neurologists

[Guest guest]

Here's a cut and paste paragraph from a great arctile Lou sent to the group, maybe this verbage could help? I'll attach the link to the entire article too. Thanks Lou!

The membranous bones of the calvarium grow and take shape in response to pressures; they have little intrinsic programming to develop into predetermined forms. The most important pressure is the internal pressure applied by the growing brain. The pressure of the growing brain causes tension in the overlying calvarium that results in the deposition of new bone along the sutures and over the external surface of the skull. Furthermore, the pulsations of the growing brain cause resorption of bone along the internal surface of the skull. The growth of the brain is the principal determinant of the size and shape of the calvarium. In the absence of pathological constraints, the calvarium expands diffusely into a normal ellipsoidal shape. If the growth of the calvarium is restricted in a certain dimension by one of the processes described below, the brain will push outward in the direction of least resistance and cause one of a relatively small set of distinctive patterns of calvarial deformity

http://www.drexel.edu/med/neurosurgery/ped/heads.article.htm

[Guest guest]

Does someone have a link where there is a contact list of many

neurologists? I would like to send out emails asking about (if,

how?) a brain grows into a predetermined shape since my neurologist

is plagio and band friendly but thinks that my child's head shape

will correct on its own. I just want to see what other neuros say

about this. Hope I am making sense

Thanks, Natasha

[Guest guest]

Natasha:

Do you mean a neurologist or a neurosurgeon?? Most of us have been

referred to a ped. neurosurgeon, the 2 are often confused.

Either way, I don't have a contact list. I like your idea though.

Debbie Abby's mom DOCGrad

MI

> Does someone have a link where there is a contact list of many

> neurologists? I would like to send out emails asking about (if,

> how?) a brain grows into a predetermined shape since my neurologist

> is plagio and band friendly but thinks that my child's head shape

> will correct on its own. I just want to see what other neuros say

> about this. Hope I am making sense

> Thanks, Natasha

[Guest guest]

Either one, I have seen a neurosurgeon. I would just like some complete explanations about brain growth. Mine is always in surgery

"debbieandabby <dj2kirby@...>" <dj2kirby@...> wrote:

Natasha:Do you mean a neurologist or a neurosurgeon?? Most of us have beenreferred to a ped. neurosurgeon, the 2 are often confused.Either way, I don't have a contact list. I like your idea though.Debbie Abby's mom DOCGradMI--- In Plagiocephaly , "Natasha Gubash "wrote:> Does someone have a link where there is a contact list of many > neurologists? I would like to send out emails asking about (if, > how?) a brain grows into a predetermined shape since my neurologist > is plagio and band friendly but thinks that my child's head shape > will correct on its own. I just want to see what other neuros say > about this. Hope I am making sense > Thanks, NatashaFor more plagio info

[Guest guest]

Thanks You rock!

Debbie

> Here's a cut and paste paragraph from a great arctile Lou sent to

the group,

> maybe this verbage could help? I'll attach the link to the entire

article

> too. Thanks Lou!

>

>

> The membranous bones of the calvarium grow and take shape in

response to

> pressures; they have little intrinsic programming to develop into

> predetermined forms. The most important pressure is the internal

pressure

> applied by the growing brain. The pressure of the growing brain causes

> tension in the overlying calvarium that results in the deposition of

new bone

> along the sutures and over the external surface of the skull.

Furthermore,

> the pulsations of the growing brain cause resorption of bone along the

> internal surface of the skull. The growth of the brain is the principal

> determinant of the size and shape of the calvarium. In the absence of

> pathological constraints, the calvarium expands diffusely into a normal

> ellipsoidal shape. If the growth of the calvarium is restricted in a

certain

> dimension by one of the processes described below, the brain will push

> outward in the direction of least resistance and cause one of a

relatively

> small set of distinctive patterns of calvarial deformity

>

>

> <A

HREF= " http://www.drexel.edu/med/neurosurgery/ped/heads.article.htm " >http://www.d\

rexel.edu/med/neurosurgery/ped/heads.article.htm</A>

[Guest guest]

I am so glad this is article is of good use. Lou

Re: neurologists

Here's a cut and paste paragraph from a great arctile Lou sent to the group, maybe this verbage could help? I'll attach the link to the entire article too. Thanks Lou!The membranous bones of the calvarium grow and take shape in response to pressures; they have little intrinsic programming to develop into predetermined forms. The most important pressure is the internal pressure applied by the growing brain. The pressure of the growing brain causes tension in the overlying calvarium that results in the deposition of new bone along the sutures and over the external surface of the skull. Furthermore, the pulsations of the growing brain cause resorption of bone along the internal surface of the skull. The growth of the brain is the principal determinant of the size and shape of the calvarium. In the absence of pathological constraints, the calvarium expands diffusely into a normal ellipsoidal shape. If the growth of the calvarium is restricted in a certain dimension by one of the processes described below, the brain will push outward in the direction of least resistance and cause one of a relatively small set of distinctive patterns of calvarial deformityhttp://www.drexel.edu/med/neurosurgery/ped/heads.article.htm For more plagio info

[Guest guest]

Beata,

Because it is not a priority. And there is not cure..many other diseases that

have more impotence to them. I can't find a doc that is remotely interested!

