Would a neurologist actually not know what dysreflexia is???

[JCampbell]

I went to my neuro who manages my baclofen pump to discuss the first two bouts of AD I've ever had (in 10 years as a quad) last week, in hopes of getting an rx before my next bowel program that night. Anyway, when I told him what happened,he said something peculiar. He said, "with most my spinal cord patients the worry is LOW blood pressure with autonomic dysreflexia." And he wasn't referring to after the AD passes, he meant AD = low blood pressure.

Now, I'm no neurologist, but I certainly have been a quad longer than he ever has, and since day one in rehab, the terror of dysreflexia and its symptoms and treatment has been stressed over and over by neurologists and therapists. Outside the medical setting, probably no support group I ever attended went without AD being mentioned. Every friend I have who's a quad has had an episode at least once, and the Reeve Foundation's AD info cards lay it out as I've always heard it - dysreflexia equals dangerously high blood pressure. As little as the ER knew about AD, they at least knew high blood pressure was a symptom.

I told him my fear was a possible stroke. His response - "you're more likely to have a stroke by your BP dropping!" I told him I had a friend who had a stroke. He said something like, "I tend to take anecdotal evidence with a grain of salt." I couldn't believe what I was hearing.

So, I have to ask you the members, how could a neurologist who's been practicing over 15 years think that dysreflexia is low blood pressure? Is there some other disorder he could be confusing it with? I'm really hoping there's a good explanation, because having a competent neurologist is kind of a quirk of mine.

Anyway, he wrote me an RX for some Xanax and nitro paste. Fortunately I haven't had any problems since the first two bouts. I think a UTI was causing it... I guess... obviously it wasn't like I could ask my neurologist!

[gjnl]

Xanax is used to treat panic/anxiety disorders. Nitropaste is used to lower blood pressure. I'd look for another neurologist or have another discussion with the one you have about the obvious inconsistencies in what he said and what he prescribed.

All the best,
GJ

[SCI-Nurse]

Yes, it is possible. Many neurologists actually know little about the consequences of SCI. Their expertise is in diagnosing neurologic disease, and rarely in treatment of the person long term with neurologic problems. I think he may not have know what autonomic dysreflexia was, but was trying to cover up by referring to autonomic DYSFUNCTION which occurs in people with SCI (and many other CNS diseases) and results in orthostatic hypotension (low blood pressure when you sit or stand up). And yes, you can have a "watershed" stroke from a blood pressure that is too low.

In rehab, did you really have neurologists as your physicians or physiatrists? The latter are much more expert in management of the consequences of SCI and in rehabilitation.

Regardless, if this provider is your primary care giver, I would either expect him to learn about AD (provide him with the Consortium for Spinal Cord Medicine clinical practice guideline on AD; available free at the PVA.org website), or I would look for a different provider. If not your primary provider, why are you seeing a neurologist???

(KLD)

[surbondo]

any military vets out there. my doc has no idea.

[SCI-Nurse]

any military vets out there. my doc has no idea.

If you are getting your care through the VA, you should be going to a VA SCI Center or hub SCI clinic for your care. All of these teams of health care professionals are required to have training, experience, and expertise in SCI care, including AD management. At our center, we also make sure we have educated other key staff outside of the center about AD. This includes the staff in the emergency room, OR, special procedures center, and ICU. If you are not getting your care at a SCI clinic, you need to ask to do so. It is your right as a SCI Veteran.

(KLD)

[surbondo]

oops sorry, I got a bit confused, been searching the forum a lot today, looking for idea's for my situation i am in, getting kinda flustered and been reading peoples posts, a lot of them. as you can see from my post: count I don't like to get involved, sorry, please disregard. thankz (in my own defense last year i had to explain to my doctor what neuropathic pain was, then sent to the local expert who then tried to kill me ) please don't assume because i am a veteran i have rights. I do love this forum, about the only help i have had. thankz.

[User Name]

Regardless, if this provider is your primary care giver, I would either expect him to learn about...

I know I'm late to this conversation, but I wanted to comment about this.

You would hope this would be something any doctor would do for a patient, but in my experience, nope. I had multiple doctors tell me they just didn't know what to do with someone who had an SCI. I would try asking specific questions and they would tell me they didn't know. Which, is fine, but you'd think they'd try to find the answer. Again, nope.

I even had a neurologist tell me that I had to be imagining things regarding my healing/progress, even when I was showing him what I was talking about right then and there. It's insanely frustrating.

So, yes, I believe it's 100% possible your doctor didn't know about something, and I 100% agree with SCI-Nurse that you should find a new doctor if he isn't willing to learn.

I hope this has since been taken care, but good luck in general. It's a jungle out there, Grandmaster Flash.

[arndog]

It is completely possible that the Neurologist had not come across autonomic dysreflexia - it doesn't mean that he/she is a dolt, you have to help educate your doctors about SCI, unfortunately. Although it is an all pervasive aspect of our world, it isn't for the doctors - even if they are Physiatrists unless they work specifically with SCI. I figure it is, unfortunately, my job or at least in my best interest to educate them about SCI - that goes for Urologists, Spine Surgeons - folks you would think would know all about the manifestations of SCI.

