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.

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Welcome to Connect @4catmom.
If you’d like to get a second opinion from experts at the Mayo Clinic, please call any of our 3 campuses, http://mayocl.in/1mtmR63. You will be offered an appointment within 48 hours. Be sure to mention the Brain Tumor 48-access program. They can help you and your sister navigate the healthcare journey, answer your questions and guide you through a treatment plan.

In the meantime, I’d like to introduce you to fellow Connect members who may be able to share their experiences with you about pain post surgery. Please meet @lindajean @pegorr @eleanor1931seminara1931 @user_che69bc66 @rareeby @55soon and @debb2010.

@4catmom, what state does your sister live in? You obviously care deeply for her. Are you lucky enough to live near her too?

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@colleenyoung

Welcome to Connect @4catmom.
If you’d like to get a second opinion from experts at the Mayo Clinic, please call any of our 3 campuses, http://mayocl.in/1mtmR63. You will be offered an appointment within 48 hours. Be sure to mention the Brain Tumor 48-access program. They can help you and your sister navigate the healthcare journey, answer your questions and guide you through a treatment plan.

In the meantime, I’d like to introduce you to fellow Connect members who may be able to share their experiences with you about pain post surgery. Please meet @lindajean @pegorr @eleanor1931seminara1931 @user_che69bc66 @rareeby @55soon and @debb2010.

@4catmom, what state does your sister live in? You obviously care deeply for her. Are you lucky enough to live near her too?

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We both live in Florida about 1 and 1/2 hours from each other. Her husband is tired of being her caregiver. Even mentioned divorce. She also hasn’t been able to eat properly since surgery. Her tongue swells and burns. Oral surgeons just tell her they don’t see anything and do nothing for her. She had bleeding ulcers this year. Recently her white cell count was elevated. She’s very ill and her doctors do nothing to help her. I’m extremely concerned for her and just want her to live again.

REPLY
@colleenyoung

Welcome to Connect @4catmom.
If you’d like to get a second opinion from experts at the Mayo Clinic, please call any of our 3 campuses, http://mayocl.in/1mtmR63. You will be offered an appointment within 48 hours. Be sure to mention the Brain Tumor 48-access program. They can help you and your sister navigate the healthcare journey, answer your questions and guide you through a treatment plan.

In the meantime, I’d like to introduce you to fellow Connect members who may be able to share their experiences with you about pain post surgery. Please meet @lindajean @pegorr @eleanor1931seminara1931 @user_che69bc66 @rareeby @55soon and @debb2010.

@4catmom, what state does your sister live in? You obviously care deeply for her. Are you lucky enough to live near her too?

Jump to this post

My heart goes out to you and your sister. I’m glad you are relatively close in geography, although I’m sure 90 minutes seems very far away when you want to be by her side.

I hope you will consider calling Mayo Clinic for a second opinion, and where you can seek a team approach to care, including oral surgeons. I’m also going to bring @IndianaScott into this conversation. He can share about his experience at Mayo Clinic and caring for his wife who had a brain tumor.

REPLY
@colleenyoung

Welcome to Connect @4catmom.
If you’d like to get a second opinion from experts at the Mayo Clinic, please call any of our 3 campuses, http://mayocl.in/1mtmR63. You will be offered an appointment within 48 hours. Be sure to mention the Brain Tumor 48-access program. They can help you and your sister navigate the healthcare journey, answer your questions and guide you through a treatment plan.

In the meantime, I’d like to introduce you to fellow Connect members who may be able to share their experiences with you about pain post surgery. Please meet @lindajean @pegorr @eleanor1931seminara1931 @user_che69bc66 @rareeby @55soon and @debb2010.

@4catmom, what state does your sister live in? You obviously care deeply for her. Are you lucky enough to live near her too?

