Colleen Young, Connect Director | @colleenyoung | Jul 5, 2017
Hi @jill333, welcome to Connect.
We've been introduced to you by your sister, @nancye3. Thank you for following along with this conversation. I invite you to join in as well.
Nancy and Jill,
To answer some of your questions about brain tumor care at Mayo Clinic, here's some information that you may have already seen from our website: http://mayocl.in/2uKVOYV
"Mayo Clinic's world-renowned brain tumor specialists work together with other specialists to deliver the most appropriate treatment for each person. Your brain tumor treatment team may involve neuroradiologists, neuropathologists, neurosurgeons, medical oncologists, radiation oncologists, neurologists, rehabilitation specialists and other professionals as needed."
The teamwork at Mayo includes working as a team across all 3 campuses in Phoenix, Arizona; Jacksonville, Florida and Rochester, Minnesota. Which campus to choose depends on personal preference, convenience of location as well as the availability of appointments and specialized equipment. For Stereotactic Radiosurgery you will likely be recommended to go to Rochester, Minnesota.
Nancy,
I’d like share this post from @audrapopp on Connect http://mayocl.in/2rX8ue2. Audra may also be able to share more information about Gamma knife surgery to add to the information you're getting from @pegorr. Peg, did you have both Cyberknife and Gamma knife procedures?
Thanks for clarifying, Peg. I can imagine that you're anxious about the surgery close to the optic nerve. I see you've connected with @barbarabx@kareniowa who shared their experiences with brain tumors close to the optic nerve.
I hope the sun is shining as brightly where you are today as it is where I am. It's a beautiful day.
Hi @nancye3 . My name is Peg and I have multiple meni's. I have had surgeries and radiation. Both have turned out well. I am 3 yrs past my cyberknife radiation. I had two areas radiated, a tumor lying next to my brain stem and one behind my right eye, which has also had surgery. My side effects from radiation have been minimal,a very small hair loss,fatigue & a red meat craving for 2 weeks after radiation:-) assuming I needed some iron, and once in a while a seemingly brain fog, but it's hard to determine what exactly that is from, age, new tumors on left side, etc. but I don't think the radiation. I felt safer after the radiation, since it's halts the tumor growth. I'm not sure how it is determined which type to use, gamma or cyber, but I think it may have to do with the size of the tumor. I believe if the tumors are too large surgery may be the only option. The cyber is painless, & I have a pretty cool post radiation mask I'm not sure what to do with:-) I am planning cyber-knife radiation again in November to deal with the left side tumors and actually looking forward to it. I like to take care of business and move on with all the joys of life. Wishing your sister all the best. Ask me anything you wish. peg
@pegorr I do like your phrase "I do.....weigh all recommendations, do some critical thinking, and then make a decision." That is such a great way to handle health problems - it puts the control back in your hands and provides you with options. Teresa
My sister has an appointment at Mayo Clinic July 26th for a 3rd opinion for 3 recently diagnosed meningiomas. Has anyone been a patient of Dr. O'Neill or Dr Meyer at Mayo? She had a meningioma surgically removed in 2001 after a seizure.
My sister has an appointment at Mayo Clinic July 26th for a 3rd opinion for 3 recently diagnosed meningiomas. Has anyone been a patient of Dr. O'Neill or Dr Meyer at Mayo? She had a meningioma surgically removed in 2001 after a seizure.
We have a few members in the Connect community who have experience with meningiomas personally or with family members, and I’m guessing it’s likely one of them will know Dr. O’Neill or Dr. Meyer. Please meet @jackieerickson , @07ram, @pegorr , @lindajean, and @pennie . Others who may be able to give you personal information with these doctors are @robinlynn , @audrapopp , @jkenser and @lynda1992.
Meanwhile, you might want to take a look at Dr. Meyer’s Mayo Clinic bio, if you haven’t already, here:http://mayocl.in/2sXrqJp. Dr. O’Neill’s profile is located here: http://mayocl.in/2trNT4Z. I think these will give you lots of good information on their backgrounds, and you can watch a video of Dr. Meyer on his profile, as well.
Did your sister experience any more seizures after her 2001 surgery?
My sister has an appointment at Mayo Clinic July 26th for a 3rd opinion for 3 recently diagnosed meningiomas. Has anyone been a patient of Dr. O'Neill or Dr Meyer at Mayo? She had a meningioma surgically removed in 2001 after a seizure.
