Author Topic: Gamma Knife at Mayo  (Read 1682 times)

sds55@charter.net

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Gamma Knife at Mayo
« on: July 13, 2018, 08:48:36 pm »
I would love to hear about Gamma Knife at Mayo.  I’m currently on watch & wait, but am considering GK when & if the time comes.
Thanks!

darcys

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Re: Gamma Knife at Mayo
« Reply #1 on: April 17, 2019, 05:44:34 am »
Hi - Hope this isn't too late - I had GK at Mayo in June of 2015 with Dr Link. I can't say enough good things about Mayo, or about Dr Link. The procedure was flawless, and other than the headframe, painless. Mayo does a great job with follow up, I  send my yearly MRIs to Dr Link for review and consult, and am actually considering going back to Mayo for my annual MRI this year due to dissatisfaction with my local dr. Knowing what I know now, I would absolutely have GK again, and absolutely do it at Mayo.  Good luck.

notaclone13

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Re: Gamma Knife at Mayo
« Reply #2 on: April 17, 2019, 07:47:12 am »
Hi Darcy,
Thank you for posting about your Gammaknife experience at Mayo.  Would you mind sharing a few more details with those of us in watch and wait that are considering Gammaknife in the future? What was the size of your AN at the time of treatment and did you experience side effects besides pulsatile tinnitus afterward? Has you AN shrunk in size since treatment? those of us that are considering Gammaknife in the future are very appreciative of those who post after treatment to let us know what to expect.  Thanks

darcys

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Re: Gamma Knife at Mayo
« Reply #3 on: April 17, 2019, 02:54:46 pm »
Sure, happy to share.
I was diagnosed in July 2014 with a 1.5cm AN. I didn't have any hearing loss, just some sound distortion on one side that had been misdiagnosed for years as allergies. After my diagnosis I sought consults from two doctors in Chicago, as well as at Johns Hopkins and 2 different doctors at Mayo (one neurosurgeon who just did surgery, and Dr Link who does both GammaKnife and surgery) Over the course of the year while I was researching, the tumor grew to 1.8 cm, so it was time to make a decision. I was told that due to the size of my AN (medium sized) and due to my age (54) I would be a candidate for either GammaKnife or surgery, it was my call. But Dr Link clarified it for me when I asked him for his opinion on which direction to go, he said "why would you cut your head open if you don't have to?" 
The GK procedure itself was a breeze, and I had no side effects for about 3 months. After that I did experience moderate balance issues, especially when ascending stairs, and when walking in the dark, for about 9 months. I did have balance testing in 2018, determining I have 20% vestibular function on my AN side, it doesn't bother me too much, but I do fall more than I used to.  I did not have any facial issues, other than my sense of taste is sometimes confused, (sometimes salty tastes sweet, spice is amplified, etc) which is a really weird concept. I do have moderate to severe constant tinnitus, worse when I'm tired, which is by far my most intolerable side effect. I have retained about 50% hearing on my AN side, but I believe that will likely continue to diminish.  My tumor did show subtle growth at the 3 year mark, prompting my local neurosurgeon here in CT to recommend immediate surgery, but after a consult with Dr Link at Mayo I will schedule a follow up MRI in  12-18 months to assess the status. I am hopeful it has stabilized, but in any event, I have total confidence in the team at Mayo, and will definitely return there for any future procedures that may be necessary. 
I know every situation is different, but hopefully this helps. I did a lot of research, met with 5  different doctors and finally came to a point where I was confident in my decision. For me finding a doctor who I had confidence in was the key to eliminating the stress. Hopefully the GK did the job and tinnitus, minor imbalance and moderate hearing loss are all I have to deal with on an ongoing basis. As previously mentioned, GK was the right procedure to me at the time, and I would make the same choice again. If I could give one piece of advice it would just be research and continue to seek consults with doctors until you are satisfied. Uncertainty is stressful for me. I wish you the very best of luck.

Nic-Ruby

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Re: Gamma Knife at Mayo
« Reply #4 on: May 01, 2019, 10:04:52 am »
Darcys,
Thank you for sharing.  I've been experiencing similar side effects as you mention (other than the taste issue) and it is very helpful to have your detailed account.  Feeling quite dizzy today and needed a reminder that I'm not alone.  I'm only 4.5 months out from my procedure but I would do GK again.  I chose not to wait and watch for peace of mind.  After weighing the pros and cons of all the treatments I felt GK was the best option and I was taken very well care of at the Swedish Hospital in Seattle under Seattle Neurosurgery Dr. Landis and Dr. Kim.  Best wishes with your journey notaclone13 and sds55.
Sudden Hearing Loss 5/2017, Steroids, Hearing mostly restored.
Trigenimal Neuralgia 3/18, Trileptal mgmt of pain
MRI Diagnosis 7/18
VS 10mmX6mmX4mm
GK 12/17/18 at Swedish Hospital in Seattle

bfoley

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Re: Gamma Knife at Mayo
« Reply #5 on: May 21, 2019, 07:58:04 am »
darcys -
Thank you for the details.  I am scheduled June 10 for a consult with Dr. Link and your post made me feel that I am on the right path.  Are you/have you considered hearing aids? 

sds55@charter.net -
Have you made any decisions about treatment?  When is your next MRI?  I was going to try W & W, but symptoms became more pronounced and I cannot afford to get worse with my balance.

All - Thank you for sharing.  Its nice to hear from other folks who get what you are going thru!

darcys

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Re: Gamma Knife at Mayo
« Reply #6 on: May 27, 2019, 03:48:07 pm »
bfoley-
Best of luck at your appointment with Dr Link. I think you'll find Mayo lives up to the hype, the facility and staff are very impressive, I've never seen a hospital that runs so smoothly.  I haven't looked in to hearing aids. My hearing is still functional on my AN side and I don't have good insurance, so I'm holding off.  The worst part of GK is the placing of the head frame, and while it's not fun, it's over in just a few seconds. My husband is still disappointed I didn't ask for a pic when I had the head frame on...haha.

 


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