Author Topic: Follow up MRIs  (Read 1516 times)

Moselle

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Follow up MRIs
« on: May 24, 2022, 05:56:50 pm »
In April I was diagnosed with an Acoustic Neuroma from an MRI.  The ENT that originally saw me doesn’t want to handle it as it’s is not something they see.  I have had a telehealth appointment with UCSD and they recommend an MRI in October.  I have other consults lined up in June as well. How do I get a new MRI in October?  I live far from big city to see an ENT regularly.  Has anyone been able to get an order for an MRI from a long distance doctor?  I’m about 4 hours away from a big city that would handle this.  I have a 15mm tumor and no symptoms excel severe loss of hearing in left ear. 

donjehle

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Re: Follow up MRIs
« Reply #1 on: May 25, 2022, 03:16:46 pm »
Hi Moselle!  And thanks for posting!

It is wonderful that your ENT does not want to handle your AN.  It is much better to have someone who deals with Acoustic Neuromas all the time than someone who doesn't see them very often.  My ENT told me that in his very busy practice of seeing thousands of people every year, he may only see one or two AN.  So, it is much better for those with expertise to handle this for you.

Also, I'm glad you have a telehealth appointment with UCSD.  They are some of the best AN experts in the country.  They know what they are doing there.  Since acoustic neuromas grow very slowly, the recommendation is usually 6 months to a year for a second MRI.  So, since you had your first one in April, having your second one in October makes sense.

Where did you have your initial MRI done?  Would it be convenient for you to have it done at the same place?  You can then have the MRI images sent to UCSD or whatever medical center you want.  My primary care physician ordered my MRI to be done locally for me, and then I had the images sent to neurosurgeons at Emory University and at the Mayo Clinic.  My PCP was glad to order the MRI and then have the images sent out.  That was she would receive reports from the specialists and be aware of what they were saying about her patient.  So, hopefully, you won't have to travel too far to get the new MRI in October.

Best wishes on your AN journey!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

Moselle

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Re: Follow up MRIs
« Reply #2 on: May 25, 2022, 05:30:56 pm »
Thanks for the uplifting encouragement!  I don’t have a PCP since I moved and changed insurance.  I signed up at the VA recently and have a dr there but this area doesn’t deal with these tumors.   The  good news is I found out UC San Diego can order the follow up MRIs at the place I originally had my first MRI.  My insurance covered it last time.  And yes, I am much more comfortable talking to a dr that sees these tumors regularly in their specialty. 




donjehle

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Re: Follow up MRIs
« Reply #3 on: May 26, 2022, 08:11:09 am »
I'm glad to hear that UCSD can order the followup MRI for you where you had it done before and that your insurance covers it!  With all the anxiety of having an AN, you don't needed added stress, Moselle.  Thanks for sharing that!
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

skier

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Re: Follow up MRIs
« Reply #4 on: May 28, 2022, 08:56:31 am »
Grateful for this conversation, friends.

I used the idea that my family physician could order my 6-month MRI, when 2 institutions where I had been seen for second opinions had been slow, hesitant or unable to advance it. My family practice MD was very happy to help, and had it ordered at the right hospital while we spoke.

Grateful again for the ANA, and for this chatboard, and this thread.

It appears to be "normal" procedure that you can be followed for the AN by one physician, who can order MRIs for your treatment, but I got caught in a situation where I don't really have a following specialist as of yet. Having 5 second opinions was helpful, but I haven't chosen any one specialist to follow me... because I haven't chosen a treatment plan... because I haven't seen the 6-mo MRI results.

It is a bit of a maze to work with this diagnosis, to say the least.

To be continued...
Skier
« Last Edit: June 21, 2022, 03:52:03 pm by skier »

donjehle

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Re: Follow up MRIs
« Reply #5 on: May 28, 2022, 11:35:35 am »
Continue to keep us posted on your progress, skier!  We are truly rooting for you!
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

 


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