Dr. O'Neill has been my doctor for over 10 years and through his excellent advice has managed my meningioma's without surgery at this point. His advice to stay away from any hormonal therapy when I reached menopause and switching to only organic food along with no soy products ( because all can act like estrogen and "feed" the tumor growth) is what I attribute to my slow growth and the ability to watch and wait since my tumors are left frontal lobe and not causing any other issues. He is a hero to me!!!! A wonderful man who instills well deserved confidence thanks to his skill and kindness.
Dr. O'Neill has been my doctor for over 10 years and through his excellent advice has managed my meningioma's without surgery at this point. His advice to stay away from any hormonal therapy when I reached menopause and switching to only organic food along with no soy products ( because all can act like estrogen and "feed" the tumor growth) is what I attribute to my slow growth and the ability to watch and wait since my tumors are left frontal lobe and not causing any other issues. He is a hero to me!!!! A wonderful man who instills well deserved confidence thanks to his skill and kindness.
Thanks so much for your reply. My sister had some complications with her surgery in 2001, caused by a hospital induced infection. She had to have 2 more surgeries as a result and had a metal bone flap inserted. One of her new tumors is very close to it, another is close to her eye so is inoperable. One neurosurgeon suggested she immediately have Gamma Knife, the other suggested Cyber Knife and possibly surgery. We both have been in communication with Colleen on this site. She has been trying to decide between Johns Hopkins or Mayo. We live in Atlanta so neither are close by. Do you live near Mayo Clinic? If not, how are you able to go for all the follow up appointments. Your post has helped calm a lot of worry and anxiety!! I think watch and wait sounds like an excellent idea.
Thanks Again,
Nancy
We have a few members in the Connect community who have experience with meningiomas personally or with family members, and I’m guessing it’s likely one of them will know Dr. O’Neill or Dr. Meyer. Please meet @jackieerickson , @07ram, @pegorr , @lindajean, and @pennie . Others who may be able to give you personal information with these doctors are @robinlynn , @audrapopp , @jkenser and @lynda1992.
Meanwhile, you might want to take a look at Dr. Meyer’s Mayo Clinic bio, if you haven’t already, here:http://mayocl.in/2sXrqJp. Dr. O’Neill’s profile is located here: http://mayocl.in/2trNT4Z. I think these will give you lots of good information on their backgrounds, and you can watch a video of Dr. Meyer on his profile, as well.
Did your sister experience any more seizures after her 2001 surgery?
Thank You for your reply. My sister has been on anti seizure meds since her surgery in 2001. She had 2 seizures after her surgery but has not had another since. She is receiving conflicting information from two different neurosurgeons here as to a treatment plan. That is why she wants to seek a 3rd opinion from a top medical center with lots of experience with multiple meningiomas. She has been trying to decide between Mayo and Johns Hopkins. She called and made an appointment at Mayo on July 26. She is supposed to see Dr. O'Neill and Dr Meyer. Her tumors are small at this time but one Doctor thought she should have Gamma Knife right away, the other Cyber Knife or possibly wait 4 months to see if they have grown. He is the surgeon who operated on her in 2001. He also suggested surgery on one of the new tumors behind her ear to make sure it is benign. So needless to say she is very confused as to what to do. I am hoping her trip to Mayo will provide some much needed clarity on a course of treatment.
Thanks Again,
Nancy
Dr. O'Neill has been my doctor for over 10 years and through his excellent advice has managed my meningioma's without surgery at this point. His advice to stay away from any hormonal therapy when I reached menopause and switching to only organic food along with no soy products ( because all can act like estrogen and "feed" the tumor growth) is what I attribute to my slow growth and the ability to watch and wait since my tumors are left frontal lobe and not causing any other issues. He is a hero to me!!!! A wonderful man who instills well deserved confidence thanks to his skill and kindness.
