Hi, I have a Meningiomas tumor on right back side of my head near brain stem that is dumbell shape toward neck it has most of life threatening nerves in it. Have lost hearing on right side. Drs in Switzerland told me surgery too dangerous due location and nerves, radiation not good either they thought more good tissue would be damaged. Suggested a embolization of the brain tumor to stop blood feeding it. Had this procedure done and tumor shrunk by 30% and has stayed stable for last 3 years. Now I watch and wait. Every year I need a MRI with dye to control its growth and development. I now live in Ft. Lauderdale and need to find a DR that can continue my care including being capable and with a lot of experience wtih brain embolizations as a treatment and not pre operative. I am also open to anything new but do not want surgery. Can anyone help me to find the most qualified and experienced Dr in the USA. I need to find a DR in USA since I live her permanently now. Thank you for any help and suggestions.
Hi Linda, welcome to Connect and to the USA. You are wise to seek the best of the best for your care. Of course, I'm going to recommend Mayo Clinic. Mayo has 3 campuses: Jacksonville, Florida; Rochester, Minnesota and Phoenix, Arizona. On this webpage, http://mayocl.in/1mtmR63 you'll find the contact information for each of the locations. They will discuss your medical history with you and match you to a specialist suited to your situation. They can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan. I should also mention that the Mayo Brain Tumor Clinic offers appointments within 48 hours. If you need to be seen quickly, be sure to mention the Brain Tumor 48-access program.
Here you can read more about brain tumors and the Mayo Clinic experience through videos and patient stories http://mayocl.in/2gsOqel
I hope other members will also share their recommendations where they have received excellent care.
Linda, We look forward to getting to know more about you here in the Connect community. Do you find "watching and waiting" difficult? When was your last MRI?
ok so i am new to this group and i have a left frontal lobe that was discovered in 2014..........I have been to barrows and the doc there was just terrible.....Said some things he shouldn't have and insisted I get surgery....Well I can't do that and he seemed to think I wasn't a candidate for radiation, he didn't even want to pass it along to see if I could....well I made a 2nd opinion at mayo and yes i can have radiation! So I do have options...even thou they would like to have surgery too but I still have a choice! I was on WW and for 4 months and now found that it grew again so Dec 14 I am going back to see the radiologist what we can do to get started..........I live alone and have hardly any help as all the friends still work and I recently went back to work too....my question is how well did anyone tolerate the radiation? I guess the doc wants to do the 6 week low dose one...........Can I drive> Can I go to work? any ideas and suggestions and thoughts would be helpful....sooner than later
ok so i am new to this group and i have a left frontal lobe that was discovered in 2014..........I have been to barrows and the doc there was just terrible.....Said some things he shouldn't have and insisted I get surgery....Well I can't do that and he seemed to think I wasn't a candidate for radiation, he didn't even want to pass it along to see if I could....well I made a 2nd opinion at mayo and yes i can have radiation! So I do have options...even thou they would like to have surgery too but I still have a choice! I was on WW and for 4 months and now found that it grew again so Dec 14 I am going back to see the radiologist what we can do to get started..........I live alone and have hardly any help as all the friends still work and I recently went back to work too....my question is how well did anyone tolerate the radiation? I guess the doc wants to do the 6 week low dose one...........Can I drive> Can I go to work? any ideas and suggestions and thoughts would be helpful....sooner than later
Hello @carma. I just discovered your message. Please forgive the very tardy reply and that your questions went unanswered.
