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Joe
@tchdwnva

Posts: 1
Joined: Jun 30, 2016

Experience with Mayo Clinic in FL?

Posted by @tchdwnva, Jun 29, 2016

Hi – I am looking into the Mayo Clinic in Florida to deal with chronic back pain. I’ve been through every treatment imaginable with little relief, and my doctor suggested this as next step. Has anyone participated in the program? If so, does it really offer the comprehensive range of treatments described on the web site, or is it weighted heavily toward getting patients off meds. Thanks in advance for any insight.

REPLY

Hi @tchdwnva. Welcome to Connect!

I’m tagging @abelew, @1lundboat, @drewr and @leh09 who have been through the program and can hopefully provide some insights!

We are glad to have you here 🙂

You may also find this patient story interesting and helpful: http://sharing.mayoclinic.org/discussion/patients-tell-how-pain-rehabilitation-program-brought-them-relief/

Hi, Is your back pain due to an injury? You have had your back xray’d mri’d and all that and you still have pain? Do you do the therapeutic exercises like the Thompson manuvers? Even gentle stretching like laying on the floor and pulling your knees up one at a time can often alleviate some pain. Accupuncture? That stuff really works! I hope the pain clinic is a non-medication solution. Sometimes you can get some IV lidacine that can relieve pain at least for a while.
I am so sorry you are going through this. Chronic pain sucks!

Assuming Florida Mayo operates like the others, there are several issues. Most of the staff are terrific. Kind, gentle, honest. And some of the MDs are the some. However, there also some who are in it just for the ego and the money. Once you recognize them, find someone else. And remember that you must remember that YOU are in control of your body. If you do not take some charge, they will keep you on the hook for months on end, apparently to keep you coming back for more. And remember that this is not just a roomful of experts. It is a gathering of ordinary folks with limited equipment and training. Most of these folks really care, and try to do what is right and good. And I suspect it would be the same at almost any hospital, especially the other rural or urban clinics of America.

It’s an excellent program, but there is a large aspect that is about reducing medication reliance. Anyone who is experiencing chronic pain would benefit from this intensive program. The staff are all highly qualified and truly care about each person. It is life changing!

@leh09

It’s an excellent program, but there is a large aspect that is about reducing medication reliance. Anyone who is experiencing chronic pain would benefit from this intensive program. The staff are all highly qualified and truly care about each person. It is life changing!

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Unless you are not on medications and the first thing the Doctor says is “lets get you off all the narcotics and then we can work on a program for resolving your pain long term with out meds”. Hey look in my file, I am allergic to all the good stuff, so let’s start with the program that will help with the chronic pain I have to live with for life, due to the mass of coils leaning on my brain stem from when my fabulous Mayo Doctor fixed my aneurysm.

I went to Mayo neurology dept. in Florida several years ago. I am impressed with the doctors there except the pain management dept. I tried to make a appointment many times and they are so booked for the neurology dept. I was told to try next year. How do I get in.

@fifi

I went to Mayo neurology dept. in Florida several years ago. I am impressed with the doctors there except the pain management dept. I tried to make a appointment many times and they are so booked for the neurology dept. I was told to try next year. How do I get in.

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I did not have a good experience with Mayo on this last visit. I did not know enough about their style, so I made several bad errors. I had a diagnosis and multiple lab tests (positive) of a very serious disease (Serum Free Lite Chain Amyloidosis). I really felt I needed a confirming diagnosis from a major clinic.

My first mistake: Picking a med school rather than a strong and experienced clinic. The people who set up my appointment had no clue of what I have, nor what would constitute a diagnosis. So I suffered through 4 months of general first year med school irrelevance. What I needed could have been achieved in a couple weeks.

My second mistake: Assuming that all people at Mayo had a clear sense of their own function and ethics. At least 5 MDs said to me, in effect, ” I don’t care the skill level of med personnel you have seen before. Here we operate this way: If we did not discover it, you do not have it.” This was made worse by the MDs ignoring numerous lab reports, even from Mayo labs because they interfered with the MDs pre-conceived guesswork.

