Author Topic: My MRI is done. Fresh from the oven....  (Read 9119 times)

Jeff

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Re: My MRI is done. Fresh from the oven....
« Reply #15 on: October 24, 2005, 09:12:38 pm »
Great scan JW! I have been watching my remaining AN for nearly 4 years now. Here are some things I have learned. First, you can ask to have the radiologist's report sent to multiple doctors. When I get a scan, I always have a copy of the report faxed to my family practice doctor, who calls me when it comes in and gives me a copy. More recently, I have gotten my scans burned to CD. I walk out of the office with them, go home, pop them into my computer, and see how the "big guy" is doing (3.5 cm at last scan)  >:(. This really can take away that terrible stress of wondering.

Jeff
NF2
multiple AN surgeries
last surgery June 08

Windsong

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Re: My MRI is done. Fresh from the oven....
« Reply #16 on: October 25, 2005, 07:53:42 am »
John,

Your humour is so refreshing and welcome relief. I do hope you don't have an AN, though.

My very first MRI, the techie afterwards said oh, it's looking good, but you'll have to have the doctor confirm that, ok? Later the doc did say i had no tumour.....Now with the second mri which did find my AN, i was waiting for the techie to say the same thing. (i didn't have contrast for either by the way). Instead he said wow, you didn't move at all. So i left and went to the waiting room where a friend was waiting and we stayed a bit longer to finish watching this movie they were showing. So I looked around at one point and the techie had come out and was sitting behind me a ways looking thoughtful. That's when I got this feeling something had shown. But I didn't hear that I had a brain tumour for another three weeks from my doc.

All that was just as well as I had other things on my mind anyway.


No news can be good news though.
« Last Edit: October 29, 2006, 10:19:59 am by Windsong »

JHager

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Re: My MRI is done. Fresh from the oven....
« Reply #17 on: October 25, 2005, 08:48:36 am »
Hey John,

You got spiderwebs?  That's evolution!  My scan showed a fading image of Alfred E. Neumann - sort of a 'Shroud of Mad Magazine'.

At least spiders have a sense of self-preservation.  I just found out that once I've recovered from my AN surgery, I'm back in to have the frayed tendons in my elbow.  They call it 'tennis elbow', but I got the injury laying a new brick patio in my yard.  Turns out the bricks perfectly mimic the operation of my head!

Ah well, life goes on.  Last night a tried a round of martinis for 'contrast'.  Like gadolinium, it puts a new perspective on things!

There has to be a comedy routine in all of this - we can stand deaf ear to deaf ear and babble at the audience.  Abbot and Costello meet the tumor...

Take care, all!

Josh
3.5 cm right AN.  Surgery 11/7/05, modified translab.  As recovered as I'd ever hoped to be.

SVTCobra

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Re: My MRI is done. Fresh from the oven....
« Reply #18 on: October 25, 2005, 10:04:52 am »
John, glad to hear you have gotten your MRI completed!  It's a relief and a headache all in one, because now the wait starts for the results.

I think Nov. 4th is a little lengthy to make someone wait on the results.  I had my MRI done on a Monday and my doctor called me first thing Wednesday morning with the results.  I wound up having cochlear hydrops (meniere's) which closely mimics an AN.  Now, I can't eat any salt, which completely sucks by the way, but it's better than having an acoustic neuroma.

My MRI was done with and without contrast and mine came negative for an AN.  It's likely they might have seen something that negated the need for contrast.

Good luck, and I'll keep checking back to see how your results turned out.

lthompson

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Re: My MRI is done. Fresh from the oven....
« Reply #19 on: October 25, 2005, 02:55:08 pm »
Hi, you have a great sense of humor, I really enjoyed reading all of the posts today. 