Nancy, this is 07ram. I had a type II Meningioma removed in4/2015. The neurosurgeon overlooked a small piece of the tumor that is now lodged behind my right eye very close to my optic nerve. I had cyberknife radiation, 5 consecutive sessions on jan 2016. My surgery and cyberknife were done in Austin, tx. But I saw another neurosurgeon in houston tx. At md anderson, becuse my neurosurgeon said he wouldnt touch my remant tumor cause it was too close to my optic nerve. The neurosurgeon at md anderspn is Franco DeMonte. He said he would do my surgery, I told him that I didnt want another craneotomy, he told me that he wouldnt do a craneotomy, that he would perform the surgery through the side of my eye, but that he thinks that the surgery wasnt necessary now, that we could wait and see if the cyberknife radiation was helpful and watch and see. I am supposed to have mri this coming oct.i know your sister lives in Georgia, but she could consider md anderson with dr. DeMonte. Hope this helps
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Dr. O'Neill has been my doctor for over 10 years and through his excellent advice has managed my meningioma's without surgery at this point. His advice to stay away from any hormonal therapy when I reached menopause and switching to only organic food along with no soy products ( because all can act like estrogen and "feed" the tumor growth) is what I attribute to my slow growth and the ability to watch and wait since my tumors are left frontal lobe and not causing any other issues. He is a hero to me!!!! A wonderful man who instills well deserved confidence thanks to his skill and kindness.
There is actually a special Mayo # with the airlines that I got...Colleen could probably give it to you, it is in my file somewhere. It allowed for changes to reservations with no change fee if appointments necessitaed staying longer sometimes. I ended up back at Mayo for highly malignent breast cancer ( NOT related to my brain tumors) and the oncology unit for that kept Dr. O'Neil in the loop too. That has been 5 years ago, and now I am only having scans every so many years unless I start having symptoms like seizures etc. I have been told that it isn't good to have TOO much contrast over long term. I lived in Colorado for all this and would fly to Mayo at the beginning, but later I had my scans done local and then sent them to Dr. O'Neil for review. VERY handy, and I still had Dr. O'Neil's expertise. My Dad was a Dr. in Iowa and sent all his high risk patients to Mayo, so he would meet me at Mayo and sit in on all appointments and was VERY impressed with Dr. O'Neil!!!!
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Hi @jill333, welcome to Connect.
We've been introduced to you by your sister, @nancye3. Thank you for following along with this conversation. I invite you to join in as well.
First, I recommend that you + Follow the Brain Tumor group https://connect.mayoclinic.org/group/brain-tumor-support-group/
Nancy and Jill,
To answer some of your questions about brain tumor care at Mayo Clinic, here's some information that you may have already seen from our website: http://mayocl.in/2uKVOYV
"Mayo Clinic's world-renowned brain tumor specialists work together with other specialists to deliver the most appropriate treatment for each person. Your brain tumor treatment team may involve neuroradiologists, neuropathologists, neurosurgeons, medical oncologists, radiation oncologists, neurologists, rehabilitation specialists and other professionals as needed."
The teamwork at Mayo includes working as a team across all 3 campuses in Phoenix, Arizona; Jacksonville, Florida and Rochester, Minnesota. Which campus to choose depends on personal preference, convenience of location as well as the availability of appointments and specialized equipment. For Stereotactic Radiosurgery you will likely be recommended to go to Rochester, Minnesota.
Dr. Pollack (http://mayocl.in/2sH9XK8) and Dr. Link (http://mayocl.in/2tNdiX6) are our leading experts in stereotactic radiosurgery.
That's a lot of information. Please keep asking questions until you get answers. The members of Connect are listening.
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1 ReactionThanks for clarifying, Peg. I can imagine that you're anxious about the surgery close to the optic nerve. I see you've connected with @barbarabx @kareniowa who shared their experiences with brain tumors close to the optic nerve.
I hope the sun is shining as brightly where you are today as it is where I am. It's a beautiful day.
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Helpful -
Hug
2 Reactions@pegorr I do like your phrase "I do.....weigh all recommendations, do some critical thinking, and then make a decision." That is such a great way to handle health problems - it puts the control back in your hands and provides you with options. Teresa
My sister has an appointment at Mayo Clinic July 26th for a 3rd opinion for 3 recently diagnosed meningiomas. Has anyone been a patient of Dr. O'Neill or Dr Meyer at Mayo? She had a meningioma surgically removed in 2001 after a seizure.
-
Like -
Helpful -
Hug
1 ReactionWelcome to Connect, @nancye3.
We have a few members in the Connect community who have experience with meningiomas personally or with family members, and I’m guessing it’s likely one of them will know Dr. O’Neill or Dr. Meyer. Please meet @jackieerickson , @07ram, @pegorr , @lindajean, and @pennie . Others who may be able to give you personal information with these doctors are @robinlynn , @audrapopp , @jkenser and @lynda1992.
