Author Topic: First Follow up after SRS (any)  (Read 177 times)

DanFouratt

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First Follow up after SRS (any)
« on: April 09, 2024, 10:01:14 am »
I went to UNC for my CK treatment. I believe they are technically excellent, however, my experience there as a customer/patient left me shaking my head at the time of service and since in my rescheduling of appointments.  I had to delay my 6 month follow up to allow for open heart surgery at Duke. The experience there was very different.  My question is has anyone not followed up with the Doctor who performed their SRS and simply went with another?  Thinking through it, I see no problem, but I may be a bit bias based on my past. 

All thoughts are welcomed as this is a big decision for me.

Thanks

Dan
Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23             TBD Not Scheduled

UkulelesAreAwesome

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Re: First Follow up after SRS (any)
« Reply #1 on: April 09, 2024, 06:30:09 pm »
I follow up with the neurotologist and neurosurgeon who performed my gamma knife. I do a video visit with them annually. But I live 3 hours from the hospital so I have my annual MRI and hearing test done locally and the results are sent to the U of MN where I had gamma knife. I'm very happy with University of MN. I just don't like the long drive. I've had no problems with doing my MRI locally.. I think they can give you a copy of all of your MRI images and all of the medical reports.

donjehle

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Re: First Follow up after SRS (any)
« Reply #2 on: April 14, 2024, 06:57:38 pm »
Dan, I think you need to have a sense of confidence in your treatment team (and that includes the hospital).  We're not talking about placing a bandaid on a cut finger here; we're talking about your brain!  And, if any aspect of your treatment does not satisfy you, Dan, there is no harm in seeking care from another team who are willing to treat you in the manner you desire.  As my ENT told me, "Seek the best care you can when it comes to your brain!"

Best wishes on your continued journey, Dan, and thanks for your active participation in our forums!
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.

DanFouratt

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Re: First Follow up after SRS (any)
« Reply #3 on: April 16, 2024, 05:26:06 am »
I reached out to my ENT who was the watch and wait doctor for two years and in my world of doctors the number 2 I respect the most.  (Number 1 is my cardiologist in MI who I spent 15 years visiting, who also came to my side for my recent OHS.) After dumping ENT to go radiation he was very graceful and agreed to monitor me going forward.  When reviewing my options I was speaking with another leading doctor who knew my ENT.  She stated it sounds like you are going radiation, have you told your ENT?  I said no and I do not think he will be happy.  She knew my ENT and confirmed he will not be happy.  However all that is behind us and he said yes.  We agreed to wait until after my next appointment with the Cardiologist (two weeks from today) to pick a date for the follow up.

Glad that process is behind me.

thank you,

Dan


 
Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23             TBD Not Scheduled

DodgeAU

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Re: First Follow up after SRS (any)
« Reply #4 on: April 16, 2024, 06:55:10 pm »
Dan, in my case I did the GK in Melbourne, Australia. Since I live in Sydney, I go for the annual MRI here. Then the MRI results are forwarded to the Doctor in Melbourne who performed the procedure then arrange a video call to discuss results. So far it is working for both of doctor and myself.
Sep 2023: AN shrunk by 3mm
Jun 2023: Hemifacial spasm disappeared
Oct 2022: MRI shows no growth, hemifacial spasms started
Mar 2022: GK treatment at Peter Mac Melbourne
Dec 2021: 18mm x 10mm
Oct 2019:  12x7 mm, Watch mode
Mar 2019: 7.5x5.5 mm, Watch mode
Aug 2018: Diagnosed 6x4x4 mm AN left