Just to share with you some information I have learned in my AN journey.  I had my first MRI done in Feb. of 2004 and it was an open MRI with and without contrast, which in fact diagnosed my AN.  I found out after the fact that it is a big "no no" to have an open MRI when an AN is suspected, it makes the appearance of the AN blurry and therefore does not give an accurate size of the AN.  Closed MRIs are always the way to go.  In addition, I was told by all of the doctors that I have seen in regard to my AN (trust me I have seen tons), that when an AN is suspected the MRI requested should always be with and without contrast.  ANs (especially small ANs) need the contrast so they show up highlighted on the MRI image.  The contrast gives an exact clear picture of the AN whereabouts and the exact size. I have an approximate 6mm AN (which is considered small) and have been told that without using contrast on me, my AN probably would not appear on an MRI. 

So if your doctor ordered an MRI to rule out an acoustic neuroma, and the MRI ordered was with contrast and you didn't get contrast, I would call your doctors ofice and tell them that the MRI done today was given to you without contrast. He might just say you need to have another one done with contrast, I am not sure, or he might say not to worry about, let's see what the report says.

But honestly, it makes no sense to me why they wouldn't have just given you the contrast and knowing what I know about ANs appearing on an MRI I am not sure I would feel comfortable if they come back and tell me there is no AN in believing it since they didn't use the contrast. 

I hope and pray you do not have an AN (they suck) and I hope the issues you raised with your MRI get resolved.  Take care. 

 

 

jw

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Re: My MRI is done. Fresh from the oven....
« Reply #20 on: October 25, 2005, 08:01:47 pm »
John, glad to hear you have gotten your MRI completed!  It's a relief and a headache all in one, because now the wait starts for the results.

Hey, Cobra, good to hear from you again.  I thought they had banned your IP address after finding out you didn't have an AN!

You really had the best outcome, IMHO.  You didn't have AN, which is good, plus you also did get to find out what the problem is.  I worry that if it's not AN, they won't be able to tell me what is going on.

Thanks for the note!
Diagnosed 31 Oct 2005
Bilateral 0 cm ANs.

jw

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Re: My MRI is done. Fresh from the oven....
« Reply #21 on: October 25, 2005, 08:20:36 pm »
But honestly, it makes no sense to me why they wouldn't have just given you the contrast and knowing what I know about ANs appearing on an MRI I am not sure I would feel comfortable if they come back and tell me there is no AN in believing it since they didn't use the contrast. 

Thanks for your note and for sharing your experience with me.  That was my feeling regarding the contrast: if it comes back negative, how do I really know it is negative?

ANs, being rare, are pretty unkown in this neck of the woods.  We have 70,000 population in the city and only have had MRI for 5 years.  My family Dr. had never heard of AN until a couple of months ago.  He has 2 patients who have been diagnosed in the past 2 months with AN and then me.  I seriously doubt there have been any other AN patients here.

The MRI was done with a couple of technicians, but there isn't a radiologist there when the do the scans.  Apparently he reads them all once or twice a week and then sends his reports off.  I think they didn't use the contrast because they don't have proper protocol to follow for AN, or else they saw something that was clear enough without contrast.  (Thinking worst case scenario, I suppose.)  I think if was in Toronto where I had the AN done, they would likely have done things a bit better. 


I'm not really having a great deal of confidence in the MRI lab.  Even booking it was a bit of a problem.  I went in to talk to them (the receptionist was quite pleasant and seemed helpful) and she put me on the cancellation list.  They never did call me to say when the appt. was (I went in to talk to them and they had booked the date).  They also said they would call me with a time (I only had the date).  I called them on Friday to get the time and they had misplaced my form.  Guess they wouldn't have been able to call me with a cancellation, either?

I keep flip-flopping with my thoughts.  One minute, I think it through and realize that they didn't use the contrast because they didn't see anything, and there's nothing there.  The next I think that they didn't use the contrast because it was visible without.  I've spoken with some people who had it done in Toronto and theirs was without contrast as well.  Then I think that if they did see something they would have called me by now.  But then I realize that the radiologist might not even have seen the films yet.  And, they likely won't call, they would send the report to the doctor.  I asked if I could pick the report up at the hospital and they said that they can't give me any information without a release from my doctor.  Hey, you're talking about ME, why do I need a doctor to tell you it's ok to tell ME what you've found about ME?
The health care system in Canada is quite a bit different from the health care system in the US.

