My not so great Mayo experience
 

Hi all,

I booked an appointment with the Neurology services at Mayo Scottsdale four months ago for my visit this week. I was a little shocked that Mayo does not contract with Blue Cross Blue Shield of AZ but that's the way it is.

When I got there the patient area at the registration/check desks does not have any chairs to sit down. I have never seen that before. My appointment was for Monday but I had another two days of testing and appointments no one mentioned. I have never heard of ordering tests before getting a history/exam but maybe this is the Mayo way.

Out of the three and a half hours spent sitting around, I probably had half an hour of time with the attending/fellow.

My attending neurologist had the personality of a dish rag and seemed very distant. I have been improving and did not feel the advanced sensory testing/autonomic/EMG studies were necessary. Anyway they would cost me quite a bundle since the hospital has no contract with my insurance carrier.

Overall I was not impressed. I would have been even more upset if I had spent hours flying/driving there. I live only three miles away.

I am a physician and strive to treat my patients better than what I experienced.

Glenn

Hi, wow sorry you had a bad time but if you check they give all imformation
on all of the Mayo Clinics,on the page on the Mayo hospitals. It did
say something about,the insurance,and just curious why you didn't
realize that there is a big differences in those hospitals,and that Dr. could
of been fired. I was at the one in MN. and there's a big difference
I'm sure,but I still check on the insurance before I make a appointment.

I checked everything at the Cancer Hospital Barnes Jewish and
the Drs. I would be seeing..If you don't have the time a family
member could e-mail or call. I'm sorry you had such a bad time. Sue

Mayo Experience
 

Hi,

I knew the Mayo in Scottsdale did not take Blue Cross of Arizona when the appointment was made. The trouble with out of network is as follows. If a bill is 5000, the carrier will only pay 60% or so of what they consider the usual charge of what the service should cost. So if their vision is 3000, they will pay 1800 of the bill. The poor patient needs to pay 5000-1800 for the balance of the bill. The doc told me that the Mayo in MN and Fla do take Blue Cross.

I am sure that anyone could get a bad meal at a five star restaurant. I am sure most would have a good experience at the Mayo. My experience left me disappointed.

Glenn

Mayo
 

Appreciate feedback on Mayo in AZ - my docs have told me to go to Mayo - but my only option because of costs, travel, etc - would be AZ - (I'm in Calif)... and they arent contracted with Medicare either (I'm on SSDI) - and they told me they would bill them but they may or may not pay the charge and I'd be completely responsible.... I have heard many good things about their amyloid program (my docs have gone back and forth on this with me - had a positive biopsy in the past they couldnt repeat so was considering it)... but never heard about their neuro department....

Also, if you received such poor care as a physician - and dont you think physicians tend to sometimes have more respect for each other when treating - that a "civilian" may even have worse luck????? Just curious, 'cause my docs are still talking about me going and I'd hate to get out there and have a similar experience????:confused:

Have you checked out UCLA? They are listed as one of the top ten neuro centers by US News and World Report. UCLA would likely have a contract with medicare.

I have seen four neurologists over the years. Half were quite strange. I have had good luck with the Barrow Neurological Institute in Phoenix AZ.

Good luck,

Glenn

Thinking about it also
 

I tried scheduling an apt at Scottsdale Mayo in July and they finally called me in February to see a neuro there. I had become so tired of waiting that I began with another Scottsdale neurologist and have decided to give her a fair try before I go to Mayo, so I cancelled and postponed until summer. Their insurance is really bizarre as I'm on medicare with AARP supplement and still may have to pay some overages on allotted charges. Tom

Glenn ,
Do you have PN,and yes most neuro's are a bit odd,we have all mentioned
that in one way or other. You live in a great area,have a friend who was
a GP there.