Third: I found a book edited by numerous staff members from Mayo at Rochester, including Dr. M.A.Gertz, a ranking professional at Rochester. I studied that book, and became familiar with terminology and processes and diagnoses. I assumed the staff I would be working with at Arizona would be familiar with the material and persons listed therein. No Way! Only two or three had any notion of either until I started beating them over the head with it.

Fourth: I finally, after spending several thousand dollars, left there to go someplace to get the diagnosis. But because I had spent all my money, I still don’t have the diagnosis, just the symptoms. In the process, I did find out I had a small cancer to be removed, although there was considerable disagreement whether that was needed or not. But I still cannot afford to get my needed diagnosis. I just have a list of symptoms, and knowledge of a likely life span time.

No, it was not pleasant, except the techs, and junior medicos, and schedulers, and ……..

So here I am, just waiting ….

@fifi

I went to Mayo neurology dept. in Florida several years ago. I am impressed with the doctors there except the pain management dept. I tried to make a appointment many times and they are so booked for the neurology dept. I was told to try next year. How do I get in.

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I can relate to all that. I was seen once in the Neurology Clinic at Jacksonville several years ago and was also impressed. When i needed to be reevaluated recently even my Mayo oncologist’s PERSONAL intervention couldn’t get me in. If you live close by (or even if you don’t) you can show up and ask to get on the stand-by waiting list. If someone doesn’t show up you can take their slot. This has never worked for me at Jacksonville but it worked 4 different times (much to my surprise – and I didn’t even have to wait that long) at Mayo-Rochester.

That said, the Pain Clinic tried hard to help me with my back pain but they could neither diagnosis it or treat it. A local PT has isolated a cramped muscle (long name I can never remember) and physical manipulation has given me the first relief I have felt in years. So far the relief only lasts about a day but at this point anything is an improvement!

Mayo-Rochester has a Pain Program (which believe Jacksonville also has) which is a last ditch/I’ve tried EVERYTHING else/ALL else has failed program and is a combination of meditation, behavioral stuff, psychological stuff that I was ‘t eligible for when I looked into it b/c I still had medical options to investigate. But if worse comes to worse . . . it might be worth checking out.

Hi,

I recently visited Mayo in Florida.

It cannot be compared to any other medical facility/experience. I went there for more in depth answers and they were given to me…although I am not quite finished.

I have respect for the people who work there, the procedures and they way that I was treated was amazing! The doctors spend an hour just talking to you and listening. Go there organized with notes and questions so that your time is well utilized.

What is remarkable is the number of people who come through the door all day every day looking for help yet I did not feel like a number.

@fifi

I went to Mayo neurology dept. in Florida several years ago. I am impressed with the doctors there except the pain management dept. I tried to make a appointment many times and they are so booked for the neurology dept. I was told to try next year. How do I get in.

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I went thru the chronic pain clinic at Mayo Rochester. I was referred by my primary and also my Dr. at Rochester. First question was there goal to get you off meds so they can treat and recognize your symptoms…Yes. The biggest problem I saw with this was that I was not informed of this ahead of time so no tapering program was started before I went. It is definitely a wide ranging program as you mentioned. Someone mentioned the cost which can certainly be prohibitive luckily it was covered by my insurance but I still had living expenses during the month I was in the program and had to stay in Rochester. They were strict about working the program if you weren’t serious they kicked your butt out…there was a long waiting list. All of this is from several years ago so take it for what it is worth.
I go to Mayo Rochester every 3 months or more if needed. I have always been told they do not make appts more than 3 months out.
I have tried (and tried) to make it clear that in oncology I do not find it acceptable to see students who know absolutely nothing about my rare cancer, they are welcome to shadow but not be my primary…this does not always work and sometimes end up with an appointment that is a disaster,like my last oncology appointment. I must mention though that Mayo has bent over backwards to get me the care I should have had the first time around and they strive to deliver.

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