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Mayo trip 😲. 😡. 😫. πŸ™‡

Sep 26, 2015 10:15 AM

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#

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? πŸ™πŸŒΌ

Sep 26, 2015 1:15 PM

Flappys forgive my choppy attention span-- you were able to get FS? Is it significant relief? I know exactly what you mean about the angst and frustration and confusion. That is exactly why I stopped telling doctors about meds, except those I trust implicitly in specific instances. I have an Rx for Flexeril from 2012. I bite off a chip of a pill when I can, may feel hungover the next day if it's too much, or it will work one night and not the next, and no it's not dangerous or going to kill me from the expiration date. Do I list this medication--to get through the conversation about how Physical Therapy is much more effective and I should not rely on muscle relaxers because they're addicting, from someone who has no idea what chronic insufferable pain is or how much discomfort and what kind I have to be in before I consider biting off a chip of Flexeril? The one time a clear contraindication appeared the pharmacist didn't catch it--both medications prescribed together! I caught it by sheer coincidence looking up side effects of Toprol--it has a synergistic effect with the Welbutrin that my p-doc wanted me try again (this decade). I wound up stopping both of them! And who can explain all of that detail in between the next two details while you're suffering and can't remember the last five minutes anyhow? The link you provided won't fill on my device but that's probably because of my device. Do you think you would benefit from the program--which might ease or balance out the pain of the financial and temporary physical burdens--or are you and hubby not feeling good about most of it? You can always leave early if you don't like it or find that it is at cross purposes for your health? I'm glad your husband is helping you--it's hard to figure out the cost-benefit ratio --or to find the right decision when it involves the intracacies of our bodies, the unknowns, etc. etc. Do you have to decide right away? I'm going to read your post again Flappys. I'm thinking of you. Keep getting information and trust your gut.

Sep 26, 2015 2:30 PM

Marsemouse, We have not even heard from anyone in the financial services Dept. We have no idea how much it will cost. Considering my one day evaluation in July was billed at $1500.00, I'm expecting 15 days to cost more than $20,000.00, and that's just minimal figure for the program. It doesn't include the cost of gas, lodging, or food.

I'm positive I'd benefit from PT & OT, but I'm certain that if collapse with 8 hour days. I went through 12 sessions of 30 minutes each July & August, for strength and balance training. The tech said my doc should renew the order so I can gain more from it. For 2 months now, I try to walk on our treadmill at least 1-2 times a day, 10-20 minutes each. If I'm having a good day and overdo it I pay for it for 2-3 days, unable to walk at all.

We had to go get groceries this morning and I decided to push the night instead of ride a cart. It took us 1 1/2 hours to get through the store due to saturated crowds. By the time we were checking out I was fatigued, shaky, overheated and sweating. Now back home in exhausted. Two weeks ago I walked through a small store for thirty minutes and the next day I could barely get out of bed.

If the link didn't work, go to www.mayoclinic.org. Then search for "Comprehensive Pain Management Center." Has anyone else ever gone through a program like this? If so, what was it like?

Sep 26, 2015 9:32 PM

Flappys, this is just my opinion but something really doesn't sit well with me on this. I can't explain it, but go with your gut.

Sep 26, 2015 9:57 PM

Flappsy I'm with Amanda on this something smells bad in Denmark. If you decide to go for the 3 wks see if they have a Ronald McDonald House or some other facility where you only pay what you can afford or nothing at all. Here we have a place where family's can stay for 15 dollars a night. Don't push yourself too hard, where you have to pay for it later. I hope you can get some answer's soon. Be praying for y'all. Sending hugs.

Sep 26, 2015 10:15 PM

It's not sitting well with us either. Don't get me wrong... We are very grateful the evoked potentials tests showed I do not have MS & such!!! πŸ™Œ But the more we talk about it the more we are convinced that because Mayo doc didn't know the cause of my tremors and imbalance, he just jumped onto the "too many meds makes her a candidate for our program.".

We realized that they didn't take the first X-ray, MRI, or any test on my spine. If my gut instinct is right, my tremors are coming from my neck discs, but not one single doctor will listen. I'm losing more strength in it as time passes. There was one thing snowing an abnormal reading on the VIII cranial nerve, from the EMG they did. They have not considered other causes for my symptoms.

Ironically my dad came by today to find out what happened. At first he thought I should do the plan. But when I finally helped him realize that our goal at Mayo was to verify if I had MS or not, and there's no logical reason I can't do PT and OT somewhere close by, he started adding up the costs and said he doesn't think I should go either. I actually researched and found out my local hospital has a pain clinic with PT and OT. Maybe they don't have the most expensive equipment Mayo has, but other patients have benefitted just fine. We're going to see the other doc Tuesday, and I hope I can get him to refer me out to treatments here. I guess I'm just venting from frustration. Shewwwww... Now I feel better getting it off my chest! Lol. πŸ™πŸŒΌ

Sep 27, 2015 12:25 AM

This sounds very like my experience with pain management at the children's hospital. Except, they acknowledged multiple options.
1) Inpatient care at Seattle Children's hospital - approx. $30,000 for a 3 week - 4 month in the hospital, wouldn't need a hotel
2) Outpatient care at OHSU or local PT - insurance would pay, but if I stay at OHSU I could work with someone familiar with my diagnosis
3) Get a 2nd opinion from Boston Children's - questionable amount of money, requires flight to opposite side of the US
We did the 2nd option, and decided if that failed we'd try the inpatient care.
Did your doc mention other options?
If they are only pushing for one option, I would be careful because that seems standout narrow minded, especially with how important money is for survival.
Good luck!