If you liked Barrow why didn't you stay there? I just wish you could tell
us a little more about your problems and some of test you given..I'm
glad you brought this up.Being a Physician doesn't always mean you
will get better care.After being a nurse for 25 years,I've seen it go
both ways. I not sure but didn't you have more of a pain problem
in you spine? Nobody here would want to see anybody in pain.
I wish you luck. Sue

Glenn, I actually started my neuro experiences with them when I first got sick - they did great NCS/EMG's they even repeated the test twice in the same day on different machines cause they were doubting the results) and my sural nerve was sent to them for biopsy from another center and it was very thorough too, but often an appt would streach out for 6 hours waiting for resident to consult with attending - then they would eventually come back... their conclusion at the time (now they are quite a trek from me to get down there) - was "we've never seen someone's sensory nerves completely die in six months - and we will consult with other centers, etc... and get back to you"... never heard another word... if you have a name of someone that maybe I could get a private appt with that would be wonderful though - I know they have a PN support group that meets down there so they definately have an interest in it! (they definately do have contract with Medicare - Mayo was one of the few that didnt!

(in regards to UCLA I should add - I have gotten excellent cardiac care there, in addition to excellent MOHS surgery, and they have some of the best natured nurses and assistants I've ever come across)

(I was hoping first Mayo cause then they could look at all at once - gatroparesis - cardiac - back pain - abd stuff, etc. instead of constant trips to different docs etc... I wish they would just toss me in the hospital even here and do all the tests at once - dont know why they just cant do that for people who have multiple issues and cant get around easily, etc... but I have a feeling has to do with insurance also!)

Thanks

Sue,

I have had symptoms for over 20 years. They have been mostly mutifocal burning dysesthesias with some paresthesias and other neuropathic goodies thrown in. My neuro exams have been normal. I think the stress of having two foot operations in one month(10/07) really flared things up again, in terms of bad burning pains. The symptoms have waxed and waned. My Barrow doc feels it is a variant of small fiber neuropathy.....though I do not have any deficits. As many in the groups with this know the skin biopsy is a new quick diagnostic tool for this. There are also the expensive autonomic and sensory tests. Currently the Barrow does not offer these. In terms of the skin test my neurologist feels it has to be done by a good lab. He recommends only the labs at Mayo and Barnes in St Louis......thus the Mayo appt for another opinion.

Unfortunately Mayo in Scottsdale does not offer the skin biopsy...only the other expensive tests. I have had the million dollar blood workup in terms of all the diseases with small involvement such as diabetes. I feel better now and did not want the out of pocket costs with the Mayo tests. They would probably tell me... idiopathic small fiber disease.....no cure anyway.

Barrow has a new peripheral nerve attending who trained at Mayo Mn. Maybe he we set up the biopsy and other tests. Sorry for the long post.

Glenn

Well...
 

I would wonder if as an anesthesiologist...how much nitrous oxide you have been exposed to in the past 20 years? This is a huge risk factor for B12 metabolic failure.

What does one expect from the Mayo experience? A better diagnosis? ANY diagnosis? So you have small fiber...what will that tell you to do?

PN can be
hereditary
toxin induced (alcohol, occupational exposures)
drug induced (chemo, statins, HIV drugs, etc)
Chemically induced (solvents, nitrous oxide, etc)
nutritionally induced (low B12, and low thiamine, gluten intolerance)
autoimmune induced
rare disease connected (amyloidosis)
disease induced (hypothyroidism, prediabetes, paraneoplastic situations)

What is Mayo going to do for you that your own doctor cannot? Since you are a doctor yourself, you can get tests more easily than others posting here.

There is no miracle cure you know. The majority of the task is finding the correct diagnosis, for sometimes one CAN heal. However, the doctors will not offer healing to you...only drugs to suppress symptoms. Since Mayo Az....failed you, now you must take your own
case in hand and do it yourself. Like many of us here.

What kind of surgery did you have on your feet? I would start there.
But since you have had symptoms for 20 yrs? Thyroid, prediabetes, and occupational drug exposure should be your first stops, I would think.
Next up would be gluten intolerance/ B12 and MMA tests.

PN is a vast wasteland of wasted time, pain, and doctors who seem to not care much. When this happens people need to turn to support and other methods to find their answers. That is why there is an internet now.

My B12 and MMA are normal. I have not used nitrous oxide for years since it increases nausea and vomiting and possibly intracranial pressure during neurosurgery.