Have you since had radiation? How are you doing?
ok so i am new to this group and i have a left frontal lobe that was discovered in 2014..........I have been to barrows and the doc there was just terrible.....Said some things he shouldn't have and insisted I get surgery....Well I can't do that and he seemed to think I wasn't a candidate for radiation, he didn't even want to pass it along to see if I could....well I made a 2nd opinion at mayo and yes i can have radiation! So I do have options...even thou they would like to have surgery too but I still have a choice! I was on WW and for 4 months and now found that it grew again so Dec 14 I am going back to see the radiologist what we can do to get started..........I live alone and have hardly any help as all the friends still work and I recently went back to work too....my question is how well did anyone tolerate the radiation? I guess the doc wants to do the 6 week low dose one...........Can I drive> Can I go to work? any ideas and suggestions and thoughts would be helpful....sooner than later
Well I decided to call the radiation Dr at mayo..Dr Lyons...in AZ.....it cost me 35,000 out of pocket to do it there! Barrows was still nasty to me when I thought maybe I should try to get in there to save some cash but it was another long wait and was told that I may not be able to do any procedures and the wait was 2-6 weeks so that was putting me at mid march! A chance for it to grow larger....So I had the Linac machine done on me Jan 4.....Certainly much easier than going thru surgery without any help available.....I have been resting and will go back to work on Jan 31....Guess I didn't need that much time off but that's ok..........I am doing well, get a little notice of pressure in the L front lobe area but not like before.....most likely it is dying.........next MRI will be for April so for now that is it.........
ok so i am new to this group and i have a left frontal lobe that was discovered in 2014..........I have been to barrows and the doc there was just terrible.....Said some things he shouldn't have and insisted I get surgery....Well I can't do that and he seemed to think I wasn't a candidate for radiation, he didn't even want to pass it along to see if I could....well I made a 2nd opinion at mayo and yes i can have radiation! So I do have options...even thou they would like to have surgery too but I still have a choice! I was on WW and for 4 months and now found that it grew again so Dec 14 I am going back to see the radiologist what we can do to get started..........I live alone and have hardly any help as all the friends still work and I recently went back to work too....my question is how well did anyone tolerate the radiation? I guess the doc wants to do the 6 week low dose one...........Can I drive> Can I go to work? any ideas and suggestions and thoughts would be helpful....sooner than later
So good to hear from you, and with such good results.
If you have the energy while you heal, it would be helpful for others who may be on this journey to hear more details about your experience with the Linear Accelerator (LINAC). What would like to have known before you went for the procedure? What can people expect?
I also have multiple meningioma in the brain. I also have IIH, paplodima (sp?) And after having an LP shunt put a week later I had a major stroke. I was just wondering if one campus is better than another for handling this kind of combo. I have been going to Rochester for 2.5 years. I have 19 meningiomas left as 4 we're removed during the surgery for my stroke.
Six months ago I was told I have two benign meningiomas near my eyes. Vision in one eye is already almost gone (over a period of about six years). I was advised to have surgery to remove the tumors. I'm very worried that I may come out worse than when I went in. I don't know what to do.
Hello lovely Ladies,I feel like an investigative reporter. Thank god for Mayo Clinic having I can this wonderful connection where people can discuss this frustrating tumor and the many investigative methods we have all gone through. My name is Ellen and I can assure you that I am writing a book to help other patients deal with this tumor type such as we have!!! I have had two brain surgeries, have used the number one brain surgeons in Los Angeles and both times my so called meningioma was called, benign. Each time it has come back from two to five tumors; from grade1 to grade2. I have had radiation therapy (6wks) and told that I had an 85% chance that the tumor would shrink and would not come back. I am waiting for my results at the end of June. I am told the only way to save myself is with surgery. The last surgery I had affected my left side(hand) no feeling. This was from a stroke I had during surgery.I am lucky that this was the only effect from a a-typical benign meningioma having gone from grade 1 to 2. I have read every doctor study, called all universities, seen many neurologists and honestly getting contradictions which I am not at liberty to discuss. The only true facts I have discovered: This is based on a woman's hormones and apparently we are ingesting more hormones from our food. Also that woman who have had t hyroid cancer and used the incorrect radiation treatment following their cancer have our tumors. I am still investigating the source of these tumors. Please stay strong ladies, this disease is not for the weak. A big thank you to Mayo Clinic whom I will be having a consultation with soon. I have been searching for a site that brings meningioma patients together because we definitely have to fnd a way to get rid of this tumor, and believe me yearly brain surgery is not the answer to a quality life.
