Sister has severe head pain 3 years post Meningioma surgery
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?
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.
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.
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.
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!
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.
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.
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.
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
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.