazy. Good luck to you and please keep us posted. Sorry to hear your son is going to Afghaniistan. You will both be in my prayers. Wishing you the best birthday possible,
Wendy
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Hi Tenai,
I also live in Ontario, so I thought you would find it useful to share experiences. Whereabouts to you live?
I have been following your posts and I am not impressed with how your GP and ENT have handled the case. First of all, the waiting times for an MRI in Ontario are NOT 9 to 12 months. It depends on the priority that your physician writes in the requisition. I have had quite a few MRIs, first many years ago for an unrelated knee problem, and then for the AN. At most (knee case, which was not urgent at all) it took 3 months. And this is in Kingston, which is a small town. I know that fellow ANers in Toronto have had much faster turnaround times. So probably your ENT used the lowest priority in your requisition.
Second, your ENT should have given you at least a phone call to inform you. It is not fair having you wait for a week. The bright side of this is that since they haven't called you right away, it is probably something benign like an AN, otherwise they would have informed you right away. I remember thinking after my MRI that since a few days had passed and nobody had called me it was probably not life threatening.
The other thing that you may expect is that your doctors will probably not have a lot (if any) experience with ANs. So it is important to insist on getting not only one but several referrals for further consultations. You can even insist on whom you want to be referred to (something that I didn't know - I was initially referred to a neurosurgeon here in Kingston who is a very nice guy, but obviously had no experience with ANs). There is a wealth of information in this site, and quite a few people from Ontario who can give you advice.
This is not a pleasant situation, and especially stressful before and right after the diagnosis. The best thing you can do is be armed with as much information as possible. Feel free to send me a PM if you have any questions.
Marianna
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Thanks Marianna...I am in Pembroke...about a 3 hour drive to Kingston. As a matter of fact, I was in Kingston on Monday. I have recently learned that if one wants to get MRI done in the wee hours of the morning, your chances are greater. My MRI was done on August 5/08..The report was sent to my ENT Aug 7/08...I have called their office twice to get information...I know it isnt life threating, but I still WANT to know ASAP..I have a life and want to continue it and not put it on hold..As I 've stated before I am scheduled to fly out to Mexico Jan 3/09 and back Feb 14/09..Home for two weeks then off to Florida for a month...I will NOT give up these holidays unless life threatening. I also need to fly out to Edmonton Alberta sometime in April or May to visit my son and his first newborn (due Feb 6/09)....I aslo have another grandchild due Nov. 4/08...So has u can see, I want to get this all in perspective and deal with it....Where did you have your treatment done? What were the post of effects???
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Marianne, ok got it..u had GK in Toronto...and the ENT put high priority on the requisition form which I have a copy of...I did ask for a copy of the report sent to him by the private clinic, but the secretary said it was on his desk and just to come for the visit in a week...grrrrrrrr
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So, we are both in Eastern Ontario. It will obviously be a problem in Pembroke to find specialists etc., but there should be lots of good doctors in Ottawa. It might take some time for the referral to the specialist, so you will have to be pushy.
Being diagnosed with an AN unfortunately means great disruption on ones' life. I bet nobody in the forum wanted to have to deal with such a thing, but in the end it always works out, one way or another. You may need to adjust your plans accordingly, if you can't do otherwise. Luckily with ANs there are usually many options, depending on the size/location and there is no rush to do anything. Since right now you don't have any of this information, it is hard to tell.
I also wanted to have the least disruption, having two very young kids, family overseas so not able to provide a lot of support in the case of surgery, and a very busy and highly demanding job. This is mostly why I chose GK, even though very very borderline. It just wasn't the right time for me to have major surgery. But if surgery was my only option, then I guess I would have to deal with it.
For now all you can do is wait, and this is just the beginning of the journey. There is lots of support here, and I can see that you are already very well informed, having basically done your own diagnosis. Puting everything in perspective is important and I hope that your diagnosis will be such that it will allow you to reach a treatment decision easily.
Marianna
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Hi,
I am also in Ontario (Toronto) and have generally been able to get MRIs pretty fast (and where i didn't like the timing i was sometimes able to bump it up). I did have 2 of the 3 i've had at weird hours, but not soooo bad for me as i don't live so far from the downtown hospitals.
Hi MK!
I had surgery in early June (in Toronto) and would be happy to share any insights you might be interested in.
Trust you will find the people on this site super nice and helpful. Sorry about all this crap for you, but your holidays sure sound nice! I am sure you can enjoy these still without too much disruption.
Good luck and take care.
Trish
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Thanks everyone for all the support...but my agony is nothing compared to a families that have lost loved one in the wars that are taking place..I just lost a beloved friend yesterday.
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my heart goes out to you. waiting is torture. i am sorry. patti
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tenai98,,
If you paid for the MRI, I would think that they would have to provide you with the radiologist report. Can you ask them for a copy of the report, rather than waiting for your ENT? But I admit I know nothing about how the flow of medical information works in Canada.
I ask for copies of the MRI and the radiologist report, here in the US, and the report sometimes gives me a little more information than talking with the Neurosurgeon. You have to become familiar with some of the medical terms and how they phrase things. But I like having all the details.
Regards,
Rob
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I did ask for the report but his secretary said it was on his desk....duhhhh...but right now this is the least of my worries....my son's best friend was killied in afgan on wed and my other son leaves for that horrid place on monday....
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tenai98~
I am so sorry about your friend's son and can't even imagine the agony you are facing knowing your son is going there. Know that I am praying for you to be able to find some PEACE in all of this...