Sep 27, 2015 8:48 AM

Ferretbandit, his words to us when I asked about alternatives closer to home was, "Mayo in MN started this program and we got it in 2011. I o only know of one other place that has this interdisciplinary team program and its in Chattanooga TN. No one in GA or anywhere else has a program like this to my knowledge.". That alone sounded closed minded to us both. Maybe I would have to go to multiple offices for the " integrated " treatment they think I should have, but at home it wouldn't be as stressful or as bad a financial burden.

Sep 27, 2015 5:08 PM

I drove 4 - 8 (if we left during rush hour) hours found trip to PT once a week. I had the option to stay near home, but didn't want to trust a random person after hearing horror stories where PT accidentally made pain much much much worse.
Possibly trust your gut on this one. Definitely look into clinics closer, I've also heard of people creating their own "teams" of doctors, but they have to get more creative about communication and trust if they aren't in the Dame office. Best of luck to you!

Sep 27, 2015 5:32 PM

I hate it when they bulldoze right over you when you are trying to explain something to them. Just follow your gut Flappsy. I'm with you on this finding PT and OT closer to home, finding a doc who will listen to you about the disk in your neck. Good luck praying for you and sending hugs.

Sep 27, 2015 10:20 PM

Well unlike the Neuro-psychologist doc who want on our insurance list, at least this doc is.. We've pretty much decided to go with closer to home, even if I do have to travel between various offices. They're going to have to give me some hard sure-fire evidence to convince me the cost in FL is worth it. I can't afford to pay thousands out of our pocket (with a hole in it). Lol. Thank you all for your advice, opinions, and support!

My hubby was looking up the words in the reports I didn't know, and I've forgotten already. But I have a"movement disorder " likely caused by care I'm receiving (iatrogenic= meds). He went to the pharmacy for me and they asked how the trip went. After he told them the pharmacist said, "She's not on any narcotics or major pain meds. She doesn't needed a pain clinic to wean her offer anything.". It's kind of funny to see people's reaction when they hear what Mayo said. Oh will I have to try and sleep, as we head back down tomorrow. Goldsmith and sweet dream blessings on all! πŸ™πŸŒΌ

Sep 28, 2015 10:23 PM

There is a program in ohio at the Cleveland clinic that does the same thing and your family has to be involved that is where my doctors keep trying to push me. Here are my problems
1. Never done that muchildren in 10 house since before the age of 10
2. When I exercise on land I get worse
3. The guy who runs it would not listen to me when I was younger and almost killed me
4. I don't have the energy and my sleep schedule does not know what 8a.m. looks like
5. The schedule of activities is scarry.
6. Why should I do this after 26 years of having a disease when I know my limitations.
I do know people it has helped but I would never pay that kinds of money they would have to find financial aid or give me a grant.

Sep 29, 2015 12:34 AM

Flappsy, I am in total agreement with you about the government interference with patients on pain medication. The regulations keep getting more and more stringent and they want to have folks come off all of their meds and go back to work. I have to say that the problem is, when they do not even consider your other diagnosis and are only looking at your list of medicarions, the doctor is NOT taking in the complete picture so how can he treat you effectively?? With the exorbitant costs and stress and travel adding to your pain, it seems counterproductive. You know your body, you got results from Mayo (even some that were confusing or conflicting). I don't see how they could possibly think with all of the issues you have dealt with over the years that Not taking meds is going to make your life easier. Are you supposed to just deal with the pain?? How are you supposed to get relief?? I'm so sorry Flappsy, I think that this doctor you spoke to wants you in that clinic for one reason and that's to get you off medication, not treat your medical issues. I pray that God shows you a clear path to what will be the best for you. For you to have your pain managed, your stress reduced and your life better. You're always in my thoughts and prayers, my friend. I wish the very best for you. If you need me just holler, you know I'll come running. Hang in there. πŸ’•πŸ™πŸ»πŸŒ»

Sep 29, 2015 5:55 PM

Always what you said about having all of the issues and thinking not taking meds is going to make your life easier-- I struggle with this. I'm dual diagnoses and had problems with addiction as a kid. Most people in the 12 step paradigm say stop all the meds no matter what, with any history of addiction. I went with that for years. I wasn't as sick but it still really sucked. Some think pain killers wind up creating more pain-true in some cases but there are so many variables. If I factored in every origin of pain it would take at 2 years 8 specialists 3 surgeons and a million bucks (at least) to start. We don't have a lot of alternatives. They often use opiate substitutes like subuxone for pain and to get off pain meds. I didn't do well with it and think it messed up my opiate receptors even more--this is where I vote for the next scientific breakthrough. Sorry to hijack the thread--I'm glad you resolved this and found a treatment you feel good about FlappysπŸ’•

Sep 29, 2015 7:09 PM

I should clarify -- twelve step principle is abstinence from all mind altering substances, has literature about dealing with Illness in 'sobriety' and people use meds with peer support. Medical weed is hotly debated, usually vetoed by purists. Medical weed is the only time I'm able to distract!!

Sep 29, 2015 9:01 PM

Thanks to everyone! I feel doubly confused tonight, especially after posting my other Mayo Pain Rehab Clinic topic, and a 5 1/2 he rides home. I will move to that topic to expand the discussion. πŸ™πŸŒΌ

Sep 29, 2015 9:12 PM

I am with the group. If you have mixed emotions and are dealing with a doctor that thinks he is God,I don't know that I would do it. There is one thing that really bothers me, the doctor that did not have enough follow thru to be sure that you are protected financially. That is arrogance and I hate arrogance. Go with your gut whichever way you decide.

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