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AN Issues / Re: MRI Without Contrast
« Last post by JLR on June 14, 2018, 03:58:30 pm »
HI Pamela and Clarice, I have had over a dozen MRIs all with contrast.  I would be afraid not to for fear the radiologists would miss something.  Always have test to in sure kidneys are fine and after the test plenty of fluids to wash out the contrast which can settle in the kidneys.  Good luck, Joan
AN Issues / Re: MRI Without Contrast
« Last post by CHD63 on June 14, 2018, 05:29:46 am »
Hi pamela1012 and welcome to this forum,

We are a great group of people made up of patients who have or had an acoustic neuroma, caregivers, or people interested in ANs.  We are not posting as medical professionals.  We share our experiences and opinions, but ultimately each patient must determine what they will do next.

That being said, I am just curious as to what you mean by mildly allergic to the contrast.  An MRI with contrast is the gold standard for finding even a tiny acoustic neuroma.  Larger ANs will show up on a CT scan or MRI without contrast. 

If you are paying out of pocket, I would ask more questions about the danger to you with having the contrast material.  My imaging centers where I have had MRIs always require a Creatnine (kidney function) test prior to the MRIs with contrast.  I have had 12-13 MRIs with contrast and never had an issue, but that is just me.

Best wishes.
Radiation / Radiosurgery / Re: Side effects after proton beam radiotherapy
« Last post by JLR on June 14, 2018, 04:31:09 am »
Hello I had Trigeminal Neurslgia 5 years after Cyberknife. The Tegetol worked great for a few months. But the tumor was still growing and leaning on the nerve root causing the pain.  Had surgery 2016. I now have facial issues.  And now this is odd... I always had a slight wave with my hair but it overnight recently became curly. I mean tight curls. Anyone have same problem.
AN Issues / MRI Without Contrast
« Last post by pamela1012 on June 13, 2018, 07:40:55 pm »
Went to ENT for bothersome tinnitus in right ear that started a few months ago.  Turns out I have pretty significant hearing loss in that ear as well, especially at the higher frequencies.  I am scheduled to get my MRI on June 18th "to rule out an acoustic neuroma," however, I am mildly allergic to the contrast.  The imaging facility requested a prescription for prednisone and benadryl from my ENT, but rather than prescribe the meds, my ENT changed the MRI request to "no contrast."  I'm thinking that if I'm going to go for the MRI (paying out of pocket) I'd rather have it done right so I'm fighting for the contrast.  Is this a battle worth fighting, or is the MRI still accurate with no contrast? 
I believe 10 year hearing preservation rates between radiation and W&W on published data is very similar. Unfortunately many people on W&W just get frustrated and get radiation and surgery elsewhere. This leads to a loss of follow up and their data being excluded from the study.
This skews the results for W&W as progressing tumours Can be eliminated from the study.
Its difficult for researchers to factor this in, and becomes a “limitation of the study”

Is W&W better for long term hearing preservation than radiation?
It depends on which study you read. Either way it’s probably too close to call.

There does however seem to be a subset of people receiving radiation that out performs W&W for hearing preservation.

Treatment within the first year of symptoms
Under the age of 50
Good Hearing and Speech recognition at time of treatment
Less than 4Gy of radiation to the cochlear
Treatment volume less than 1cm3
13Gy or less as a treatment dose

Also many people that have radiation still retain some hearing, which is very useful for direction even if they can’t understand speech. This is not factored into many studies
Thank you for the feedback. Much to consider here as my symptoms now include some implication of the facial nerve. I'm concerned about the swelling issues with any of the radiation treatments.
AN Issues / Re: Another new guy...
« Last post by golfguy49 on June 13, 2018, 09:02:10 am »
Oddly enough, I feel some improvement as well. I don't have my tests until late August, but my balance feels much better than it has in months (in fact, I don't even notice any balance issues) and my hearing is stable.  Tinnitus is there, but I have learned to live with it so much I almost never notice it.    I wonder if any of this "improvement" we experience has to do with a combination of weather and seasonal changes that not only affect temperature and barometric pressure, but also mood and distraction levels.  I, for one, am far more busy in the spring and summer of the year than I am in the winter, and I think it does my health a lot of good to keep busy and moving, even for the tumor in my head.
The margin of error on measurements is usually 1-2 mm,  not .1 mm.  Just depends on what slice of image they take the measurement from.  I wouldn't be too concerned about keeping the CD. After all what good is it doing you?  If you really want to keep it just have the radiologist make another CD and have them send it to the doctor. They should do that with no problems.  Also keep in mind that the neurosurgeon might come up with even different measurements than the radiologist.  For at least 4 years on my MRI's the radiologist said it was stable and the same size however the neurosurgeon always said the tumor was smaller and receding off the brain stem. About year 6 the radiologist said the tumor was smaller. LOL.  The radiologist reports over a period of 8 years went from a page and a half down to just one paragraph with basically a synopsis.  They know the neuro is looking at the scans so they don't elaborate much.  I would also mention it's not just a matter of 2 or even 3 measurements.  The volume, shape and location is what is most important to be considered. If you haven't done so  already,  I would consult with neurosurgeons that specialize and have vast experience in treating AN's.
My tumor is in the IAC. He did not receive the CD. Here is the reply the nurse posted from the Jefferson doctor ( (before he saw the addendum with the third measurement):

"The radiologist who issued the reading on the current scan (not the addendum report that I have not seen) indicates that the tumor is unchanged.
I am happy to look at the addendum MRI report and current MRI images. Of course, there is a variation in any measurement of approximately +/-0.1 millimeter. That is the limit the resolution of the scan. So, if one particular measurements defers from a previous scan by 0.1 millimeter, it may truly be unchanged."

So now the his office is asking me to mail or "drop off" the CD, after they cancelled my appointment. I'm not local to the office from home or work, and I'm reluctant to "mail" my only copy.

FYI - my measurement differed by 0.1 cm not 0.1 mm as the doctor mentioned.  Specialty is Otolaryngology/Head & Neck Surgery - Neurotology. 
3 years ago Dr. Friedman, one of the authors of that current article, told me that radiation would degrade my hearing faster than if I did nothing. I heeded that advice and so far I've done nothing, and my hearing has remained stable.

And yes, statistically, the chances of hearing preservation with middle fossa with small tumors, ranges from 50-70 percent (80 for some?) but there's the risk of the surgery and the risk of immediate SSD.
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