I thought the Mayo AZ would be able to do the skin biopsy. They do not. I did find out a group at Good Samaritan in Phoenix offers it.

You are right for an idiopathic cause of a disease, there is only symptom management.

I felt like a cog on a wheel at Mayo whose sole purpose was to make money for them via testing and large copays.

I have studied at some very good places including Northwestern University and Columbia University and did not see this atmosphere.

Glenn

What's "normal"? The standard ranges used in this country are very outdated and LOW. 250 B12 can be "normal", but it is NOT normal for your body. ( In Japan they treat anything lower than 500)

I think you are selling your body short. There ARE things you can try to heal yourself. Many here have made some strides in overcoming the discomforts of PN.

Firstly-- get an RX for Metanx.

Secondly...have testing for gluten intolerance/Celiac.


Those are the two biggies.

If you do not have markers for autoimmune disease, I assume you tested for that?, you don't need to consider IVIG at this time.

Twenty years of symptoms (mine started 30 yrs ago) suggests thyroid or hereditary CMT. Have you had good tests for those? My thyroid tested "normal" for years, yet I had a damaged gland that only showed up on technicium uptake(no antibodies). The hormone treatment lessened my symptoms about 80%.

This site has copies of papers on PN and gluten:
Including Celiac and PN by Norman Latov MD PhD and many other physicians who have experience with gluten.

http://jccglutenfree.googlepages.com/overviewarticles

Some drugs make PN worse or even cause it... ACE inhibitors(symptomatic burning), calcium channel blockers (symptomatic burning),
statins for cholesterol, Cipro and other fluroquinolones, metronidazole,
phenytoin, cisplatin, vincristine, HIV drugs, amiodarone, hydralazine,
Perhexiline, INH, dapsone, nitrofurantoin are some.

Occupational exposure is a potential for you...here is a dunning paper on dentists:
http://jada.ada.org/cgi/content/abstract/101/1/21

If you suspect a toxic cause then treatment with CoQ-10 and l-carnitine may help with any mitochondrial damage. These have been used for years by the AIDS communities, and l-carnitine is sometimes given prophylatically to people before chemo.

The MTHFR research is showing many people have errors in metabolism of the methylation chemistry in their bodies. This negatively impacts the nerves.
(and other things). The new vitamin mixture Metanx is designed to help people with these hidden errors. (there are 25 or so known mutations at this time).
http://www.metanx.com/
This would be the best vitamin mix you can use at this time.

If you are EFA deficient, you cannot maintain myelin repair. So depending on what you eat and don't eat, you may consider taking omega-3 fatty acids. And most assuredly avoid all trans fats (which are very damaging). Myelin is repaired thru the methylation chemistry but also must have fatty acids in the diet.

Much of medicine regarding PN, can be causitive. (drugs etc). And much of medicine ignores PN, except for dramatic presentations of autoimmune disease that can be treated with IVIG. Symptom control is poor, IMO at this time.

Other interventions involve thiamine and its newer better form benfotiamine, and R-lipoic acid. Some people respond well to GLA from evening primrose or borage oil. (these are found on diabetes papers).
example:
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

So there are things you can do. PubMed offers many papers from around the world on this subject... that is where I go for answers.

Good Luck.

Glenn:

Sorry to hear your experience at the clinic was not good. Frankly, in my own personal experience, I have ended up with several neurologists, shall we say lacking in bedside manner. I do believe there is still hope for that specialty, as my current Neurologist seems to have passed that course with flying colors. Perhaps others become insensitive after doing numerous pain inflicting EMG/NC studies...

Anyway, about the skin testing. I believe Johns Hopkins has done quite a lot of work in this area. I spoke with someone in their neuromuscular lab, who told me that they could send the kit, then give a local doctor, or even a PA, about 5 minutes of instruction on the phone on how to take the necessary sample. The sample is then returned to them for diagnostics.

Are you comfortable in sharing what type of foot surgery you had?

