I have been referred to Mayo Clinic by my PC. Mayo has called me and is going to schedule an appointment with me soon. I am very happy that I may be close to answers as to why I am going through all of this stuff. Anyone care to share any stories or experiences of Mayo in Rochester?
There are a few across the US and I believe in other countries. It is a clinic that has specialists for almost everything. They are very prestige clinic where people all over the world come to with serious illnesses.
What makes their clinic special, cuz I know where I live there's OHSU which is a medical university/specialist place, I don't know all the services they offer, but they have the opportunity for every type I know of...
"Mayo Clinic is recognized for high-quality patient care more often than any other academic medical center in the nation.
These endorsements reinforce our century-old commitment to provide the highest quality care to each patient every day. Although no single set of measures can perfectly represent health care quality, we are proud to be recognized." -Mayo Clinic
That would be why I haven't gone, I guess. I'm in Oregon, so we have the Portland Children's hospital, which I think is perry cool, but my sister thinks is depressing. Ironically, I've spent more time there, and definitely prefer colors to the normal total white.
Tmiller, I wish you the best and will praying you have a much better outcome than I did. I was sent to Mayo (FL) in July by my neurologist because of dizziness, imbalance, memory issues & tremors. The neurologist suspected MS. I made three trips down and due to the distance, staying overnight multiple nights, folks & gas, it cost me over $3k. I was put through a full neurological exam the first visit, which the only thing the doc said was he believed I had a short circuiting or misfiring in my brain. The second visit they put me through there major tests, using very expensive equipment. I had irregular but not definitive results, so the final dx were 1) vestibular Neuronitis (dizziness/imbalance cause), 2) Memory Loss, 3) Movement Disorder of unknown cause (tremors). The only dx I hadn't already been given was the Vestibular Neuronitis. He did not believe I have MS (a good thing). It others me & my hubby they didn't do a MRI of the brain or the cervical spine to see if I'd had further frontal lobe changes, or if something in the spine was causing the tremors &/or imbalance.
I was instructed to return a third time to meet with their chronic pain specialist, because the primary Mayo doc felt I was on too much meds and it could be the cause of most if not all my issues. He said he thought I'd be a good candidate for their 3 week rehab, to regain mobility without meds. Mind you, only 4 meds were pain related to my fibromyalgia and chronic pain; Tramadol, Midrin for migraines, Parafon forte for muscle spasms, & Tylenol Arthritis (I'm allergic to our have adverse reactions to narcotics). The other meds are for sjogrens, hypothyroidism, depression, anxiety, and bowel function/pelvic floor dysfunction. So we returned and meet with the pain clinic doc. He said my body was totally deconditioned and is go through PT, OT, behavior modification, counseling, and med rehab. I was too take all my med and they would prescribe what I needed, and they'd expect my local docs to continue with their plan. In the 2-3 hours we went through the interview process, I mentioned twice that I didn't think I could afford to go down for 3 weeks (24 nights hotel, gas, & food), or that my insurance would cover it. They really did a great job at selling me and my hubby that I'd basically be cured from pain, my body would be reconditioned so that is walk out without a cane when I left. They told me twice that of I couldn't afford to come immediately, then I could save up my money and return in 1-2 years if that's how long it took to save it up. I asked what the programs 21 days cost; $30k minimum. Red flag alert... If it was so important for me to do the program, why wait 1-2 years?
As we drove home we discussed and thought and discussed some more. I began to check around for local PT/OT therapy sources. I spoke with several of my local docs and decided to do the PT/OT & psychology therapy with local providers, instead of going to Mayo. We just couldn't afford 20% of the $30k cost, let alone nearly $3k more for hotel, travel, & folks.
I knew I'd owe $1000-1500 for my deductible on those three visits. But I was shocked when my insurance notified me that I would owe $3200 because the hospitals tests (3) were not proven tests, nor did the documentation support the need for such tests. The insurance wouldn't pay for them! Has i ignored my gut instincts and gone down for the $30kk, 21 day program, is probably be billed for all of that too. Not only that, Mayo expected me to be on my feet for 8-9 hour days; PT, OT, behavior modifications, psych counseling, etc. I haven't been on my feet for 8 hours since I last worked on 2010. My PCP days I can not hold up to join demands. I couldn't see being able to hold out without collapsing.
My experience want a total waste because, if they're right, I don't have MS. But remember the insurance said the tests run weren't proven viable treats. And Mayo didn't look at my brain or spine in regards to MS, dizziness, or the imbalance & memory loss.
On the flip side my dad went down for 9 mood of slow internal bleeding. No local doc or hospital could find out why. Mayo had the ability to scope textually and down through the stomach, with cameras and cauterizing instruments. When the two scopes meet in the middle (no other local hospital has that ability) they cauterized bleeding venous malformations. They saved his life because he was s slowly weakening and his land were way out of whack but no one local knew how to help him.
My advice is to go hoping for good results. But follow your gut instincts. If it sounds too good to be true, it usually is. I will pray you have a much better outcome! 🙏🌼
Thank you so much for sharing your experience♡ I'm sorry it wasn't the best one though. We have exhausted our resources here and my symptoms keep getting worse and worse. This Mayo trip will hopefully give me some insight to what is happening to me and what is wrong. I have that terrible feeling in my stomach if I don't do something soon, I'm going to pay for it for the rest of my life.