OK, you have me beat-ha! Mine are both left frontal lobe....sometimes I swear the area above my eyebrow under my skull hurts ( which is where they are) but then I think I MUST be imagining the cause/effect. I had a bad horse accident 32 years ago before MRI was available where I lived in Colorado, so had LOTS of head xrays...maybe one of the causes compounded with being a farmer in the days before we realized weed spray was POISON. My dad was a Doc in Iowa and had me go to Mayo from Colorado when the first tumor was found and Dr. O'Neil in Neurology there has been fantastic over the years by having me switch to totally organic food, no hormones for menopause and no soy in food products or any of the other things that act like estrogen including weed chemicals.to not "feed the tumors". He has had me watch and wait for I guess going on 12 years for the first one and it hasn't grown much. I DID end up at Mayo for highly malignant triple negative breast cancer about 4 years ago, and had a lumpectomy there and then continued with Chemo and radiation at home in Colorado. The new brain tumor showed up a year after my treatment for that ended....so back to scans more frequently to see how it acts. Funny that the neurological symptoms that correspond to growth in my brain tumors are similar to the ones I already experience due to my broken neck/bad fusions ( did NOT have that done at Mayo...darn, I let an idiot in CO do it) and I have constant headaches and neck pain from the pressure on my spinal cord at C3 level compressing the cord and right hand / arm weakness . I have been very grateful to my Mayo team for their conservative approaches. Funny that you say you have adapted your sleep position...I have had to also, and it is a tough change since we all have our favorite old ways, but then the pain makes us change! One thing I have found is that it is VERY beneficial to share with others that have serious health challenges, great to share info on what HAS worked with others 🙂 You sound like YOU have a great sense of humor to help you through all the challenges too!!!! Let us know how your scan goes, and my hopes are with you that you don't need to do more surgery yet!!
Hi , how exciting, this is the first cause I have heard of affecting the growth of meningioma tumors. Harvard University, Neurosurgeon, Elizabeth Klass mentioned this in her study. I spoke with Dr. Klass regarding this. What other foods were you told not to eat? Thank you,Ellen
Six months ago I was told I have two benign meningiomas near my eyes. Vision in one eye is already almost gone (over a period of about six years). I was advised to have surgery to remove the tumors. I'm very worried that I may come out worse than when I went in. I don't know what to do.
Thank you so much for this information. I am looking for any study. Best of luck to you. Ellen that can keep my tumors away. Surgery is not the answer. I have had two surgeries
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Hi Linda, welcome to Connect and to the USA. You are wise to seek the best of the best for your care. Of course, I'm going to recommend Mayo Clinic. Mayo has 3 campuses: Jacksonville, Florida; Rochester, Minnesota and Phoenix, Arizona. On this webpage, http://mayocl.in/1mtmR63 you'll find the contact information for each of the locations. They will discuss your medical history with you and match you to a specialist suited to your situation. They can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan. I should also mention that the Mayo Brain Tumor Clinic offers appointments within 48 hours. If you need to be seen quickly, be sure to mention the Brain Tumor 48-access program.
Here you can read more about brain tumors and the Mayo Clinic experience through videos and patient stories http://mayocl.in/2gsOqel
I hope other members will also share their recommendations where they have received excellent care.
Linda, We look forward to getting to know more about you here in the Connect community. Do you find "watching and waiting" difficult? When was your last MRI?