Hopefully, once they are familiar with it they will catch it on the next SCI patient they have.
You have to be your own best advocate while navigating the healthcare world unfortunately.

[Freespin 71]

I have found some neurologist don't know the difference between involentery movement and a spasam..

[dejerine]

It is also possible for a neurologist not to know about Central Pain. Adams and Victor, the leading neurology text does not (last edition I read) mention Central Pain by name. Why should a neurologist think it exists. If it is not in the "bible" of neurology, it is heresy to suggest that it exists. As SCI Nurse says, your physical medicine specialist is much more likely to know something about Central Pain.

It is also possible for a neurologist not to know how to do a physical exam on partially injured. You can read debates all the time on how to do Babinski's and other tests. With Babinski the great toe is supposed to go up or down when stroking the sole of the foot. But what about the great toe which goes neither up nor down. Who knows anything about that, but this is actually the case in many partially injured patients.

Who knows the proper way to do a Hoffman test, for upper motor neuron damage. (Flick the middle finger upward and watch for a downward motion of the index finger) Easy with the completely injured, difficult for the partially injured.

Watch the test for loss of vibratory sense. Long after the sense of vibration has gone, the examiner may be asking "Can you feel this?" and patient, who can still somehow feel the tuning fork pushing into the flesh but has lost the feeling of vibration, may answer "Yes". Into the computer goes the entry "Normal vibratory sense".

The person who experiences a really good physical exam should feel fortunate and grateful, also unique, in a world of fast medicine.
The problem is time. They actually know how to do this testing, but they do not have time to do it right. The old Johns Hopkins idea from Dr. Osler that if you want to know what is wrong with your patient, you must listen to them is going out the window with managed care. Unfortunately, there is NOT an app for that.

The emphasis now is on electronic medical records and typically the doc has to spend more time on the computer typing than listening to the patient. This despite the lack of any objective evidence at all that electronic medical records and all the entries actually benefit patient care or medical outcome.

This obsession with records is due to regulation and the regulators like their jobs and software companies have convinced desk people that they must buy their product. Medicine gets more expensive but doctor/patient time is growing ever scarcer. Big brother is definitely calling the shots now in medicine.

Fully injured patients can be tested by nearly any neurologist, but those with partial injury may find that the doc cannot or does not test them well. For example, in sensory testing, an adequate evaluation would include both von Frey hairs as well as temperature testing with test tubes or probes with various temperatures. Try finding anyone anywhere who has actually had this testing, yet the record may state that the person is normal to touch and temperature. This is an unsupported and baseless opinion until it is actually tested.

Managed care is making time with the patient rare as hens' teeth. When a doctor types on the computer with the patient in the same room, this does not count as time with the patient. Those with a condition requiring careful physical exam, such as with Central Pain, and a good history, are out of luck in today's fast mediciine world. Just as fast food may not be the best for your health, fast medicine may not be the best either.

Neither the patient nor the doctor likes this arrangement, but if anyone is going to get paid, that is how the cookie crumbles, thanks to intrusion by regulators and third party payers. Will medicine ever return to an interaction between doctor and patient? Hard to say. With those big million dollar MRI machines, and magnificent devices for robotic surgery, should we bother to pay doctors for clinical skills and the time to use them? Five thousand dollars for an MRI, but a couple hundred bucks for the doc with experience enough to know what the patient is saying.

Clinical skills are a gift the doctor gives to you. He is certainly not going to get paid for it.

[craig]

I am sorry it so hard to get a good neurologist however I used dr. Martinez at the Univ/Miami and he is pretty good
my name is craig I am a 34 post c7 SCI and a 59 yr old man so I have some input on this subject. I just started using nitro pills when my dysreflexia hits so I have whole new world. I was using 2% cream for several years but I had a blood clot in my lungs and after that I was given nitro pills plus some blood thinners I have used the nitro 2 times in the last 6 months...sucks....2 months before this I was hospitalized for dysreflexia.
I'm all screwed up on pain killers so I don't know how much sence...........I just do not want to die, yet.

[xsfxsf]

I've dealt with some intelligent, skilled, caring physicians over the years. But I've also dealt with specialists who were obviously incompetent. I met one neurologist who barely seemed to understand the basics of spinal cord injury at all. But she understood billing, that's for sure, billing Medicare $400 for a useless consult, and referring me for a fairly pointless MRI.

I do wish the medical profession instituted stricter quality control, e.g. through stricter certification tests, than they have now. There are some doctors out there that definitely shouldn't have licenses.

I'm speculating here but perhaps some neurologists mainly deal with factitious, litigation-oriented disorders. Some neurologists just aren't prepared for complex cases like SCI. I don't know, I just wish licensing and certification tests for specialists were stricter than they are now.

