Author Topic: Update on MRI  (Read 2451 times)

Moselle

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Update on MRI
« on: December 21, 2022, 03:01:11 pm »
I had a consult with a neurosurgeon at UCLA and they ordered me an MRI.  Have it scheduled for this Saturday morning.  It’s been 8 months since my first one.  I’m hoping a miracle that it is unchanged or reduced.  My symptoms have not changed.  Still deaf in the left ear.  No tinnitus and no headaches or anything causing pain.  Balance still the same since the beginning of diagnosis and before. It could be better but I’m able to walk fine and work.   UCLA is a good fit for me.  The other consults at other Specialist Centers didn’t feel comfortable for me.  This one seemed to know their business and wanted to help me seriously. 

Greece Lover

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Re: Update on MRI
« Reply #1 on: December 22, 2022, 11:29:42 am »
Nothing like a Christmas Eve MRI! Good luck!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

donjehle

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Re: Update on MRI
« Reply #2 on: December 23, 2022, 08:11:06 am »
Please update us with the MRI results, Moselle.

We are rooting for you!
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: Update on MRI
« Reply #3 on: December 28, 2022, 02:18:04 pm »
Results of MRI
It grew 1 mm in 8 months. 
April 10 2022 16 x 9 mm
Dec 24 2022 17 x 10 mm
No new symptoms.  Still deaf in left ear. 

Moselle

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Re: Update on MRI
« Reply #4 on: December 28, 2022, 11:16:44 pm »
Looks to me like I better start training like I’m going to be in a marathon cause if this continues to grow I need to get it taken out and best to be in top condition for a surgery like this. 

Greece Lover

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Re: Update on MRI
« Reply #5 on: December 30, 2022, 02:32:15 pm »
I suppose this "cold have been worse" but "could have been better."  Sorry!  If you've already lost hearing, then it would seem there's not huge hurry for surgery.  Who knows what next MRI would say.  What did the Doctor say?

hang in there. And I had the same approach.  I was in the best shape of my life heading into surgery.  In fact my resting heart rate in the hospital was low that it was setting off the alarms!  One doctor came in and explained to the nurse, "He's an athlete."  Which, if you knew me and saw me, is a really funny comment.  But, I do think it helped to have been in good shape heading into it!

Good luck.
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

donjehle

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Re: Update on MRI
« Reply #6 on: December 31, 2022, 01:24:15 pm »
Please continue to give us updates, Moselle!

Why do I have these mental images of Greece Lover running through the olympic stadium in Athens with a large banner stating, "Victory!  I'm an athlete!"
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: Update on MRI
« Reply #7 on: March 08, 2023, 12:09:30 pm »
So my appointment with the doctor at UCLA yesterday got me referred to a brain surgeon which I have an appointment tomorrow morning.  Was told yesterday it is growing fast and bigger than what the radiologist said it was on the MRI report.  At least 3 mm in 8 months.  No new symptoms. 

donjehle

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Re: Update on MRI
« Reply #8 on: March 17, 2023, 05:40:35 pm »
Please don't keep us in suspense!  What is the latest news in your journey, Moselle?
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: Update on MRI
« Reply #9 on: March 23, 2023, 12:15:29 pm »
I had a consult with top brain surgeon this morning.  It’s growing at 4 mm per year.  I have a window of 1 month of getting it zapped once.  He is ordering an immediate MRI before a decision is made.   It could be surgery.  It could be pressing on my brain stem.   Depends on MRI now.  Hopefully that can happen ASAP.  What a crisis! 

Moselle

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Re: Update on MRI
« Reply #10 on: March 23, 2023, 12:18:34 pm »
No symptoms except my total hearing loss still in my left ear.  But this is real concerning this growth rate.  I been doing a bunch of self care treatments as suggested on watch and wait lately and added a few more. 

donjehle

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Re: Update on MRI
« Reply #11 on: March 25, 2023, 05:29:51 pm »
Thanks for the updates!  It has to be nerve-wracking waiting on what the MRI results.

Best wishes for the best decisions and the right treatment!
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: Update on MRI
« Reply #12 on: April 04, 2023, 11:12:24 am »
I got a joint consult appointment with the radiation oncologists at UCLA for the 14th of April to go over the plan.  That is good news.  No surgery.  There is hope for a one time zap.  The MRI results show it’s growing very fast.  1 mm in 3 months. 

Moselle

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Re: Update on MRI
« Reply #13 on: May 01, 2023, 11:38:33 am »
Today I do the Gamma  knife treatment.  One time zap. 

Moselle

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Re: Update on MRI
« Reply #14 on: May 01, 2023, 05:55:39 pm »
My treatment was using the Novalis TX.  Fairly simple.  Afterwards I got up and walked out with no symptoms.  I get an MRI in 6 months to check it.