Geri

[Guest guest]

Actually I disagree about educating medical professionals. How can a neurologist

finish med school if he/she have not learned about CMT?The disease is not that

rare!! I can understand if a general practitioner is unaware of this disease,

but a neurologist??? When I meet a neurologist that I need to explain my

condition to, I just think of him/her as " ignorant " or " bad doctor " . If the

neurologist is very young, I might give them a chance, but otherwise: I will

not visit them again! 

I have done it once, gone back to a doctor who said he would find out more about

this disease, but of course he had not done that till next time. So the easiest

thing to do is to visit doctors who know some about CMT, or at least some about

how nerves function. No idea how some doctors can actually graduate and become

doctors at all. They would be a lot better car mechanics or even

cleaners. Maybe it's the money.If you got it,you can become a doctor. Without,

you

might end up cleaning the hospital floors.

 (Yes, I am angry with medical " professionals " who are NOT professionals.) More

and more of them, I think, and less of those who have real knowledge and

interest in patients.)

Beata

[Guest guest]

Beata,

I have had both younger and older neurologists tell me they heard very little

about CMT during medical school. The field of Neurology is so wide - like

Epilepsy, Fredrich's Ataxia, Alzheimers, MS, MD, DMD, ALA, well take a look at

this list:

http://en.wikipedia.org/wiki/List_of_neurological_disorders

So I don't expect every neurologist is going to know all about CMT. There are

but maybe 1 or 2 handfuls of them that know it and most are researchers.

Orthopedists, on the other hand, in my experience, have been far more

knowledgeable about CMT in a private practice for me. I was diagnosed by one way

back in 1962. In my mid-teens, my parents heard of a good neurologist from one

of the staff at camp (who had a neuro disease). So, I saw him once a year for

years. I must have walked up and down hallways of ortho and neuro docs for

years, then given either physical therapy, a medication or supplement.

According to U.S. National Library of Medicine National Institutes of Health pub

med search I found only 4 articles listed for CMT, none of which are available

in abstract form. My life living with uncertaintly of CMT was mostly trial and

error on the part of medicine. By the time I was 21, I had every neurological

test possible, including brain waves, and spinal tap.

It wasn't until I lived in Wyoming in the 1980s and all of a sudden had enormous

fatigue (like needing to go back to sleep by 2 pm) I sought a neurologist who

knew enough about my history and current situation (I thought my CMT was worse

because of the enormous fatigue) he assured me this fatigue was NOT CMT and WAS

ALTITUDE SICKNESS, which after 3-4 months would go away. Living at a higher

altitude, as opposed to sea level made my lungs work harder - less oxygen at

high altitudes - and that's why the enormous fatigue.

Sure enough, after several months I was back to my Type A self and we found a

medication that worked very well for my only complaint - tremors, which are

common in CMT and some other syndromes.

Back to my teen years, my neuro and ortho shared paper files with my internist,

so we were all on the same page - keeping me on my feet and healthy. I'm still

there today. While my current internist doesn't deeply know about CMT, he sure

knows more than most because I have educated him. He once remarked " I learn more

from my patients than I ever did in medical school " . So I kept on with his

education (lol) and one day he said " you know, I feel over my head with all this

CMT information you give me " . Walking out of his office I just started laughing.

My current ortho and neuro are about 5 years older than I am (57) and have been

in private practice for well over 20 years or so. They both understand CMT, plus

my entire medical history, share records and files electronically now for the

best in patient care. The internist is still on my payroll (lol) but he's an

internist - that's his area of expertise. I see him only 1 or 2X a year, for a

check-in (like 'how are you doing', i.e., exercise, weight, blood tests, the

normal stuff. He is a good diagnostican and nailed my gall bladder pain on the

head early enough to get me to surgery to have it removed. I don't give him

anymore CMT info, but it's all in my file.

My current neurologist is actually a Pediatric Neurologist, but was recommended

by my ortho. He's a good guy, knows CMT among other syndromes, and we talk

neurology and genetics and research news when I see him once a year. I have to

say it is a pleasure to go to the appointment because there's so much happening

with CMT research that we're on the same page. He agrees with what a neuro told

me when I was about 16 - " you're writing your own history " (by living with CMT)

Last time I saw him he said " you're doing so well, I don't need to see you,

unless you have a problem " .

Medical school is intense, residencies, fellowships, academic or private

practice, it's all filled with knowledge specific subjects. CMT may be more

common than we know, but it is not as universally recognizable as ALS for

example. It will be soon - especially with the breakthrough high thoroughput

screening (HTS) that the STAR project presents and the national awareness

campaign.

More and more is being revealed. It was only about 1990 or 1991 when the genetic

mutation for CMTA was discovered.Here we are some 20 years later, with about

2680 published articles indexed at the U.S. National Library of Medicine

National Institutes of Health. And there have been 2 human CMT arrestment

trials, NT-3 and the ongoing Ascorbic Acid ones. CMT disease research is growing

more and more complex in all areas. So neuros are only about 20 years into this

disorder. That is a very short period of time.