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1 Reactionok so i am new to this group and i have a left frontal lobe that was discovered in 2014..........I have been to barrows and the doc there was just terrible.....Said some things he shouldn't have and insisted I get surgery....Well I can't do that and he seemed to think I wasn't a candidate for radiation, he didn't even want to pass it along to see if I could....well I made a 2nd opinion at mayo and yes i can have radiation! So I do have options...even thou they would like to have surgery too but I still have a choice! I was on WW and for 4 months and now found that it grew again so Dec 14 I am going back to see the radiologist what we can do to get started..........I live alone and have hardly any help as all the friends still work and I recently went back to work too....my question is how well did anyone tolerate the radiation? I guess the doc wants to do the 6 week low dose one...........Can I drive> Can I go to work? any ideas and suggestions and thoughts would be helpful....sooner than later
-
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Helpful -
Hug
1 ReactionHello @carma. I just discovered your message. Please forgive the very tardy reply and that your questions went unanswered.
Have you since had radiation? How are you doing?
Well I decided to call the radiation Dr at mayo..Dr Lyons...in AZ.....it cost me 35,000 out of pocket to do it there! Barrows was still nasty to me when I thought maybe I should try to get in there to save some cash but it was another long wait and was told that I may not be able to do any procedures and the wait was 2-6 weeks so that was putting me at mid march! A chance for it to grow larger....So I had the Linac machine done on me Jan 4.....Certainly much easier than going thru surgery without any help available.....I have been resting and will go back to work on Jan 31....Guess I didn't need that much time off but that's ok..........I am doing well, get a little notice of pressure in the L front lobe area but not like before.....most likely it is dying.........next MRI will be for April so for now that is it.........
-
Like -
Helpful -
Hug
2 ReactionsSo good to hear from you, and with such good results.
If you have the energy while you heal, it would be helpful for others who may be on this journey to hear more details about your experience with the Linear Accelerator (LINAC). What would like to have known before you went for the procedure? What can people expect?
I also have multiple meningioma in the brain. I also have IIH, paplodima (sp?) And after having an LP shunt put a week later I had a major stroke. I was just wondering if one campus is better than another for handling this kind of combo. I have been going to Rochester for 2.5 years. I have 19 meningiomas left as 4 we're removed during the surgery for my stroke.
Hello lovely Ladies,I feel like an investigative reporter. Thank god for Mayo Clinic having I can this wonderful connection where people can discuss this frustrating tumor and the many investigative methods we have all gone through. My name is Ellen and I can assure you that I am writing a book to help other patients deal with this tumor type such as we have!!! I have had two brain surgeries, have used the number one brain surgeons in Los Angeles and both times my so called meningioma was called, benign. Each time it has come back from two to five tumors; from grade1 to grade2. I have had radiation therapy (6wks) and told that I had an 85% chance that the tumor would shrink and would not come back. I am waiting for my results at the end of June. I am told the only way to save myself is with surgery. The last surgery I had affected my left side(hand) no feeling. This was from a stroke I had during surgery.I am lucky that this was the only effect from a a-typical benign meningioma having gone from grade 1 to 2. I have read every doctor study, called all universities, seen many neurologists and honestly getting contradictions which I am not at liberty to discuss. The only true facts I have discovered: This is based on a woman's hormones and apparently we are ingesting more hormones from our food. Also that woman who have had t hyroid cancer and used the incorrect radiation treatment following their cancer have our tumors. I am still investigating the source of these tumors. Please stay strong ladies, this disease is not for the weak. A big thank you to Mayo Clinic whom I will be having a consultation with soon. I have been searching for a site that brings meningioma patients together because we definitely have to fnd a way to get rid of this tumor, and believe me yearly brain surgery is not the answer to a quality life.
-
Like -
Helpful -
Hug
4 ReactionsHi , how exciting, this is the first cause I have heard of affecting the growth of meningioma tumors. Harvard University, Neurosurgeon, Elizabeth Klass mentioned this in her study. I spoke with Dr. Klass regarding this. What other foods were you told not to eat? Thank you,Ellen
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Like -
Helpful -
Hug
1 ReactionThank you so much for this information. I am looking for any study. Best of luck to you. Ellen that can keep my tumors away. Surgery is not the answer. I have had two surgeries
Meningiomas. How can we prevent recurring in the brain. How can they be treated in the brain stem?