Jump to this post

Just for the record — I have not had surgery and may never need to.  However, I have confidence in Mayo's and it would be useful to ask for a second opinion.  My neurosurgeon and GP recommended cutting back on the annual MRIs, with and without contrast dye. First my GP recommended and MRI every 18 months, and recently the neurosurgeon recommended every other year.  I suggested as a compromise, an annual MRI without contrast, and an every other year MRI with contrast, in addition to the MRI without contrast.  My tumor is so small that MRI specialists need to know where to look before they can find it, and even then, some cannot.  My neurosurgeon said that some of his patients have had their benign tumors removed in order to avoid the annual MRIs, and to live without the anxiety.  Given the notes here, I am going to continue with the MRIs, and try to avoid anxiety every time I get a headache.    

REPLY
@colleenyoung

Welcome to Connect @4catmom.
If you’d like to get a second opinion from experts at the Mayo Clinic, please call any of our 3 campuses, http://mayocl.in/1mtmR63. You will be offered an appointment within 48 hours. Be sure to mention the Brain Tumor 48-access program. They can help you and your sister navigate the healthcare journey, answer your questions and guide you through a treatment plan.

In the meantime, I’d like to introduce you to fellow Connect members who may be able to share their experiences with you about pain post surgery. Please meet @lindajean @pegorr @eleanor1931seminara1931 @user_che69bc66 @rareeby @55soon and @debb2010.

@4catmom, what state does your sister live in? You obviously care deeply for her. Are you lucky enough to live near her too?

Jump to this post

Hello @4catmom I send you peace and strength!

I am Scott and I was my wife’s primary caregiver during her 14+ year battle with brain cancer. I cannot endorse Mayo highly enough. Until she entered hospice, it was the only place the doctors actually put her in the center of her own care. It made a huge difference in her care and in her quality of life. They see the peculiar all the time! The unusual is usual to them. They may be able to help your sister.

My wife battled levels of pain for her entire journey, which could only be managed with a peculiar ‘cocktail’ of medications, but I am sure that this varies from person to person. Caregiving is a challenging journey.

Stay in touch and I will hope you can find some help!

REPLY
@colleenyoung

Welcome to Connect @4catmom.
If you’d like to get a second opinion from experts at the Mayo Clinic, please call any of our 3 campuses, http://mayocl.in/1mtmR63. You will be offered an appointment within 48 hours. Be sure to mention the Brain Tumor 48-access program. They can help you and your sister navigate the healthcare journey, answer your questions and guide you through a treatment plan.

In the meantime, I’d like to introduce you to fellow Connect members who may be able to share their experiences with you about pain post surgery. Please meet @lindajean @pegorr @eleanor1931seminara1931 @user_che69bc66 @rareeby @55soon and @debb2010.

@4catmom, what state does your sister live in? You obviously care deeply for her. Are you lucky enough to live near her too?

Jump to this post

Thankyou so much! I will try to convince her that Mayo can help. She never wants to leave her house because she feels so ill. I will work on her and thanks for your kind words. So sorry your wife suffered but she had you to help her and that means a lot.

REPLY
@colleenyoung

Welcome to Connect @4catmom.
If you’d like to get a second opinion from experts at the Mayo Clinic, please call any of our 3 campuses, http://mayocl.in/1mtmR63. You will be offered an appointment within 48 hours. Be sure to mention the Brain Tumor 48-access program. They can help you and your sister navigate the healthcare journey, answer your questions and guide you through a treatment plan.

In the meantime, I’d like to introduce you to fellow Connect members who may be able to share their experiences with you about pain post surgery. Please meet @lindajean @pegorr @eleanor1931seminara1931 @user_che69bc66 @rareeby @55soon and @debb2010.

@4catmom, what state does your sister live in? You obviously care deeply for her. Are you lucky enough to live near her too?

Jump to this post

Thankyou for this information. I so wish my sister had her meningioma removed by a specialist in meningiomas. She suffers everyday in pain. She has a 2nd meningioma that’s on wait and watch. I don’t trust her doctors. No one has given her relief.

REPLY
@colleenyoung

Welcome to Connect @4catmom.
If you’d like to get a second opinion from experts at the Mayo Clinic, please call any of our 3 campuses, http://mayocl.in/1mtmR63. You will be offered an appointment within 48 hours. Be sure to mention the Brain Tumor 48-access program. They can help you and your sister navigate the healthcare journey, answer your questions and guide you through a treatment plan.

