Experiences with the movement disorder clinics at Baylor, Columbia, or Rochester?

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Permalink Reply by ramona on August 21, 2009 at 3:31pm

I read in an article written (to the medical profession) by the top doc at Baylor that he basically considers most patients who are referred to him to have already been through the diagnostic wringer. Thus, if all of the regular testing has come back negative, they are assumed to have an illness with a psychogenic basis.

The exception seems to be patients that have very obvious conditions with "normal" manifestations.

I do not have any information on the others, but be sure to check your insurance company to see what they will pay at each. I was going to go to Mayo (Rochester), until I found out that I would be responsible for a big chunk of the bill (I was told that they do not write off what insurance does not pay like other institutions do). They (financial office at Mayo) could not tell me upfront how much I would owe, so I could take the chance of accruing tens of thousands of dollars of medical debt.

Ramona

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Permalink Reply by beka on August 24, 2009 at 2:38pm

TRUE Ramona about Baylor...VERY TRUE...

beka

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Permalink Reply by BDrake on August 21, 2009 at 6:13pm

I was going to say that I didn't recommend Baylor, for the very reason you stated. I have no experience with the other two though. Good Luck!

~Becky

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Permalink Reply by noelv on August 21, 2009 at 6:25pm

I have nothing but praise for the staff at Columbia Presbyterian where I get treated. You can make a nice trip of it by catching a Broadway show.

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Permalink Reply by kdorff on August 22, 2009 at 3:12pm

Thanks for the warnings and comments.

To add a second question--
Can anyone tell me what I should expect to happen when I visit a movement disorder clinic for a second opinion? I'm used to meeting a neurologist, discussing one or two new drugs and possibly some tests and then seeing her again 3 or 4 months later to discuss the results and repeat the process. I'm assuming that a consultation with out of town neurologists goes a little differently. Am I likely to see more than one specialist or have more than one appointment? What happens if the neurologist wants to see, for example, an MRI that I haven't had done? (Why is it that when you finally start to feel like you've started to learn how to navigate the health system, you find a new challenge?!?)

Within the limits of safety (slow tapering with the knowledge of a current neurologist) and endurable symptoms, is better to show up on medications so that they have some sense of what medication can and can't do for you or off medications so that your symptoms aren't being covered?
-Kat

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Permalink Reply by beka on August 24, 2009 at 2:48pm

Hi -
First of all, dont let the second neuro MD assume his diagnosis based on your medical records...
Here are some questions you or anyone should ask...
-----------
Is the physician affiliated with a medical center(s) that is approved by the Joint Commission on Accreditation of Healthcare Organizations?
You can find this information on the American Board of Medical Specialties website (ABMS): www.abms.org and Specialty licensing boards: www.abms.org/member.asp.

How many patients with PD, tremor or dystonia does he/she treat on a weekly- monthly basis?
How frequently are patients with PD , tremor or dystonia are seen during an office visit?
How many Botulinun toxin sessions are performed on a weekly basis ? How long ( years ) have they been performing injections ?
What criteria do they use to select patient candidacy ?
Do they utilize functional assessment scales ?
How frequently and when ?
Do they use EMG ?
Do they make videos of you ?
What is the waiting time to get an appointment for consultation and the procedure? Weeks? Months?
What is the usual waiting time in the office before you actually see the neuro MD?
Are family members allowed to attend appointments?
Is there someone on 24-hour emergency call? How easily can you contact them?

Does the office/center carry patient education material about PD, tremor or dystonia?
Is the Patient's Bill of Rights posted and visible in the office/center?
Is there any material offered in the office about dystonia ?
About Toxin injections...?
Post inquiries on the multiple tremor, PD and dystonia Message Boards that exist online today. Many of these Boards have extensive lists of “Who is Who in Tremor, PD, Dystonia and DBS.” You may need to email others directly to inquire about available medical care in your area.

Ask family, friends, and co-workers for help. Contact your local support tremor, PD or dystonia group or State and County medical societies, Hospital referral services, other doctors or nurses and word of mouth (relatives, neighbors, co-workers). Don't be shy in asking or learning “Who is Who in trating Dystonia”.
Ask yourself “How far can I travel?” Patients with complex conditions will travel any distance to see a good doctor, if they can. Realistically, driving is very hard on some and impossible for others.
Think about what you can consistently manage.
Think about in terms of location of your programmer – you want an experienced programmer as trust and confidence are essential in this long-term relationship.

Does my insurance restrict who I can see or where? It is easier to work within your insurance guidelines than outside of your network, but consider all possible doctors, regardless of insurance.

Call to set up an appointment. Call more than one number, if possible.
Is there a fee for an interview with a doctor? Generally there is not a fee for so called no-cost interviews.

Share your goals and expectations with the staff after arriving. Sometimes meeting others in the waiting room can clue you in on the office and the quality of care being provided to patients.
Tell the receptionist what type of care you expect.



Does the physician accept your medical insurance policy? Are there any out-of-pocket expenses? The cost of DBS in the US is typically in the $75,000 range and is usually covered by health insurance.

Will you have access to your medical records including CT Scans, MRIs? Are prescriptions updated on a consistent basis?

Ask as many questions as you need. Ask to speak with another patient who is being currently treated for PD, tremor or dystonia with DBS.

Evaluate the office/center-staff:

Was the receptionist/office-center staff courteous and helpful? Was the office/center clean or cluttered? Are OSHA policies in effect?

If paperwork needs to be completed, how difficult was it? Are forms in Spanish or other language available?

Was the waiting room comfortable? Is the office-center handicapped-accessible?

Is there possible assistance with transportation to/from appointments? Is there a 24-hour appointment cancellation policy?


Take your meds as you usually would.. if you have pics or a video of yourself off meds, take it with you...

hope this helps...Anyone else...Dont be afraid to ask questions ! You are payng for their services, not the other way around...

beka

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Permalink Reply by Rebekah on August 24, 2009 at 7:51pm

What expectations and goals? I didn't know there was anything medically proactive we could do, except dbs.
Do you mean like "I prefer to avoid heavy meds?" Or " I just want to be comfortable?"
I feel so lost in dealing with all this and it seems as if everyone else is connected to information, personal support and resources i have to dig out of the mud with numb, frozen fingers.
Yes, I'm a little frustrated.

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Permalink Reply by kdorff on August 26, 2009 at 7:21pm

Beka-
Thanks for your advice; I guess it's always good to be reminded of what to look for in a neurologist, and now that I reread my last post, I realize I should have been more clear. Although I am shopping around for a second opinion, I am not shopping around for a new or local neurologist. I have worked with a team of two very competent neurologists. The senior of the two diagnosed me with dystonia in one appointment and two appointments later looked directly at me and said something along the lines of, "This isn't dystonia. I don't know what it is." and then (unprompted) added "You know you could always ask for a second opinion elsewhere." Since the other neurologist has helped me work through a couple more of the drugs and tests that are long shots for a dystonia patient (for example, some of the epilepsy drugs that help a very small percentage of the dystonia population.)

At this point it's time for me to head to one of the big movement disorder clinics to see if anyone has a name to put to whatever is going wrong. Whether or not they do, I expect to continue with my current neurologists for long term treatment. What I was trying to ask about above is the practicalities involved in traveling elsewhere for a diagnosis. (I figure that enough dystonia patients go to hell and back for a diagnosis that someone must have experience.) Thus although I curse the chairs in my current neurologists' office while I wait for appointments, I am perfectly willing to live with another set of awful furniture long enough to meet with a good diagnostician in the upcoming months ;P ...your point about asking questions is a good one though.
Thanks for trying to help.
-Kat

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