Meanwhile, you might want to take a look at Dr. Meyer’s Mayo Clinic bio, if you haven’t already, here:http://mayocl.in/2sXrqJp. Dr. O’Neill’s profile is located here: http://mayocl.in/2trNT4Z. I think these will give you lots of good information on their backgrounds, and you can watch a video of Dr. Meyer on his profile, as well.
Did your sister experience any more seizures after her 2001 surgery?
Dr. O'Neill has been my doctor for over 10 years and through his excellent advice has managed my meningioma's without surgery at this point. His advice to stay away from any hormonal therapy when I reached menopause and switching to only organic food along with no soy products ( because all can act like estrogen and "feed" the tumor growth) is what I attribute to my slow growth and the ability to watch and wait since my tumors are left frontal lobe and not causing any other issues. He is a hero to me!!!! A wonderful man who instills well deserved confidence thanks to his skill and kindness.
Thanks so much for your reply. My sister had some complications with her surgery in 2001, caused by a hospital induced infection. She had to have 2 more surgeries as a result and had a metal bone flap inserted. One of her new tumors is very close to it, another is close to her eye so is inoperable. One neurosurgeon suggested she immediately have Gamma Knife, the other suggested Cyber Knife and possibly surgery. We both have been in communication with Colleen on this site. She has been trying to decide between Johns Hopkins or Mayo. We live in Atlanta so neither are close by. Do you live near Mayo Clinic? If not, how are you able to go for all the follow up appointments. Your post has helped calm a lot of worry and anxiety!! I think watch and wait sounds like an excellent idea.
Thanks Again,
Nancy
Thank You for your reply. My sister has been on anti seizure meds since her surgery in 2001. She had 2 seizures after her surgery but has not had another since. She is receiving conflicting information from two different neurosurgeons here as to a treatment plan. That is why she wants to seek a 3rd opinion from a top medical center with lots of experience with multiple meningiomas. She has been trying to decide between Mayo and Johns Hopkins. She called and made an appointment at Mayo on July 26. She is supposed to see Dr. O'Neill and Dr Meyer. Her tumors are small at this time but one Doctor thought she should have Gamma Knife right away, the other Cyber Knife or possibly wait 4 months to see if they have grown. He is the surgeon who operated on her in 2001. He also suggested surgery on one of the new tumors behind her ear to make sure it is benign. So needless to say she is very confused as to what to do. I am hoping her trip to Mayo will provide some much needed clarity on a course of treatment.
Thanks Again,
Nancy
Nancy, this is 07ram. I had a type II Meningioma removed in4/2015. The neurosurgeon overlooked a small piece of the tumor that is now lodged behind my right eye very close to my optic nerve. I had cyberknife radiation, 5 consecutive sessions on jan 2016. My surgery and cyberknife were done in Austin, tx. But I saw another neurosurgeon in houston tx. At md anderson, becuse my neurosurgeon said he wouldnt touch my remant tumor cause it was too close to my optic nerve. The neurosurgeon at md anderspn is Franco DeMonte. He said he would do my surgery, I told him that I didnt want another craneotomy, he told me that he wouldnt do a craneotomy, that he would perform the surgery through the side of my eye, but that he thinks that the surgery wasnt necessary now, that we could wait and see if the cyberknife radiation was helpful and watch and see. I am supposed to have mri this coming oct.i know your sister lives in Georgia, but she could consider md anderson with dr. DeMonte. Hope this helps
________________________________________
There is actually a special Mayo # with the airlines that I got...Colleen could probably give it to you, it is in my file somewhere. It allowed for changes to reservations with no change fee if appointments necessitaed staying longer sometimes. I ended up back at Mayo for highly malignent breast cancer ( NOT related to my brain tumors) and the oncology unit for that kept Dr. O'Neil in the loop too. That has been 5 years ago, and now I am only having scans every so many years unless I start having symptoms like seizures etc. I have been told that it isn't good to have TOO much contrast over long term. I lived in Colorado for all this and would fly to Mayo at the beginning, but later I had my scans done local and then sent them to Dr. O'Neil for review. VERY handy, and I still had Dr. O'Neil's expertise. My Dad was a Dr. in Iowa and sent all his high risk patients to Mayo, so he would meet me at Mayo and sit in on all appointments and was VERY impressed with Dr. O'Neil!!!!