In the meantime, I’d like to introduce you to fellow Connect members who may be able to share their experiences with you about pain post surgery. Please meet @lindajean @pegorr @eleanor1931seminara1931 @user_che69bc66 @rareeby @55soon and @debb2010.

@4catmom, what state does your sister live in? You obviously care deeply for her. Are you lucky enough to live near her too?

Jump to this post

I will try to get my sister to the Jacksonville Mayo clinic. She’s not in a financial position to private pay and I can only provide a little financial help. She has an HMO which is being cancelled as of January 1 and they may not be able to afford new health insurance. Her husband is no help at all. He even suggested divorce as he’s over helping her. It’s just a bad situation all around so I’m trying to do what I can to help.

REPLY
@colleenyoung

Welcome to Connect @4catmom.
If you’d like to get a second opinion from experts at the Mayo Clinic, please call any of our 3 campuses, http://mayocl.in/1mtmR63. You will be offered an appointment within 48 hours. Be sure to mention the Brain Tumor 48-access program. They can help you and your sister navigate the healthcare journey, answer your questions and guide you through a treatment plan.

In the meantime, I’d like to introduce you to fellow Connect members who may be able to share their experiences with you about pain post surgery. Please meet @lindajean @pegorr @eleanor1931seminara1931 @user_che69bc66 @rareeby @55soon and @debb2010.

@4catmom, what state does your sister live in? You obviously care deeply for her. Are you lucky enough to live near her too?

Jump to this post

Sending you and your sister strength and hope as well. I am battling meningiomas , and have had 2 surgeries and radiation. I have had pain and feelings of discomfort from pressure but not the debilitating pain your sister is experiencing. I am so grateful for places like the Mayo and it was really exciting to hear Scott say,”The unusual is the usual to them”. Since we are all individuals, we certainly can’t all come out exactly the same from our surgery experiences. I’m hoping they can come up with the right “cocktail” for her. Let her know, we’re with her, it’s all for one and one for all, #braintumorwarriors, Huge Montana hug, peg

REPLY
@colleenyoung

Welcome to Connect @4catmom.
If you’d like to get a second opinion from experts at the Mayo Clinic, please call any of our 3 campuses, http://mayocl.in/1mtmR63. You will be offered an appointment within 48 hours. Be sure to mention the Brain Tumor 48-access program. They can help you and your sister navigate the healthcare journey, answer your questions and guide you through a treatment plan.

In the meantime, I’d like to introduce you to fellow Connect members who may be able to share their experiences with you about pain post surgery. Please meet @lindajean @pegorr @eleanor1931seminara1931 @user_che69bc66 @rareeby @55soon and @debb2010.

@4catmom, what state does your sister live in? You obviously care deeply for her. Are you lucky enough to live near her too?

Jump to this post

Thanks so much for your support. It means a lot. My sister’s doctors hate when you make treatment suggestions or if she brings someone to her appointment. They actually get mad. I say too bad. That’s why we’re considering Mayo. Thanks again.

REPLY
@colleenyoung

Welcome to Connect @4catmom.
If you’d like to get a second opinion from experts at the Mayo Clinic, please call any of our 3 campuses, http://mayocl.in/1mtmR63. You will be offered an appointment within 48 hours. Be sure to mention the Brain Tumor 48-access program. They can help you and your sister navigate the healthcare journey, answer your questions and guide you through a treatment plan.

In the meantime, I’d like to introduce you to fellow Connect members who may be able to share their experiences with you about pain post surgery. Please meet @lindajean @pegorr @eleanor1931seminara1931 @user_che69bc66 @rareeby @55soon and @debb2010.

@4catmom, what state does your sister live in? You obviously care deeply for her. Are you lucky enough to live near her too?

Jump to this post

My Doc. is also not one for lots of suggestions or even questions, but I admire his surgery skill so much I give him a pass on his bedside/office manner. In fact, once he told me I was a pain in the b@##, and I fired right back that he was one as well, and then he hugged me when I left:-) Really hoping your sister can get to Mayo. peg

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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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