Sister has severe head pain 3 years post Meningioma surgery

Posted by 4catmom @4catmom, Oct 31, 2016

Has anyone experienced head pain this long? All doctors throw pain pills at her without any relief. She’s suffering and has no life. Any suggestions? I’ll take her to a Mayo clinic. Not sure which one is best.

@lindajean

I’ve been treated at Mayo for over 10 years now after having a horrible surgeon elsewhere do a botched neck fusion which led to MRI’s that diagnosed a single meningioma ( I now have a second we watch at Mayo too). My Dad, who is a retired Doc went with me to ALL those appointments over several years. 4 years ago I was diagnosed with nasty triple negative breast cancer and.back to Mayo I went, this time due to my Dads age, my 2 daughters met up with me at Mayo and went to EVERY doctor appt. and test along with surgery and recovery. They were welcomed with OPEN arms by all, and the Docs answered every question they came up with in SUCH a detailed but clear to understand way and my Mayo team was beyond kind, warm and compassionate. It was so reassuring to have “extra ears” during all my appointments as it gets to be overwhelming to the patient, and my family could “fill in the blanks” of the things I had missed. I too live with chronic pain and the Mayo Pain Clinic is AMAZING…… The thing I would encourage you to do is look into a new heath insurance for her that would pay at Mayo ( like a PPO plan with Mayo as an In Network provider). Now that we have Obamacare, even those of us that were “uninsurable” can get a new insurance plan during the enrollment period. NO question that Mayo’s team approach can help with a complex situation including the depression that can come from the all too common emotional issues that chronic illness causes because of the stress for caregivers and spouses too. BEST of LUCK….I am HAPPY and am living a FULL life, even though I can’t change my conditions only control and manage them and your sister can be too with the hope a great medical team can give for relief from much of the suffering!!!

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Thank you so much! I want to get her to Mayo. Thanks for mentioning about the airline number. She doesn’t want to be on pain pills but this is all they give her. I’m sorry about your friend getting hooked on pain pills. I just don’t understand why these places only push pills when there are alternatives!

Thanks again for your help!

Great information! Thanks so, so much! So glad I found Mayo Clinic connect! Everyone has been wonderful.

@lindajean

I’ve been treated at Mayo for over 10 years now after having a horrible surgeon elsewhere do a botched neck fusion which led to MRI’s that diagnosed a single meningioma ( I now have a second we watch at Mayo too). My Dad, who is a retired Doc went with me to ALL those appointments over several years. 4 years ago I was diagnosed with nasty triple negative breast cancer and.back to Mayo I went, this time due to my Dads age, my 2 daughters met up with me at Mayo and went to EVERY doctor appt. and test along with surgery and recovery. They were welcomed with OPEN arms by all, and the Docs answered every question they came up with in SUCH a detailed but clear to understand way and my Mayo team was beyond kind, warm and compassionate. It was so reassuring to have “extra ears” during all my appointments as it gets to be overwhelming to the patient, and my family could “fill in the blanks” of the things I had missed. I too live with chronic pain and the Mayo Pain Clinic is AMAZING…… The thing I would encourage you to do is look into a new heath insurance for her that would pay at Mayo ( like a PPO plan with Mayo as an In Network provider). Now that we have Obamacare, even those of us that were “uninsurable” can get a new insurance plan during the enrollment period. NO question that Mayo’s team approach can help with a complex situation including the depression that can come from the all too common emotional issues that chronic illness causes because of the stress for caregivers and spouses too. BEST of LUCK….I am HAPPY and am living a FULL life, even though I can’t change my conditions only control and manage them and your sister can be too with the hope a great medical team can give for relief from much of the suffering!!!

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My pleasure! BEST of luck 🙂

@lindajean

I’ve been treated at Mayo for over 10 years now after having a horrible surgeon elsewhere do a botched neck fusion which led to MRI’s that diagnosed a single meningioma ( I now have a second we watch at Mayo too). My Dad, who is a retired Doc went with me to ALL those appointments over several years. 4 years ago I was diagnosed with nasty triple negative breast cancer and.back to Mayo I went, this time due to my Dads age, my 2 daughters met up with me at Mayo and went to EVERY doctor appt. and test along with surgery and recovery. They were welcomed with OPEN arms by all, and the Docs answered every question they came up with in SUCH a detailed but clear to understand way and my Mayo team was beyond kind, warm and compassionate. It was so reassuring to have “extra ears” during all my appointments as it gets to be overwhelming to the patient, and my family could “fill in the blanks” of the things I had missed. I too live with chronic pain and the Mayo Pain Clinic is AMAZING…… The thing I would encourage you to do is look into a new heath insurance for her that would pay at Mayo ( like a PPO plan with Mayo as an In Network provider). Now that we have Obamacare, even those of us that were “uninsurable” can get a new insurance plan during the enrollment period. NO question that Mayo’s team approach can help with a complex situation including the depression that can come from the all too common emotional issues that chronic illness causes because of the stress for caregivers and spouses too. BEST of LUCK….I am HAPPY and am living a FULL life, even though I can’t change my conditions only control and manage them and your sister can be too with the hope a great medical team can give for relief from much of the suffering!!!

