Author Topic: From a newbie.. what are your top lessons learned?  (Read 1098 times)

mjeffris

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From a newbie.. what are your top lessons learned?
« on: May 21, 2019, 08:03:40 am »
Good morning. 

I've been newly diagnosed (13x12x9 mm), and am currently going through the discovery phase of this journey.  I would love to hear what your top few lessons learned are-- What are you glad you did?  What do you wish you had done differently? What questions did you ask your doctor(s) that you found most helpful?

I'm thankful for any replies.

Best,
Mike

kestes

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Re: From a newbie.. what are your top lessons learned?
« Reply #1 on: May 21, 2019, 10:05:57 am »
One of the first recommendations to me was don't panic, take your time and research.  I had that option because mine was 12mmx7mmx7mm.  so I consulted with 5 doctors.  I am from South Carolina so I went to MUSC, Duke, and sent my records to Dr. Friedman in San Diego.  I also consulted with radiation doctors Lunsford Univ of Pitt and Sheehan UVA.  I am a patient person so I decided to watch the tumor for 6 months and just see what it was doing.  It showed slight growth by only 2mm but I didn't want it to keep growing.  I had already made my mind up for Gamma Knife radiation because I am very active (biking, backpacking, mountain climbing) AND the fact I could live with the tumor in my head.  I went to Dr Sheehan UVA and had a great experience.  I am only 6 months out so I don't have a lot of info or data for you.  My radiation procedure was fine.  I had balance issues, tinnitus, hearing loss and fatigue PRIOR to GK and I still have it.  My hearing has slightly decreased and I am experiencing swelling of the tumor so I am having vertigo/balance issues right now.  For still a newby myself I overall am doing well. 

Everything is such a personal decision - where tumor is located, what are your symptoms, who you choose for a doctor, etc. 

My strongest suggestion would be to find a doctor who has treated MANY of ANs and then talk to people who had that doctor.  There are 3 Facebook groups also that were of great help to me in my decision making. 

Many of the AN doctors will do consults for free, you just mail your mri and your records.  Just depends on what doctor you are looking at. 

Best wishes! 
12mm diagnosed Feb 2018
14mm at 6 mo MRI Aug 2018
tinnitus, high pitch hearing loss, balance issues
GK at UVA Dr Jason Sheehan Nov 2, 2018
MRI May 2019, slight swelling of AN but showing necrosis - experiencing vertigo issues
Columbia, South Carolina

mjeffris

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Re: From a newbie.. what are your top lessons learned?
« Reply #2 on: May 21, 2019, 06:54:37 pm »
Thanks for sharing,  Kestes.  What made you decide that GK would
be your best bet at maintaining your active lifestyle?

Mine was discovered by accident, while I was having an MRI for something else (surprise!).   My symptoms are aren’t bad so far, so thought I that they were part of being middle aged. I realize now that I’ve just been lucky.  I have a couple of appointments lined up, so I’m learning as much as I can in the meantime.  I live just outside of Boston, but unfortunately I couldn’t get into Mass Eye and Ear until July 2nd. 

-mike

Gtmochi

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Re: From a newbie.. what are your top lessons learned?
« Reply #3 on: May 22, 2019, 03:57:30 pm »
Hi Mjeffris!

Like Kestes, one of the things I am glad I did was consult with several doctors.  Unlike Kestes, I am NOT patient. Not even a little.

Upon diagnosis, my first instinct was to get it all taken care of ASAP. But after I got through the panic phase, I spoke to a friend of my husband’s boss who had recently had AN surgery at UCSD.  He emphasized that I had time (my AN upon diagnosis was 2.5cm, his was 2cm). He encouraged me to speak to several doctors, and to be sure I spoke to doctors who specialized in surgery, radiation, and, if possible, doctors who specialized in both. He warned me that I’d get a variety of opinions, and that there was often bias in those opinions. He said the best thing to do was speak to several doctors, and from that data (and a lot fo soul searching), arrive upon an informed decision on what treatment to seek. That is, unless, you are someone whose situation does not allow choices! He also told me to bring someone along to my appointments to take notes. All his advice was spot on, so I am passing it on to you :).