K
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HAve you tried putting the CD in your computer? Mine worked. I was able to view all of my MRI scans, even though I wasn't sure what I was looking at. These were scans one year after surgery so I did know to look for the bright white and I didn't see it.
It might help?!
I'm sorry to hear about your friend's son and best wishes to you and your son.
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Yes I have looked at the cd of the MRI and I can see the white spot on the left side. and there isnt any spots on the right side...I've compared it with other MRI posted on net and I know, I just know in my gut its AN...which is why I'm here...Plus all the symptons fit
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Does your CD start up with software for viewing the MRI? On mine, a program opens up. Besides showing the pictures, there is a button called Notes. When I click that, the content of the radiologist's report is displayed. If you are feeling impatient over the weekend, it might be worth poking around to see if you can find something similar.
Steve
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Steve, I'm going to check that right now...the cd does open up and I can see the tumor....it matches alot of tumors I see on here..on left side near ear canal ...white spot...so as I said I know its AN....The days will fly I'm sure...Going fishing today....saying goodbye to my son (who leave for afgan.) on sunday...seeing my son off on monday and probably pace all day tuesday....lol
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Hi Joann (right name, correct?)
I've been following along... and first, want to say a "welcome" to you. I've been trying to play "catch up" around here as its been rather busy here lately....
My daddy always taught me "never to assume".... ok, we know the doc wants to see you.,...... and you are noting things on the films that could/couldn't be what you think.... now, please try to take a deep breath. Let's see what the doc says to you as they are the trained eye for reading the films. Many here know I have multiple ailments (some curable, some not) and for me, I have certainly learned over time not to assume. I'm sending you all the good vibes I can.... I'm sending wellness wishes to you.... I want you healthy. I'm taking a deep breath for you and if it is an AN, then you know we are all here to support you. If its not an AN, then we are still cheering you on.... and if its nothing of concern (my ultimate wish), well, heck... send some good vibes back to us, will ya?
I believe in the power of positive thinking.... I believe in mind over body.... I believe that regardless of what the dr tells you that you are going to do what you need to do to hang tough, with all of us cheering you on.
Please hang tough.... let's see what he says. I know the wait totally stinks (I'm in waiting mode as well and it can really wear on us mentally), so heres the vibes and
huggles you need to stay strong.
Hang in there... and again, welcome.
Phyl
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Ppearl214 I hear ya....Its usually something I live by...DNA...Do not assume...I guess i'm kinda preparing for the worst and hoping for the best. But I will say that whatever it is IT will not defeat me...
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Joann -
IMO your attitude of preparing for the worst, but hoping for the best is definitely the way to go.
You'll get through this, and as Phyl said, we'll be here to cheer you on.
Good luck,
Jan
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Joann,
No, it will not defeat you, YOU will defeat IT. Great attitude; it will serve you well.
Best wishes,
Marci
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tenai,
So sorry to hear of the loss of your son's friend in Afganistan. What was his name? How long is your son going over for? How does he feel?
BTW, i grew up new Pembroke (Barry's Bay) and was in the army reserves for a summer at university so i spent some time at Base Petawawa.
So at this point are you still waiting on word whether you have an AN? Geez you are really ahead of the game already here on this site.
Good luck with all these challenges.
Trish
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I hope the days fly by for you. I'll pray for the safety of your son. Please keep us posted. ((((((((((HUGS))))))))))
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Big thanks to everyone for their heartfelt support...My son left yesterday for Afganistan and will be gone for 7 months...The other young lad who perished over there was named Dustin. He was a friend of my youngest son (who served his tour this past yr in afgan). My son's departure yesterday was horrible...One, given the fact that is was my b/day made it bad. Then went he went for his roll call, he thought he would be able to come back to us and give us (his wife and two kids) a final goodbye..But he was told to board the bus..Luckily for a friend of his there with us, he was able to get ahold of an officer and explain that MIke didnt get his goodbye to his family...So they made him come off the bus. It was absolutely horrible...I wasnt with my youngest when he left as he lives out west.
As for "Booger", I visit my ENT tomorrow at 10. I have a load of questions for him. I'll either post tonight or tomorrow morning the results, but in my heart I know what I know...I've looked at to many MRIs not to be blind to the fact that their is a white mass there.
Joann
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Hi Joann-
Just read your thread again and noticed something that I wanted to comment on. You mentioned that your MRI shows a white spot on the LEFT side, rather than the right. What I learned from my own MRI is that the image is reversed - so that if you are looking at it, what appears on the left side of the image is actually the RIGHT side of your brain. So, the white spot is probably actually on the right side of your brain.
I just posted a picture of my pre-surgery mri on my blog (see below) and I had a right-side AN. If you want to take a look at my MRI on my blog, you may be able to see some simllarities or differences to your own MRI.
In the meantime, best of luck tomorrow.
Debbi
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Yes I know that the images are reversed....lol..i looked at the scan and saw the the L and R are reversed..... ;D
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(hi tenai, I had to load it to frappr to get it to work. All set... image noted.. Facebook wasn't working. Phyl)
(http://image1.frappr.com/pix1/i/20080826/7/6/4/7643293754bf8c25cf1652ea8aa4cc0d0_medium.jpg)
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geeeee...it didnt work...oh well i'll work on the pic later...going fishing ;D
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all set... picture uploaded... facebook was not working. Please hang in there.
Phyl
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;D Thanks Phyl...ur a godsend :)
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naw, I'm just me... glad to help.