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@4catmom here is the link to the Mayo Clinic concierge travel services that Linda refers to http://mayocl.in/21nM5T6 You’ll see Mayo Clinic offers free concierge services to all patients.

@lindajean

I’ve been treated at Mayo for over 10 years now after having a horrible surgeon elsewhere do a botched neck fusion which led to MRI’s that diagnosed a single meningioma ( I now have a second we watch at Mayo too). My Dad, who is a retired Doc went with me to ALL those appointments over several years. 4 years ago I was diagnosed with nasty triple negative breast cancer and.back to Mayo I went, this time due to my Dads age, my 2 daughters met up with me at Mayo and went to EVERY doctor appt. and test along with surgery and recovery. They were welcomed with OPEN arms by all, and the Docs answered every question they came up with in SUCH a detailed but clear to understand way and my Mayo team was beyond kind, warm and compassionate. It was so reassuring to have “extra ears” during all my appointments as it gets to be overwhelming to the patient, and my family could “fill in the blanks” of the things I had missed. I too live with chronic pain and the Mayo Pain Clinic is AMAZING…… The thing I would encourage you to do is look into a new heath insurance for her that would pay at Mayo ( like a PPO plan with Mayo as an In Network provider). Now that we have Obamacare, even those of us that were “uninsurable” can get a new insurance plan during the enrollment period. NO question that Mayo’s team approach can help with a complex situation including the depression that can come from the all too common emotional issues that chronic illness causes because of the stress for caregivers and spouses too. BEST of LUCK….I am HAPPY and am living a FULL life, even though I can’t change my conditions only control and manage them and your sister can be too with the hope a great medical team can give for relief from much of the suffering!!!

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Wonderful! Thanks so much. Now I have to figure out finances!

My husband had surgery in July to remove what we thought to be a shwanoma tumor but turned out to be a Type 2 Meningioma. The surgery was done at St Vincents hospital in Los Angeles by Dr Schwarts and his team. The surgery took 10 hours. The tumor was described as “sticky’ and attached to several nerves leaving him with some nerve damage and paralysis in his throat and one vocal cord. He could not swallow and had to have a PEG tube surgically placed in his stomach. They were unable to remove all of the tumor and left a small piece on his brain stem. Type 2 meningiomas are benign but they do continue to grow and can infiltrate into other tissue. For that reason we are now at Mayo in Rochester,MN for fractionated radiation treatments. He has seven treatments so far. He has started to feel very fatigued and increasingly dizzy. He becomes very anxious at times and is worried about cognitive impairment. Has anyone else experienced a type 2 meningioma and could shed some light on what to expect?

@kimf

My husband had surgery in July to remove what we thought to be a shwanoma tumor but turned out to be a Type 2 Meningioma. The surgery was done at St Vincents hospital in Los Angeles by Dr Schwarts and his team. The surgery took 10 hours. The tumor was described as “sticky’ and attached to several nerves leaving him with some nerve damage and paralysis in his throat and one vocal cord. He could not swallow and had to have a PEG tube surgically placed in his stomach. They were unable to remove all of the tumor and left a small piece on his brain stem. Type 2 meningiomas are benign but they do continue to grow and can infiltrate into other tissue. For that reason we are now at Mayo in Rochester,MN for fractionated radiation treatments. He has seven treatments so far. He has started to feel very fatigued and increasingly dizzy. He becomes very anxious at times and is worried about cognitive impairment. Has anyone else experienced a type 2 meningioma and could shed some light on what to expect?

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Hello kimf, and welcome to Connect. Thank you for taking the time to share you and your husband’s experiences with meningioma. I moved your discussion post in to an existing discussion that is taking place on post meningioma surgery. Although some of the other members discussing in this conversation have experienced other symptoms, some may be able to talk about their experiences post-surgery and may be able to provide insight on some of your questions.

