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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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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!!!
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1 ReactionGreat 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.
Thank you!
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 !!!!
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1 ReactionBack 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.
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.
My pleasure! BEST of luck 🙂
@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.
Wonderful! Thanks so much. Now I have to figure out finances!