[ketamine kitty]

I went to a neurologist who stated that he was not SCI oriented but I was presenting new symptoms and my team wanted a full neuro work up to eliminate any organic possibilities such as MS. Locally he's considered one of the best and seemed to deserve the reputation but was up front about his lack of SCI in-depth knowledge. So it doesn't surprise me but I've found they tell me when they are out of their comfort level.

ket

[~Lin]

My main disability is a rare disorder, and I expect Drs to not be familiar with it. But nothing pisses me off more than a Dr who claims to be familiar with it or know what he's talking about when its clear he doesn't. One time in the ER my boyfriend snapped at the Dr "why don't you go google Ehlers Danlos Syndrome and then come back and talk to us" because the Dr was being such an ass, he angrily replied that he knew all about it... And then followed that up with a few questions and statements that showed he had no idea what he was talking about. Its downright scary. Think about all the newly diagnosed/injured people who may be being told dangerously incorrect info by Drs who refuse to admit when they don't know something...

And I also thought he was probably mixing up autonomic dysfunction with autonomic dysreflexia. I have autonomic dysfunction.

[dejerine]

I am sorry you have not had a good experience with certain neurologists. It is not all their fault as I hope the following may point out.

Please permit me a comment on what would ensure better education of neurologists in issues relating to Central Pain. We could of course require that Adams and Victor, the bible of neurology, devote a large section to Central Pain. This would be a start. I would suggest that the remedy mentioned by some of greater regulation is theoretically a good plan, but education is where we need the money. Regulators know nothing about Central Pain. They cannot help us very much.

The realities of regulation today seem to indicate that like all government regulation, there is a tendency to spend a lot of money without equivalent result. The burden of education is likely to rest and remain on the schools and residency programs which educate our doctors, not on the regulators, who are not inherently designed to educate, but rather to attempt to determine who has been educated.

Your post seems to reflect the common misconception of the public that it is licensing and regulation which guarantee competency. In my own experience, that is no longer the case, if it was ever in fact true. I would like to make a case for more money for quality residency programs, with better pay for faculty and less requirement that faculty be part of some HMO type arrangement which is more profitable for the hospital administrators. I would also like to see the rotating internship year reinstituted prior to residency, to give docs an exposure to various disciplines they will need in their residency. I would also like to see the fellowship programs brought back.


The regulators have combined with administrators to create a problem, not a solution. The extreme salaries of regulators, reaching a million dollars a year just to administer testing, and the financial interests of test designers, whose competency in test design may be owed to psychology and not to medical training, has created a bigtime industry.

Medicare has signed on to pay less money to those who do not wish to participate in the type of testing that is now going on. A significant trend is "Practice Modules" which involves having patients complete questionnaires. These are not presently designed to educate the doctor so much as to analyze him. So called Maintenance of Certification includes things such as "practice modules" which requires intrusion on patient privacy and surveys, which may be fine in marketing venues, but really have nothing to do with medical expertise.

Time consuming handing out of questionnaires and testing for practice modules may actually interfere with the time needed with the patient or for studying medical journals.

My point is that regulators do not guarantee competency. The main factor is in selection of good individuals for training and more importantly high quality education during residency, with time for fellowship where indicated. The medical fellowship was done away with under Richard Nixon in favor of what was called "regional medical programs". These were eight divisions across the country who were supposed to educate doctors about the leading causes of death, which were heart disease, cancer and stroke. After five or six years when it was evident regional medial programs did no good, the whole program was defunded. However, congress did not reinstitute funding for fellowships, which was the traditional way for smart residents to get further training and do research. The Fellows hanging around the department always inspired and educated the residents. Today, the fellows are gone and the faculty are burdened. Our residents are at a disadvantage.

Today, the regulators are not better. They represent an even more burdensome thing for docs who wish to practice medicine. The money is used by states to fund various programs, but most such programs are not educational in nature. Perhaps subspecialization can help. Yet, one suspects that training on pain must begin clear back in the early years of medical school and not be relegated to the narrow education of a few pain specialists, not that they do not perform a valuable service. As to solving pain, we need money to go to research institutions and to NIH/NIDCR for the hard work required. It is that simple.

A well trained resident has no problem with licensing. If he is tested in his/her field, he should have little problem with exams. What he needs is more time to stay current, not more papers to fill out.

How to bring down costs of medicine? Get rid of excess administrators. When I graduated, administration took 2% of the medical dollar. Today, administrative costs are around 40%. The Affordable Care Act required that HMO's and insurers not take more than 20% or a penalty had to be paid. The regulators apparently did not cut back on administrative salaries. Instead they just paid the penalty. A solution to education will not come from administrators. It will come from the faculty who train our doctors and residents. If we require them to make money, they will not have time for teaching.

Our money today can buy us marvelous buildings with marble floors and expensive art displays on the walls, with administrators with modern offices and marketing ads on the radio touting the "top" status of some hospital. What it cannot buy us sufficiently is TIME with our doctors. We are processed, coded, and entered, but not always cared for in an intelligent way. For that, you need time. The face of medicine today is gorgeous, but the head behind the face is frantic, tired, and just trying to figure out what the system is going to do next.