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Gamma knife for meningiomas

Posted by lisakuehl @lisakuehl, Aug 9, 2018

Greetings - do any followers of this group have any experience with the use of the "gamma knife" when arresting the growth of benign meningiomas? Thanks!

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elisabeth007 | @elisabeth007 | May 31 10:31am
In reply to @jmb73 "If you want to drive to Orlando, Dr. Fields is the best. He lectures on Gamma..." + (show)
@jmb73

If you want to drive to Orlando, Dr. Fields is the best. He lectures on Gamma Knife Ray Surgery. He did mine in 2019 and I had no problems. They do screw the mask into your head but only the lidocaine stings. I can talk you through it if you would like me to.

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Thank you for your kind offer “to walk me through” My concerns won’t be resolved by a walk through. My immunologist shares my concerns about not doing the gamma knife procedure while numerous auto-immune conditions are out of control. i can’t do what other people do with the same results—-instead i can end up in thyroid storm or an auto-immune triggered afib crisis

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jmb73 | @jmb73 | May 31 1:40pm
In reply to @elisabeth007 "Thank you for your kind offer “to walk me through” My concerns won’t be resolved by..." + (show)
@elisabeth007

Thank you for your kind offer “to walk me through” My concerns won’t be resolved by a walk through. My immunologist shares my concerns about not doing the gamma knife procedure while numerous auto-immune conditions are out of control. i can’t do what other people do with the same results—-instead i can end up in thyroid storm or an auto-immune triggered afib crisis

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I hope things improve for you. I will say a prayer.
take care

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jmb73 | @jmb73 | May 31 1:43pm
In reply to @elisabeth007 "i am unable to drive because of visual impairments. i would like to see someone at..." + (show)
@elisabeth007

i am unable to drive because of visual impairments. i would like to see someone at mayo for reasons including the ability to access with my south florida doctors and access my scans and medical notes on the epic system. However, i am delighted for you that you found an excellent dr

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Mayo clinic is the best. I agree that it's important that Drs. are able to see the big picture. Good luck and please keep me informed.

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elisabeth007 | @elisabeth007 | May 31 3:44pm
In reply to @elisabeth007 "Has anyone had gamma knife treatment (and radiation) for a meningoma?" + (show)
@elisabeth007

Has anyone had gamma knife treatment (and radiation) for a meningoma?

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What are the differences and pros and cons of proton vs gamma knife?

Fyi, from my 5/7/24 MRI report:

Left parasylvian meningoma

Rural based homogeneity enhancing mass w dural tail in the left sylvian fissure

Measures about 2.0 x 1.1 x1.5 cm

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elisabeth007 | @elisabeth007 | Jun 1 8:55am
In reply to @jmb73 "Mayo clinic is the best. I agree that it's important that Drs. are able to see..." + (show)
@jmb73

Mayo clinic is the best. I agree that it's important that Drs. are able to see the big picture. Good luck and please keep me informed.

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i tried to get an appt for a second opinion re my meningoma at mayo —the bureaucracy was so burdensome, i don’t have the energy to continue jumping through the flaming hoops required for a neuro or neuro-surgery consult. its not realistic for me to ask the neuro-surgery i don’t have confidence in for a referral to mayo. The pancreatic clinic at Mayo./florida was non-bureaucratic and helpful

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jmb73 | @jmb73 | Jun 1 11:29am

That's a bummer at Mayo. I hate bureaucracy. good luck

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 3 9:32pm
In reply to @elisabeth007 "i tried to get an appt for a second opinion re my meningoma at mayo —the..." + (show)
@elisabeth007

i tried to get an appt for a second opinion re my meningoma at mayo —the bureaucracy was so burdensome, i don’t have the energy to continue jumping through the flaming hoops required for a neuro or neuro-surgery consult. its not realistic for me to ask the neuro-surgery i don’t have confidence in for a referral to mayo. The pancreatic clinic at Mayo./florida was non-bureaucratic and helpful

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@elisabeth007, I'm sorry to hear that you are having trouble requesting a second opinion for a neuro-surgery consult. Am I understanding correctly that you were self-referring through the appointment request here: http://mayocl.in/1mtmR63

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elisabeth007 | @elisabeth007 | Jun 4 10:46am

Thank you Colleen. i did find the link and i have a telephone intake appt w mayo.

I also had a helpful appt with a neuro oncologist radiologist at local university medical hospital yesterday—which was very helpful. He fully supported me changing neurosurgeons and i have a zoom appt today with another neurosurgeon in the closest academic medical facility. Thanks for your help

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birdie1234 | @birdie1234 | Jun 5 11:43am
In reply to @elisabeth007 "i tried to get an appt for a second opinion re my meningoma at mayo —the..." + (show)
@elisabeth007

i tried to get an appt for a second opinion re my meningoma at mayo —the bureaucracy was so burdensome, i don’t have the energy to continue jumping through the flaming hoops required for a neuro or neuro-surgery consult. its not realistic for me to ask the neuro-surgery i don’t have confidence in for a referral to mayo. The pancreatic clinic at Mayo./florida was non-bureaucratic and helpful

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I have also tried to get an appt at Mayo Jacksonville and they told me 4-5 times they do not treat Meningiomas there. I couldn't get an appt from them so I called Duke and it was easy peasy!!

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thomhorowitz | @thomhorowitz | Jun 5 5:05pm

We call this a health care “system”💁🏼, Seems the whole reason Dr. mayo built the organization has deteriorated over the years.

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