Yes, I am. I had a large one removed from the left side of my head in 2009 and had annual MRIs done for the following five years. During one of these MRIs another one was found in the frontal lobe area on the top of my head. There are still tentacles that were left from the surgery because they could not get them. My neurosurgeon has released me but said if the latest one starts to grow it can be removed by laser. My neuropsychologist will be following me going forward. I developed mild cognitive impairment from the first meningioma which has left me without the ability to organize, follow thought processes, and loss of short and long term memory.
I have a tumor pushing up against my brain stem, not sure if that is the same thing, but my doctor felt surgery would be too dangerous so I had Cyberknife Radiation. Could that be an option for you? Sending strength and a huge Montana hug. love,peg
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.
I have had radiation as a child when they didn't know how dangerous it was. I have had surgery for a golf ball size meningioma. They couldn't remove all of it because it was in a dangerous spot. Don't know when I developed another small one. Even tho I had a MRI every year no one ever mentioned another one. It is starting to grow and they recommended the Gamma Knife. I am going to see what Mayo in Rochester has to say. I would like them to do the procedure.I also had thyroid cancer 20 years ago. Worked in a hotel and had a group of researcher from all over the world who were studying meningioma and the connection of thyroid cancer and the tumors. I joined their study group and gave my DNA.
I have had radiation as a child when they didn't know how dangerous it was. I have had surgery for a golf ball size meningioma. They couldn't remove all of it because it was in a dangerous spot. Don't know when I developed another small one. Even tho I had a MRI every year no one ever mentioned another one. It is starting to grow and they recommended the Gamma Knife. I am going to see what Mayo in Rochester has to say. I would like them to do the procedure.I also had thyroid cancer 20 years ago. Worked in a hotel and had a group of researcher from all over the world who were studying meningioma and the connection of thyroid cancer and the tumors. I joined their study group and gave my DNA.
I went to Mayo and had a wonderful Dr Ruff . He told me that I didn't need the Gamma knife.He felt that it was not aggresive like they told me here. He explained this tumor was slow growing. I will have a MRI every year to watch it. Complete opposite from what they told me. Go to Mayo and get a second opinion.
Well, this is just silly. I'm commenting on my own question from 7 yrs. ago. I am doing reasonably well, and as I often say am "mostly normal". I am wondering how everyone else is doing from that time frame. I still have the 4 tumors left, and am still holding off on further surgeries. It seems so risky at this point and worry that 3 might not be my lucky number. I have also been diagnosed with 5 hemangiomas on my spine, yay me. Life can definitely be challenging but it's also wonderful. All my love to all of you. peg
Well, this is just silly. I'm commenting on my own question from 7 yrs. ago. I am doing reasonably well, and as I often say am "mostly normal". I am wondering how everyone else is doing from that time frame. I still have the 4 tumors left, and am still holding off on further surgeries. It seems so risky at this point and worry that 3 might not be my lucky number. I have also been diagnosed with 5 hemangiomas on my spine, yay me. Life can definitely be challenging but it's also wonderful. All my love to all of you. peg
Peg, I'm clinging to your statement that are doing reasonably well and are able to often say "mostly normal." What treatment options are being considered for the 5 hemangiomas on the spine?
Hi guys, Great idea to get updates on all of us from years ago!!! I just did my MRI's after waiting 2 years from the last one. No new growth since then. One of mine has grown a small amount over the past several years, and funny but it was my first one that had remained stable for over 10 years. The 2nd one that had popped up after all my Breast Cancer surgery, radiation and chemo showed up the first time at the same size as my old one and then really didn't grow after that first year. My BC was NOT related to my Meningiomas....opposite actually as a triple negative instead of the expected estrogen fed brain ones. Hope most on "watch and wait" are still able to avoid surgery as I am!!!!!!
Peg, I'm clinging to your statement that are doing reasonably well and are able to often say "mostly normal." What treatment options are being considered for the 5 hemangiomas on the spine?