I would like you to meet @4catmom whose sister has had meningioma surgery and @lindajean who has had meningioma surgery, along with @pegorr who has had both surgery and radiation. They may be able to answer your questions about the dizziness and fatigue after the meningioma surgery, as well as the worry about cognitive impairment.

@kimf, have you or your husband discussed these concerns and symptoms with your physician?

@kimf

My husband had surgery in July to remove what we thought to be a shwanoma tumor but turned out to be a Type 2 Meningioma. The surgery was done at St Vincents hospital in Los Angeles by Dr Schwarts and his team. The surgery took 10 hours. The tumor was described as “sticky’ and attached to several nerves leaving him with some nerve damage and paralysis in his throat and one vocal cord. He could not swallow and had to have a PEG tube surgically placed in his stomach. They were unable to remove all of the tumor and left a small piece on his brain stem. Type 2 meningiomas are benign but they do continue to grow and can infiltrate into other tissue. For that reason we are now at Mayo in Rochester,MN for fractionated radiation treatments. He has seven treatments so far. He has started to feel very fatigued and increasingly dizzy. He becomes very anxious at times and is worried about cognitive impairment. Has anyone else experienced a type 2 meningioma and could shed some light on what to expect?

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I just joined mayo connect right now, I also had a meningioma removed on apr. 29 2015, it was the size of a ping pong ball. The neurosurgeon left/overlooked a small piece about 7mm in size. After removal it was exsmined and it was a type2 meningioma. The same neurosurgeon refused to operate on small tumor because it was behind my right eye, next to my optic nerve and recommended radiation. I had cyberknife on jan 2016. Now I have consulted a neurosurgeon in MD Anderson but he said to wait and see if the cyberknife treatment stops growth of tumor. I am here looking for answers/help in managing my grade2 meningioma or any body that has used alternative treatments or natural supplements that stop growth of meningiomas

@kimf

My husband had surgery in July to remove what we thought to be a shwanoma tumor but turned out to be a Type 2 Meningioma. The surgery was done at St Vincents hospital in Los Angeles by Dr Schwarts and his team. The surgery took 10 hours. The tumor was described as “sticky’ and attached to several nerves leaving him with some nerve damage and paralysis in his throat and one vocal cord. He could not swallow and had to have a PEG tube surgically placed in his stomach. They were unable to remove all of the tumor and left a small piece on his brain stem. Type 2 meningiomas are benign but they do continue to grow and can infiltrate into other tissue. For that reason we are now at Mayo in Rochester,MN for fractionated radiation treatments. He has seven treatments so far. He has started to feel very fatigued and increasingly dizzy. He becomes very anxious at times and is worried about cognitive impairment. Has anyone else experienced a type 2 meningioma and could shed some light on what to expect?

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I have also had cyberknife radiation on tumor laying on my optic nerve and it has stopped the growth, and I still have relatively good eyesight. I am getting cyberknife on one now on the left side, and I’m sure it will be stopped as well. I haven’t heard of alternative treatments or supplements. I do know it’s difficult knowing there is something up there, but not to have personal control over it. My neuro is conservative in his treatments, although I have had 2 craniotomies. I believe their main concern is our quality of life, and I’m hoping you are doing well and able to enjoy each day to the fullest. peg

@kimf

My husband had surgery in July to remove what we thought to be a shwanoma tumor but turned out to be a Type 2 Meningioma. The surgery was done at St Vincents hospital in Los Angeles by Dr Schwarts and his team. The surgery took 10 hours. The tumor was described as “sticky’ and attached to several nerves leaving him with some nerve damage and paralysis in his throat and one vocal cord. He could not swallow and had to have a PEG tube surgically placed in his stomach. They were unable to remove all of the tumor and left a small piece on his brain stem. Type 2 meningiomas are benign but they do continue to grow and can infiltrate into other tissue. For that reason we are now at Mayo in Rochester,MN for fractionated radiation treatments. He has seven treatments so far. He has started to feel very fatigued and increasingly dizzy. He becomes very anxious at times and is worried about cognitive impairment. Has anyone else experienced a type 2 meningioma and could shed some light on what to expect?

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my neurosurgeon at MD Anderson says he can operate/remove small tumor but he says that he thinks is better to wait and see if the cyberknife would stop its growth. he told me he would approach/reach tumor from the side of my eye and he doesn’t need to do
craneotomy. i still feel pressure but overall my eyesight is 20/20 and i have some inflamation on my right eye, i am ok. thanks for responding

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