Mayo Clinic Connect
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.
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.
Liked by Scott, Volunteer Mentor
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!
Liked by Colleen Young, Connect Director, 4catmom
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
Liked by Colleen Young, Connect Director
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.
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
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!!!
Great information. Which Mayo clinic did you go to? Insurance is a problem. They do not have the finances to afford much. I’ve offered to pay towards her coverage. She’s extremely discouraged as every doctor she has seen always says they can’t do anything for her. They just give her pain pills. Her husband is over all of it. He has suggested divorce and told her she could go on Medicaid. It’s very sad but I’m not giving up on helping her.
I go to Mayo in Minnesota and fly from my home in Colorado. Mayo has a special deal with the airline so there is no change fee if your appointments make for a change in schedule. There was a special Mayo # as I remember….but I am out of town and don’t have access to my files, so maybe someone else can give you that info if you decide to fly your sister to one of the Mayo centers closest to you. I have a close friend who has chronic pain issues and goes to a local pain clinic and all their Doc does is prescribe pain pills too….they are now one of the sad cases addicted to them. Mayo is not that way….the Neurology Dept. scheduled me into Mayo’s pain clinic and as a personal example , the Pain clinic gave me injections into the base of my head for my severe constant headaches. They also started me on a drug that blocked nerve pain ( NOT pain meds). Your sisters care will be customized by her team. My Mayo care is TOTALLY different than my friends at their doctor and I am SO SO thankful and feel the quality of my life is SO improved , that it has been worth the extra effort to go to Mayo!! I can imagine that if I had not gotten the care there I could easily be in chronic depression due to unbearable pain, but they gave me my life back with a manageable level of how to deal with my permanent disabilities. Hard to put a price on that !!!!
Back to back outpatient surgeries (one delayed for the other to heal) gave me new insight into chronic pain. My experience this year, and reading these MAYO posts, enhanced my respect for anyone who chooses to live with pain on a daily basis year after year. That takes incredible physical and mental strength.
Meds merely reduce the pain highs, but don’t relieve pain — so my concern became addiction. Percocet was prescribed for 3-4 weeks, and more recently Hydrocodone (entering 4th week). Today I learned from a medical specialist that a combination of Acetaminophen and Ibuprofen may substitute for Hydrocodone. Europe is making a pill with this combination, I was told, but it’s easy enough to replicate here. I had taken the two OTC meds (Ibuprofen and Acetaminophen) in combination with Percocet, and was extending the Hydrocodone with a combination of Acetaminophen with Ibuprofen, but it had not yet occurred to me to try the two OTC meds alone.
With respect to comparative cost, check with your insurance plans. Ibuprofen 600 mg is available only by prescription. It is not expensive, but I think it may be less by prescription than thee 200 mg pills OTC. I prefer the 200 mg — over the 600 mg, because it reduces the highs and lows, but 600 mg is better at night. Pain is personal, and what works for one, does not work for another — thanks Mayo for treating us all as individuals !
And I was reminded by my vet — Ibuprofen is fatal for cats, but not necessarily dogs.
For my pets, my vet provides pill bottles with reversible tops — one way is child proof ?, but the other is not, and provides a handy “cup” for a pill.
Thanks, regulators, for providing vet meds in green containers and people meds in armber containers. And for those of us who do not need child-proof containers, these reversible tops make taking our medications easier.
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