Colleen, it's so wonderful to see you are still here with us. I always appreciated your encouragement and positivity, especially when we're all feeling pretty dicey and not sure what to do. In regard to the hemangiomas, doc is doing nothing. I have lots of back and neck issues but not sure if it the hemangiomas or not. I am really excited to see how everyone is doing and as always hoping for the best. much love,peg
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Welcome to Connect @dfeins,
I’d like to introduce you to @pharmamom @kweber @rose4622 @hopeful33250 @rachelanne, who’ve written about vertigo in these discussions:
– Anyone else diagnosed with acoustic neuroma, a benign brain tumor? https://connect.mayoclinic.org/discussion/my-name-is-tracy-daley-i-live-in-omaha-nebraska-my-diagnosis/
– Cerebellar Stroke - experience/treatment/recovery https://connect.mayoclinic.org/discussion/cerebellar-stroke-experiencetreatmentrecovery/
Here’s a conversation, specifically about vertigo that might also interest you:
– https://connect.mayoclinic.org/discussion/vertigo-287879/
@dfeins, when did you have the tumor excision? May I ask what treatments you’ve tried to control the vertigo?
I have a benign meningioma pushing on my spinal cord that I have to have surgery on. Anyone have this surgery?
I have a tumor pushing up against my brain stem, not sure if that is the same thing, but my doctor felt surgery would be too dangerous so I had Cyberknife Radiation. Could that be an option for you? Sending strength and a huge Montana hug. love,peg
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2 ReactionsI have had radiation as a child when they didn't know how dangerous it was. I have had surgery for a golf ball size meningioma. They couldn't remove all of it because it was in a dangerous spot. Don't know when I developed another small one. Even tho I had a MRI every year no one ever mentioned another one. It is starting to grow and they recommended the Gamma Knife. I am going to see what Mayo in Rochester has to say. I would like them to do the procedure.I also had thyroid cancer 20 years ago. Worked in a hotel and had a group of researcher from all over the world who were studying meningioma and the connection of thyroid cancer and the tumors. I joined their study group and gave my DNA.
Hi @nancirae, Did you get a second opinion from Mayo Clinic? Do you plan to get gamma knife treatment?
I went to Mayo and had a wonderful Dr Ruff . He told me that I didn't need the Gamma knife.He felt that it was not aggresive like they told me here. He explained this tumor was slow growing. I will have a MRI every year to watch it. Complete opposite from what they told me. Go to Mayo and get a second opinion.
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1 ReactionWell, this is just silly. I'm commenting on my own question from 7 yrs. ago. I am doing reasonably well, and as I often say am "mostly normal". I am wondering how everyone else is doing from that time frame. I still have the 4 tumors left, and am still holding off on further surgeries. It seems so risky at this point and worry that 3 might not be my lucky number. I have also been diagnosed with 5 hemangiomas on my spine, yay me. Life can definitely be challenging but it's also wonderful. All my love to all of you. peg
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3 Reactions@pegorr!!! Not silly at all. I'm so glad to get an update from you. I'm confident that your post will reanimate this discussion and we'll get updates from other members new and old like @nancirae @lindajean @barbarabx @kareniowa @lindalb @pennie @elewis @nancye3 @cnesselroad @peej @wegotthis @bomashisha @pennie @morock77 @junebug222 @rose4622 @cindyt63 and others.
Peg, I'm clinging to your statement that are doing reasonably well and are able to often say "mostly normal." What treatment options are being considered for the 5 hemangiomas on the spine?
Hi guys, Great idea to get updates on all of us from years ago!!! I just did my MRI's after waiting 2 years from the last one. No new growth since then. One of mine has grown a small amount over the past several years, and funny but it was my first one that had remained stable for over 10 years. The 2nd one that had popped up after all my Breast Cancer surgery, radiation and chemo showed up the first time at the same size as my old one and then really didn't grow after that first year. My BC was NOT related to my Meningiomas....opposite actually as a triple negative instead of the expected estrogen fed brain ones. Hope most on "watch and wait" are still able to avoid surgery as I am!!!!!!
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4 ReactionsColleen, it's so wonderful to see you are still here with us. I always appreciated your encouragement and positivity, especially when we're all feeling pretty dicey and not sure what to do. In regard to the hemangiomas, doc is doing nothing. I have lots of back and neck issues but not sure if it the hemangiomas or not. I am really excited to see how everyone is doing and as always hoping for the best. much love,peg
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