I live in LA, so met with doctors at USC, UCLA,  and Pasadena. I sent my MRI to UVA, UCSD, Duke, and Stanford. When meeting or speaking with doctors, once they offered their opinion, I asked them why, for my specific AN, they liked surgery/radiation/watch and wait/whatever. The answers told me a lot.   


Ultimately, I went to Dr. Chang and Dr. Hancock at Stanford, and I am glad I did.  I had decided on CK, and wanted to go where tons of AN patients had been treated. I also really like that Stanford invented Cyberknife. To me, that meant that they had a lot of institutional knowledge. I also really liked that Dr. Chang does CK as well as surgery. Not everyone can go to Stanford (I live in CA,  and insurance said fine, so why not?) - nor is doing so necessary. There are tons of great doctors and facilities all over the country. Just make sure you go to someone who has a lot of AN experience.

Hope this was helpful!

Jessica
« Last Edit: May 22, 2019, 04:00:52 pm by Gtmochi »
Diagnosis 2/15/18, 2.5 cm right side AN, hearing 100%
CK at Stanford, 4/23-4/25/18, Dr. Chang and Dr. Hancock
6 month MRI: No change, central necrosis
1 year MRI: some shrinking and necrosis

kestes

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Re: From a newbie.. what are your top lessons learned?
« Reply #4 on: May 23, 2019, 08:22:47 am »
Mike, the reason I chose GK was after much prayer, consults with different doctors, reading stories of others, etc.  TO ME I felt surgery was very invasive when there was a least invasive option available to me.  Surgery seemed drastic  TO ME.  Now if it was pressing on my brainstem, I had horrible vertigo, numbness of the face,etc. then I would have felt differently.  Although I have every symptom of AN they are manageable.  There are risks associated with each option.  Oddly enough my very best friend and another good friend BOTH have AN and they live in the same town with me.  They both have had great outcomes one chose surgery and one chose GK.  Both are single side deaf, both deal with tinnitus, balance issues and brain fog.  It is just part of the AN process.  My best friend we have supported for 8 years with her radiation, her loss of hearing, her balance issues sooooooo imagine all of our surprise when I was diagnosed.  I know right....what are the odds.  We are in South Carolina. 

There is also the risk of malignant tumors from radiation - MANY people mention this, are concerned about it, etc.  Dr. Sheehan at UVA - my doctor was involved in a very recent study of this very fact and one 1 person was found to have malignancy in the GK site.  So the ultimate percentage was no different than a random person being diagnosed with a brain tumor.  You can google the article in the Lancet Oncology.  The best GK doctors in the world were all involved in this study. 

All that being said, I think each person has to decide for themselves.  I have much faith in God and GK was the direction for me.  I had peace about it and still do EVEN THOUGH I deal with side effects.  And again, I have the patience to let GK do its work which takes years.  Some people cannot handle the thought of a tumor and they want it out immediately.  Every person is so different. 

I don't know how my story will play out but I don't worry about the future.  I take each day as it comes to me! 

Kimberly
12mm diagnosed Feb 2018
14mm at 6 mo MRI Aug 2018
tinnitus, high pitch hearing loss, balance issues
GK at UVA Dr Jason Sheehan Nov 2, 2018
MRI May 2019, slight swelling of AN but showing necrosis - experiencing vertigo issues
Columbia, South Carolina

Maria Odete

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Re: From a newbie.. what are your top lessons learned?
« Reply #5 on: May 23, 2019, 11:29:32 pm »
Hello Mike,

There is one thing that I regret not having done shortly after my AN surgery; that was to have had the hypoglossal -facial anastomosis procedure.

Thankfully to my God Yahweh, my face recovered nicely over the years. My daughter is a physician, and she can't tell what side of my face is affected with the palsy when my face is at rest.

Maria Odete

Surgical Team: Dr. Fraser Noel, Neuro-Otologist and Dr. Michael Boyd, Neurosurgeon
« Last Edit: May 23, 2019, 11:36:30 pm by Maria Odete »
Dx: 3.5 cm Acoustic Neuroma. Complete Resection.
Year of Surgery: 1992

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mjeffris

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Re: From a newbie.. what are your top lessons learned?
« Reply #6 on: May 31, 2019, 09:32:38 am »
Thanks for sharing your stories.  It's great to learn from your experiences.

I was able to push my appointment at Mass Eye & Ear up to next week.  I'm ready to start the process, whatever that turns out to be.

 


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