After reading everyone's entry ( in "When doctors want to remove your meds ") I have to say that I think there's a new fad of treatment centers of plans just for this purpose; to get all patients off meds, more active, and back to a working lifestyle. And I think it's being driven by our govt involvements. But they aren't taking everything into account, every diagnosis for why you're on the meds. Rather than hijack that post I'm explaining here.
We took our trip to Mayo for testing this week, in regards to my dizziness, imbalance, and tremors. It was exhausting and frustrating and confusing, to say the least. On Tuesday I went through a neuro-psychologist evaluation, and was told later they found I have the ability to learn and retain information at the normal range for my age (54); no dementia. Well that's good news, but I've taken those same tests elsewhere and remembered them being reworded statements & questions & puzzles to try and trip you up, so naturally I did better. I'm glad it's not dementia, but my hubby even said they are wrong because of how I trip over words and forget something he said 5-10 minutes before. I'm having short term memory issues.
On Wednesday I first had a hearing test, which did show I have hearing loss, same as the test I had at home. Then they put me through multiple tests using evoked potentials. I did fairly well until the last one, when I began gagging from the wind blowing in my ears. Then I had an EMG on both arms/hands & legs. It was exhausting!
The good thing from all this testing is I don't meet the criteria for MS or Parkinson's disease. The bad thing is we are confused at the answers we were given. As doc explained, the tremors, dizziness, and imbalance is suspected to be a break in the communication between my brain and my limbs, like a "software glitch." He kept saying the hardware in my brain was fine, and my issues are real (I'm not crazy or imagining it ", duh!), but the software (or synapses) aren't working properly. He then commented that I/we had mentioned my home doctors were passing me from one to another without helping. He mentioned my riding in carts and using a cane and walker. He mentioned my headaches increasing again and they could help them decrease. He then mentioned I was on a very long list of medications, way too many that needed reevaluation and decreasing. What!?
He asked me if I'd be willing to go through a 3-week outpatient treatment program, because he believed I would definitely benefit from it. We were shocked because it's already cost us an arm and a leg to drive down twice and stay in hotels; for food, gas & lodging we've spent between $1500-$2000 already. That doesn't include what we will owe the hospital for tests and exams.
I told him before I could commit to a decision that would be a definite hardship on not only me but my hubby also, I needed to (1) know the cost, (2) speak with my insurance to see if it's covered, (3) see if my hubby can take off to drive me, & (4) find out if there are alternatives closer to home. He responded by saying the only other place besides Mayo's is located in Chattanooga Tennessee, but he didn't know of any others. I reiterated I would need answers to the 4 areas, and he gave us a yellow card, marked a box on it and said, "Return here in the morning. Give this card to the clerk, and tell them you need to speak to financial services. They can have someone come speak with you."
We left and spent the next 10-12 hours so stressed at the potential cost, neither of us slept. We'd have to get a hotel room, and the lowest found (without driving an hour one way) is $99/nt, minimal $1485, maximum $2079 (not including taxes), for 15-21 nights (if we drove home on weekends which doesn't seem feasible). He said it's 8-10 hours each day in the program, meaning if we drove home we'd either have to travel after dark on excluded roads, or wait and leave Saturday, returning Sunday to be at the clinic by 8am the next Monday. It takes 2 tanks of gas one way, a minimal $60-75 each way. We'd have to board our dog the same length at $28/nt, appx $420-588. And my hubby would have to be off work the whole time, and away from his mom who he is guardian over (and she's seriously declining). Whats he to do the 8-10 hours I'm in op clinic? Now this past week we spent appx $200-250 for lunches and suppers. If we go for 15-21 days, omg we'll be broke! And we have to stop our mail for that time, or reroute it elsewhere.
We showed up at the clinic Thursday morning, gave the clerk the yellow card and told them the doc said they could get financial services (FS) to come speak with us. We were told to sit down and wait. About 15 minutes later a RN and out with a piece of paper and said the docs orders didn't mention FS, but she was trying to get approval from my insurance for an appt to see the head doc over the 3-wk clinic. I told her what convo has been the evening before with the doc. She said, "well he wants you in it, but his job is to diagnose. The head doc of the clinic will determine if you fit the criteria for the clinic. He may decide you don't, but you have to meet with him." She left and returned 10 minutes later with the approved appt. We're to return to Mayo next Tuesday morning, early, so we must drive down Monday and get another hotel room, gas, dog boarding, and meals!
On the way home I looked up the doctors name, to find out he's over the psychiatry dept as well as the clinic. I also found the clinic. Here's the link: http://www.mayoclinic.org/departments-centers/pain-rehabilitation/florida/overview#
The more my hubby and I go over all the hardship and cost, and the planned treatment, which my doc was apparently evasive about, the angrier and frustrated we get, especially me. I would appreciate some feedback. Maybe the "cost/hardship" is making me/us not see the whole picture. I do know "long list of meds" he referred to is 60-75% PRN meds only, not even used monthly; migraines and muscle spasms and breakthrough pain flares, etc. Why would I want a doc 100's miles away determine my meds needs, when I won't be traveling to see them monthly? He's not considering my other issues either; hypothyroidism, sjogrens, TMJ/TMJD, osteoarthritis, pelvic floor dysfunction, pelvic congestion syndrome, bowel & bladder issues, etc, etc. I have to get up and eat 3 hours before I can leave my house because of my IBS and incontinence. My cardio doc told me to rest frequently with my legs elevated due to the venous reflux. My psych doc said I'll likely never work again. I commented to the doc I'd been in PT for balance & strength training, and the girl said I'd benefit from more therapy. Before I commit to any program I want to talk with my home docs about Mayo's potential meds reduction and extreme PT/OT plan. Why can't I go through more PT/OT at home, see my pain mgt doc and a physiotherapist (whatever that is) here? For crying out loud, I have exercise -induced, allergy enhanced asthma! How will i hold out for 8-10 hours a day. I sent even take one flight of stairs, let alone 2! Am I freaking out for nothing? 🙏🌼