Well, I'll wait and see.  I'll also call the MRI lab and see if they have looked at the films and have any information.  And, I'll hound my doctor to call them and get the report as well.

Incidentally, this forum is a lot like eBay!  You get 'feedback' rating by the # of posts plus you get cool gold stars.  I'm already up to 2 stars!  Woo hoo.  If I do have AN, can I get a blue star?  I think you should give a star for every cm size for the AN.  3.4 cm?  3 blue stars for you!  If they find out you don't have an AN then you lose all of your yellow stars.  I'm sure the rules would read like those insurance policies your parents could buy for you when I was in grade school.  "Loss of thumb and index finger on opposite hand.  $15.00"  "AN measuring more than 5cm, add one additional star."
Diagnosed 31 Oct 2005
Bilateral 0 cm ANs.

russ

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Re: My MRI is done. Fresh from the oven....
« Reply #22 on: October 25, 2005, 09:56:45 pm »
Hi
  Must say I've never heard of MRI w/o contrast to image an AN. The contrast is only about $50 and allergic reactions to gadolinium are rare.
  I can see my ANs w/o contrast but must admit that with contrast, they are shining brightly and much more defined.
  I hope you are being seen at a facility which does a lot of AN removals.
  Best wishes for your long awaited results. If no AN shows, will you be comfortable and still with symptoms?
  Russ

jw

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Re: My MRI is done. Fresh from the oven....
« Reply #23 on: October 25, 2005, 10:02:48 pm »
I hope you are being seen at a facility which does a lot of AN removals.
  Best wishes for your long awaited results. If no AN shows, will you be comfortable and still with symptoms?
  Russ

Hi, Russ.

The MRI lab is at the local hospital.  There aren't any private MRI labs here, and MRI machines are few & far between. (Ontario, Canada).  Actually, I doubt they've ever seen too many ANs here.  My doctor has seen 2 (and those in the past 2 months alone!), but in the 20+ years previous, he had never heard of AN.  I would doubt that the MRI lab here has had any ANs (or suspected ANs) apart from me and the other 2 people.  And, I don't know for sure if they had theirs done here.

If it shows no AN, and was done without a contrast, would you feel comfortable (and still with symptoms)?  If it comes back negative, I'm going to ask for a referral to a neurologist in Toronto (there are a couple of reportedly good ones in Toronto who do quite a few AN removals from people across Canada) and get an AN done through him (or try to).  My doctor is generally very good about referring you to whoever, wherever you want, so I don't think that will be a problem.  The only problem might be having the neurologist actually accepting the referral?
Diagnosed 31 Oct 2005
Bilateral 0 cm ANs.

jw

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Re: My MRI is done. Fresh from the oven....
« Reply #24 on: October 26, 2005, 09:21:49 pm »
I did manage to get 2 more scans of my MRI today.  They asked me how aggressively I clean my ears.  I don't know why they would ask this.  Is this normal?  Secondly, I'm probably just hearing things (the technicians were on my right-side and I can't hear much out of that ear), but I could swear they were talking about someone with an AN the size of Texas.  Wow!  Wouldn't want to be that guy!






If you look at the second one from a distance, it almost looks like a thumb and a finger in the shape of an L.  (Hmm, sounds like it would make a catchy tune!).  For some strange reason, people (attractive women especially) make that VERY sign on THEIR foreheads when they look at me.
Diagnosed 31 Oct 2005
Bilateral 0 cm ANs.

shoegirl

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Re: My MRI is done. Fresh from the oven....
« Reply #25 on: October 26, 2005, 09:35:56 pm »
JW,

Thanks for the laughs and giggles! :D  I needed it today! 

Suzanne
left side 2.0cm x 1.3cm  
Cyberknife - 12/2005
The Barrow Institute, Phoenix, AZ