Author Topic: Intracanalicular ANs poll  (Read 4963 times)

judyette

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Re: Intracanalicular ANs poll
« Reply #30 on: January 19, 2019, 11:18:42 pm »
I had my first MRI and was diagnosed with AN in November 2014. I had such a frightening experience in the MRI machine, due to anxiety and  claustrophobia, i didn't go back for the 6 month repeat.  Finally got up the guts to make another attempt in April 2017, different, slightly bigger machine.  That's when doctor said AN had grown a little, and destroyed the fundal cap (which to my understanding is CSF barrier) and now had extension into cochlear aqueduct.  AN was 5.3mm x 3.2mm on first report in 2014, then 6x4x4mm on 2nd report in 2017. 

I haven't had another MRI since that one.  Seems like there's no reason to.  I know the thing is still there, maybe a little bigger now, but maybe not.  And I know I just have to live with the symptoms I have.  I sincerely feel grateful that it's not growing out the CPA end of the IAC and impinging on the brainstem, which of course is the most common direction they grow (95% of the time according to doc).  I have huge empathy for people struggling with treatment decisions and the aftermath of surgeries that don't go quite as expected. 

*April15/2019:  I just learned today that I had misunderstood the fundal cap issue.  It is not a separate structure or barrier, but rather a fluid-filled space.  If it's not there, it just makes things more difficult for the surgeon, and lessens the chances for a successful outcome.  I apologize for having passed along incorrect information. 
« Last Edit: April 15, 2019, 09:41:48 pm by judyette »

notaclone13

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Re: Intracanalicular ANs poll
« Reply #31 on: January 20, 2019, 08:30:42 pm »
I feel your pain about MRI claustrophobia. I had a bad experience too. The machine was old and noisy and the technician didn’t say a single word to me throughout the 30 minute ordeal. Near the end I started to panic and called out, but no one answered. If it had gone on much longer I think I would  found a way to wiggle out of the tube. Next time around, they had a new machine that was quieter and actually had a voice feature that spoke to you,  telling you each time a new phase was starting and how long the phase would last. When you know what to expect it is so much easier.  Plus, I told the imaging facility about my bad experience and they gave me a different technician next time around. One that checked on me periodically, making sure I was OK. I have also learned that taking an anti-histamine with sedative properties, such as Dramamine is helpful. If you have some benzodiazepines handy such as Ativan or Klonopin that helps too. Whatever it takes to keep you from having a full blown anxiety attack.



DodgeAU

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Re: Intracanalicular ANs poll
« Reply #32 on: January 25, 2019, 07:05:04 pm »
My first MRI I had panic attack and was stopped. Then I found bigger or wider machines somewhere else where I managed to stay calm for 30minutes. I will have my first 6 month follow MRI next month just have to keep anxiety level to minimum.

For some reasons benzodiazepines, Ativan and the likes are banned in Australia therefore cannot get prescription from doctors.

My BPV seems gone now after 3 weeks looks like my body is self adjusting to the AN?
Aug 2018: Diagnosed 6x4x4 mm AN left
                Severe hearing loss and mild tinnitus
Mar 2019: 7.5x5.5 mm               
                Watch mode

notaclone13

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Re: Intracanalicular ANs poll
« Reply #33 on: January 26, 2019, 11:09:59 am »
I was not aware that benzodiazepines are banned in Australia. I understand that they consider such drugs addictive and therefore would not want to give you a prescription for them. But I dont understand why they would not allow the MRI facility to provide you with a one time dose to help you with your anxiety during a stressful procedure. My elderly mother took Ativan for severe anxiety and it was a miracle drug for her. If one is prone to claustrophobia or panic attacks an MRI would definetely be a trigger. The technician who gave me the MRI that induced my panic told me afterward that he actually had one patient wiggle out of the machine. I refrained from telling him that if he actually bothered to speak to the patient during the process and put the person at ease, it might not have happened. I was told that they can see and hear the patient the entire time they are in the machine, yet when I called out to him he did not answer. I started to wonder if I had been forgotten about which led to my panic.

DodgeAU

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Re: Intracanalicular ANs poll
« Reply #34 on: April 05, 2019, 04:38:48 am »
Hello again,

I got the results of my first 6 month MRI after diagnosis.
Size has changed to 7.5mm x 5.5mm Original diagnosis was 6mm x 4mm. There is marginal increase as per the report.

The otolaryngologist has discussed all treatment options (surgery, radiation, observation).
With all the information, testimonies, of many patients I have read in this forum, I'm quite happy and comfortable to watch and wait as long as possible !!

I was told that majority of small AN in IAC does not need intervention but radiation is an option if AN grows bigger. But since size and location of my AN is far away from the brain stem I am not really worried at this stage. 

Since latest MRI was done on different machine, is this within margin of error of machine scanning accuracy? Is it possible that my AN did not grow at all? By looking on the both scans could not see any real change in size.

My next MRI in 6 month time but this time I will be going to same machine as last time for more accurate figures.
« Last Edit: April 05, 2019, 04:46:32 am by DodgeAU »
Aug 2018: Diagnosed 6x4x4 mm AN left
                Severe hearing loss and mild tinnitus
Mar 2019: 7.5x5.5 mm               
                Watch mode

 


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