Believe in yourself, strive to be the best YOU can be, exercise, eat heart

healthy, and if a neuro doesn't know about CMT, educate. If an internist or

other doc doesn't know, educate. You may be helping others with CMT and not know

it.

Gretchen

>

> Actually I disagree about educating medical professionals. How can a

neurologist finish med school if he/she have not learned about CMT?The

disease is not that rare!! I can understand if a general practitioner is unaware

of this disease, but a neurologist??? When I meet a neurologist that I need to

explain my condition to, I just think of him/her as " ignorant " or " bad

doctor " . If the neurologist is very young, I might give them a chance,

but otherwise: I will not visit them again! 

>

> I have done it once, gone back to a doctor who said he would find out more

about this disease, but of course he had not done that till next time. So the

easiest thing to do is to visit doctors who know some about CMT, or at least

some about how nerves function. No idea how some doctors can actually graduate

and become doctors at all. They would be a lot better car mechanics or even

cleaners. Maybe it's the money.If you got it,you can become a doctor. Without,

you

> might end up cleaning the hospital floors.

>

>  (Yes, I am angry with medical " professionals " who are NOT professionals.)

More and more of them, I think, and less of those who have real knowledge and

interest in patients.)

>

> Beata

>

>

[Guest guest]

The experience that I had was that the first people who could actually tell me

that something was very wrong although they didn't know exactly what, were 2

different chiropractors. All the general practioner MD's that I've ever seen

never saw anything significant that indicated to them to be a major problem.

One even told me he thought maybe I had a side effect from a polio vaccine but

that was all the further he took it. But the neurologist I had through MDA knew

his stuff as did the physical therapists that worked with him. Even the eye

doctor that I went to was well knowledgeable about it and how it could affect

the eyes and eye muscles.

[Guest guest]

Hi Gretchen,

This is my first post!

I agree with your post on neurologists. My podiatrist referred me to

a colleague of his who was a neurologist. This neurologist did my

first EMG and diagnosed me with CMT. He was truthful with me and

told me this was not his specialty in neurology and referred me to

another neurologist in the building. The 2nd neurologist was a

little more familiar with CMT, and would relay information to me he

learned from a patient with CMT in his practice. Just like we share

information in forums. As my CMT progressed, I decided I wanted to

find a neurologist with more training in this area.

I talked with my insurance company about seeing someone out of my HMO in a

bigger city. They did research to find someone in the HMO with CMT experience

and arranged to have my chart looked at by this chief

neurologist. The insurance company got back to me within a couple of weeks to

tell me the neurologist was referring me to a new

neurologist who would be joining their staff in a couple of weeks.

After seeing this new neurologist, I found out he had done a

fellowship with the very doctors I had wanted to see in the bigger

city. He did a new EMG/NCV and told me - how many of these

he had performed during his fellowship which was a very high number.

The good news is my new neurologist works in the specialty of

Muscular Dystrophy, ALS, and CMT and worked with some outstanding

doctors to gain his knowledge. The new neurologist also told me if I was not

happy with his work-up he would refer me to a doctor he had

worked with during his fellowship. I told him I was happy with him

and that was not necessary.

The challenge is finding a doctor who specializes in the area of neurology that

CMT falls under. I have a great insurance company apparently because they have

people on staff who are willing to help and listen and went out of their way to

help me. Had they not been able to find an appropriate neurologist for me, they

would have referred me to the specialist I wanted to see, but they saved me a 3

hour drive by finding one only 45 minutes away.

Bonnie

[Guest guest]

Well, I can see this from both sides -- actually having been on both sides. I

have CMT and I am a doctor. As many of you know, I only got diagnosed a few

years ago. I graduated med school in '95. So how did I go all the way through

med school and not have a clue I had CMT? I can tell you the only thing I

remember being taught about CMT was an example of a " Charcot Joint " which was a

picture of a horribly mishapen ankle that was the result of someone with " a

neuropathy " that had broken the ankle repeatedly because she couldn't feel her

feet. It never occured to me that that could be describing me even though I'd

had 2 ankle surgeries already. And that was pretty much it. I don't believe they

taught us anything more than that on this subject.

Now, I went into Pathology and Transfusion Medicine from there, so no learning

oportunity presented again, until I discovered my own diagnosis. The thing is,

there is just too much information to be able to get it all out there. In med

school you learn the basics. Then you fine tune and specialize in your area. For

neurologists and orthopedists it would depend on where their residency training

happened as to what they were exposed to.

I can tell you, as a Blood Banker it is frustrating to me that other doctors

basically know that you can transfuse O blood to an A patient, but never

transfuse A blood to an O patient (but not why), and you can get bad diseases

from blood. But, I think of it as my job security to be able to advise the other

docs on blood when it's needed. So, if you can find someone who's taken a

special interest in hereditary neuropathy, that's the best person for you.

Holli

>