Cathie

It is interesting--
 

--that between this board and a number of others, I've read very mixed reviews about the Mayo clinic experience from a number of people. It's a very unscientific sample, of course, but it seems the people who went to the original clinic in Rochester MN had better experiences overall than those who went to AZ or FL--not sure why this should be.

On the other hand, I've heard far fewer bad reports from those who went to Cornell-Weill, Jack Miller in Chicago, or Hopkins; I suspect that at those places the neurology departments have more doctors/researchers intrested in peripheral nerve damage and more inquisitiveness into "unusual" cases.

Hi Yorkiemom,

The foot surgeries were cheiletomies on the great toes to clean up arthritis. The first two weeks after surgery were quite painful.

Glenn

Brutal
 

Wow...that is one brutal surgery... I found PICTURES of it on the net!
Whatever process led you to that procedure, must still be going on, and causing trouble.

Once the feet are affected I think by ANYTHING, you have constant woe.
If this is where your pain is concentrated, you can try local solutions.
Compounded topical transdermal gels with ketorlac, ketamine, gabapentin, may help. People with RSD use them, but so do arthritics.
Also Lidoderm patches can be cut and creatively applied on your foot (I prefer the top of the foot for my pain/burning) for relief. I choose locations to interrupt signals, and find application to the exact site of pain is less effective.

I have broken sesamoids myself and am avoiding surgery. I know people who have had it and relief from removal is not good with that surgery. So when I flare due to some foot movements/mistakes I use patches and also the OTC Salonpas. I haven't tried the new patch Flector yet (diclofenac patch), since my Salonpas work well for me and are MUCH less expensive.

Burning in the foot can be temporarily blocked by high concentration menthol products. Biofreeze is what I was given, but there are others. The menthol selectively stimulates cold receptors and overrides the heat ones that are
firing too much.

Brian and I use high quality neodymium magnets for severe pain. I used one when I broke my toe (a big boulder crushed my toe while I was working in the garden). It had two breaks, and was badly bruised. Magnets block pain very well, IF you get the right type, a very strong one and apply them to the right place (over a nerve path). I did not find
shoe magnet inserts valuable at all (not strong enough). You need at least 5000 to 6000 gauss, and the ones I found were 10,000 gauss.

This is an example of EXPENSIVE:
http://www.buyamag.com/health_magnets.htm

This is AFFORDABLE...
http://www.magnetictherapymagnets.com/biomag.html

I don't like using them on the head, as they can cause dizziness if you have any ear problems.

One really strong magnet per foot applied over the nerve distribution to the toes will do it. (it does for me).
I use Micropore tape, and moleskin on the metalic side touching the skin.
My podiatrist suggested the moleskin (he uses magnets all the time) to prevent "magnet burn". And some people are allergic to nickel.
People laugh, but they do work. When you are in pain, you will try ANYTHING.

Topical solutions if you can get them to work, are the best IMO.

And if you have only mostly burning... please try Thiamine 200-300mg/day divided doses, or 150mg to 300mg of Benfotiamine. This intervention is very powerful for people with dehydrogenase failures, which are more common than many doctors think. Thiamine can be depleted by drug therapies (most antibiotics, diuretics, theophylline, digoxin) and use of alcohol and/or disufuram and/or Flagyl interfere with this metabolic system. Benfotiamine just came down in price and I have switched to it...with much better results than the old thiamine I was using. There are many papers now on PubMed showing improvements in PN with it.

Hi,

Thanks for the extensive replies MrsD!

Glenn1 mentioned some issues with the Mayo AZ. I live only three miles from it, so the trip was not a big deal. The Mayo AZ seems to be the smallest of the three. I think the hospital is only about 250 beds. Of course there are a lot fewer neurologists than at Rochester.

Glenn2

Sorry you had such a crummy experience. The only neurologist I have seen so far who even took me seriously was the one at Mayo, but it was at their main hospital in Rochester, Minnesota. In my case, I did need the expensive testing because no one else had bothered to look into my autonomic and other neuropathy symptoms other than a brief nerve conduction study.

I saw Dr. Joon Uhm, by the way. I think you can look him up on Mayo's website.

fanfaire
:cool: