MRI

[Guest guest]

>>I think I should get the gold star for the day!!!

I think you deserve a Purple Heart for Valor under fire! How scary! Good

luck Sherry, and please be careful. Let us know how the tests turn out.

Liz G.

[Guest guest]

Had the same thing done and i have a variant of a Empty Sella.

I read somewhere that 1/4 of the population has some type of growth on the

pituitary and

that most are nothing and do nothing. The most common is the prolactin producing

type

and can be treated with meds. If there is surgery, it is done through the nose,

mostly.

Sounds like the doc is doing the right test. Could you post your blood tests

results with

ranges and the lab that did the test, and some of your stats.

> Next tuesday I will be having an MRI of my brain with contrast

> specifically looking at the pituitary functions.........My

> testosterone is very low. How often do the find benign tumors in

> the brain and what other ways of treating them other than surgery?

[Guest guest]

On Fri, 03 Sep 2004 17:39:02 -0000, you wrote:

>Next tuesday I will be having an MRI of my brain with contrast

>specifically looking at the pituitary functions.........My

>testosterone is very low. How often do the find benign tumors in

>the brain and what other ways of treating them other than surgery?

Try to relax some. this is scary stuff. A lot of us have been there.

the words brain and tumor together generate a lot of fear. Try not to

get too worked up waiting for the MRI or the results. I've read that

something like 25% of autopsies find small pituitary tumors, so

they're quite normal. They're only a problem if the are malignant

which is quite quite rare or if they disrupt pituitary function which

is no too bad if they're benign. Excepting prolactinoma (treated

with medicine) and malignant ones, (again quite rare) most are just

watched and the treatment begins with trying to deal with the hormones

situation they cause. Most of these lesions are quite small 1

millimeter or so. They're just watched.

Most likely you'll need some testosterone therapy and no surgery.

Don't freak yourself out before the tests with too much information

and second guessing. Try to wait for the information. Not an easy job

I know. For me by the time they looked for pituitary tumors they had

already looked for bone cancer and liver cancer and I'd convinced

myself one of them would have to come back positive. I appreciate the

anxiety you're in.

But they found nothing for me, but a partially empty sella (shrinking

pituitary) and T treatment was such a great change in my life. It

doesn't seem like it with these scary tests, but you're on the road to

getting better - and its a great positive change.

Hang in there.

- - - -

Just another albino black sheep

[Guest guest]

On Fri, 3 Sep 2004 12:59:59 -0700 (PDT), you wrote:

>Has the Dr also run a complete blood test. As Theta

>said there is about 25% of the population that has

>these tumors and they never cause any problem. Then

>there are the few of us that it causes us a little

>hell. They will do the MRI and then come in and give

>you a shot so they can see the contrast and complete

>the MRI. Is your Prloactin elevated? This is usually

>the reason for the MRI. I have a small 5mm tumor. It

>is in the back of the pituitary and causes elevated

>PRL in me. Most of these are controled with meds. Let

>us know what your blood test show and how the MRI

>comes out.

Even without high prolactin levels its a normal part of diagnosing the

cause for secondary (pituitary/hypothalmioc) hypo-gonadism.

- - - -

Just another albino black sheep

[Guest guest]

On Fri, 3 Sep 2004 13:05:10 -0700 (PDT), you wrote:

>I will let you know as soon as I get the results. I have an appointment with

the doc a week after the test. When I say the endocrinologist on the first

visit, based on the intial blood work done by my internist, she felt that I have

had hypogonadism for 7-8 years in her opinion. Can any of you tell me how your

wives, girlfriends etc. handle a mans lack of interest in sex? It has really

damaged my marriage, I do not know if my wife and I can ever get close again

since I have pushed her away for the last 4 years! I am glad that I am

finding out now that I have a problem but that doesn't change my wifes female

desires and needs for intimacy?

There's hope. T brought back my interest tremendously. Some of the

guidelines on T therapy suggest counseling for the wife to deal with

the new constant sexual interest of their partner. I imagine that

will be a pleasant change.

The big change for me and my wife was the low energy and low ambition

from low T led to a lot of resentment from her for my failure to get

things done. Work around the house, and repairs fell behind. She

thought I was lazy and worthless and resented me for it.

When the energy came back it still took some time to work through the

resentment issues and anger. They'd accumulated over years and they

don't just evaporate on feeling better. My wife had to learn

emotionally that this period was an illness and medical condition -

not a moral failing or weakness. She could grasp it intellectually

some times, but couldn't let go of the anger over lost time, etc. It

took some work. And the occasional therapy hiccup or set back (high

E2 for example) could bring a lot of the buried anger right back.

There's also some issues about the changes not all coming at once.

I've been on T for about two years now, and in the beginning there

were some quick noticeable changes. But this led to the hope from her

(and me) that everything would get better immediately. And some of it

takes time. Finding the right T levels and E2 levels for example. And

then the physiology can take months to get where it should be.

Anyway I think marriage counseling and maybe personal counseling as

therapy starts (or before) helps deal with a lot of strange issues

from this condition. But trust me - you're on the road to a better

life now that they know you have low T. Now it's just a matter of

time and adjustment.

Keep in touch here. There's over 1,000 guys like you here (and some

wives and partners posting too!) . They're all here to help.

[Guest guest]

,

You might not have anything to worry about. I just got my results

with no problems. The thing that gets me mad; is when the MRI lab

will tell you that they will have the reults in 2 days to your PCP

and then I don't hear anything for over a week. So make sure you

call your Dr to find out the results. A lot of the time, they won't

call you unless they find something wrong.

Hoping for the best,

Kenny

[Guest guest]

I have also " heard " that an MRI could be used to diagnose

Asperger's. My mom saw an " expert " on the Dr. Phil show who

apparently made some misleading comments about this.

My son is 8 and was just diagnosed with Asperger's and ADD. His

neurologist ordered an MRI to rule out any possible physical

abnormalities in the structure and/or function of his brain. It came

out normal.

So basically, it did nothing to help us validate the diagnosis of

Asperger's. A note of caution to other parents though- the test was

a nightmare for both of us! My son had to put on hospital pajamas

beforehand and had a complete kicking, flailing, screaming meltdown

because the pajamas had Tweety Bird on them. Then, he didn't want to

drink the Versed (mild sedative), that was another meltdown. Getting

the IV started was actually the easiest thing about it because of the

Versed and the wonderful nurses there(he is extremely needle-phobic

and sensitive to pain).

They put him in deep sedation, which freaked me out completely and

after he woke up (thank God) he was very irritable. He had his final

meltdown when it was time to go home because he didn't want to ride

in a wheelchair (hospital policy). I had to ride in the wheelchair

with him in my lap, physically restraining him about halfway to the

car.

Although it was extremely stressful, I am glad that we had it done so

that everything else has been ruled out.

Hope that this helps someone out there. If anyone would like to

contact me and talk some more about the issues we have with our

Asperger's kids, my email is bergmcj@....

[Guest guest]

On Mar 9, 2006, at 3:28 AM, christory12 wrote:

> I have also " heard " that an MRI could be used to diagnose

> Asperger's. My mom saw an " expert " on the Dr. Phil show who

> apparently made some misleading comments about this.

I try not to get medical advice from Oprah or Dr. Phil.

It's sensationalist entertainment.

> A note of caution to other parents though- the test was

> a nightmare for both of us! My son had to put on hospital pajamas

> beforehand and had a complete kicking, flailing, screaming meltdown

> because the pajamas had Tweety Bird on them. Then, he didn't want to

> drink the Versed (mild sedative), that was another meltdown. Getting

> the IV started was actually the easiest thing about it because of the

> Versed and the wonderful nurses there(he is extremely needle-phobic

> and sensitive to pain).

OH ya, the IV! When I had my MRI done, I already had an IV, so they

didn't have to start another one. But the stuff they injected at

the end

to get contrast burned. The IV I had was pumping me with fluids, and

by the end of the *hour* I was on the table, I really had to wheel

pretty

fast to the restroom. Hard table, full bladder, unable to move.

Not a good combo.

Jackie

[Guest guest]

That Dr. Phil show on Asperger's was extremely one-sided, and imo,

misleading. The brainscan was done by a company that uses the brainscan

in ways that weren't clear, nor did they ever discuss cost. In fact, I

don't remember any other treatment at all actually being mentioned, just

that help was available once you got the scan done. (The pictures they

showed were used to compare an asperger's brain to that of a NT person

-- it did show differences but nothing was really clarified.) That show

did such a disservice to those of us dealing with ASD children who are

aggressive -- and those whose children are not. My child is an

aggressive one and has horrific tantrums, but he's also 5 and we've got

a lot of time to work on the behaviors. The show didn't explain that not

all ASD children get that way, and that tantruming is but one symptom or

problem with ASD children. I keep waiting for a better show on it, one

that's fair and does all sides, and while I enjoy watching Dr. Phil,

that show was a serious letdown. I was watching earlier this week when

he did a show on bipolar people. The brainmatters place came up again,

and again, nothing clear was mentioned. Very disappointing. I have yet

to have them explain what 'help' this place actually offers once you get

the scan done, and of course, money or insurance coverage of this scan

was never mentioned that I heard either.

Jackie Geipel wrote:

> On Mar 9, 2006, at 3:28 AM, christory12 wrote:

>

>

>> I have also " heard " that an MRI could be used to diagnose

>> Asperger's. My mom saw an " expert " on the Dr. Phil show who

>> apparently made some misleading comments about this.

>>

>

> I try not to get medical advice from Oprah or Dr. Phil.

> It's sensationalist entertainment.

>

>

>

[Guest guest]

,

That sounds like a nightmare. I will have to ask my son if he like

tweety bird ...... My son has been having a lot of ticks, and I

have to count out other brain disfuctions. My husband and I have

agreed to push for an MRI even though it's going to scare him as much

as it is going to scare us. My intuition is telling me it is the right

thing to do. I just hope that I don't back out last minute.

[Guest guest]

On Mar 9, 2006, at 12:16 PM, Donna B wrote:

> That Dr. Phil show on Asperger's was extremely one-sided, and imo,

> misleading. The brainscan was done by a company that uses the

> brainscan

> in ways that weren't clear, nor did they ever discuss cost.

They run around $3000 plus or minus.

Brain Imaging and

Child and Adolescent Psychiatry

With Special Emphasis On SPECT

http://psych.org/psych_pract/clin_issues/populations/children/SPECT.pdf

Jackie

[Guest guest]

Oh my goodness! And that's just the scan -- ouch! How do they really

expect parents to be able to afford that?

Thanks for sharing, I've been wondering how much.

Donna

BTW, your posts are always so informative -- thank you!

Jackie Geipel wrote:

> On Mar 9, 2006, at 12:16 PM, Donna B wrote:

>

>

>> That Dr. Phil show on Asperger's was extremely one-sided, and imo,

>> misleading. The brainscan was done by a company that uses the

>> brainscan

>> in ways that weren't clear, nor did they ever discuss cost.

>>

>

> They run around $3000 plus or minus.

>

> Brain Imaging and

> Child and Adolescent Psychiatry

> With Special Emphasis On SPECT

>

>

> http://psych.org/psych_pract/clin_issues/populations/children/SPECT.pdf

>

>

>

> Jackie

>

>

[Guest guest]

If you have a tumor not a big deal and most are treatable. Is your Dr. going to

put you back on T meds. If now I would sue the SOB being that low your going to

suffer bone loss, heart problems, muscle loss the list goes on.

Phil

Ody <dragonslayer1010@...> wrote:

Hey folks. Wish I had more time to visit the posts. First time here. I

have struggled with low test for years. Had a doc give me androgel and

clomid and I seemed to feel better, but my doc moved and I live in a

rural area where I only have one to pick from,he is very conservative

and has stopped giving me meds. Anyhow my latest testosterone reading

was around 50 and LH about 1. Had an MRI of the brain and am waiting

for the results. Just a little nervous I guess. I am wondering if

anyone knows how often docs just simply do not find any reason for the

low test such as maybee that is just the way your body is? Or if

anyone has dealt with the brain tumor issue.I don't want to get my

wife all worked up for nothing so I am downplaying that for now.

Needless to say with a level that low I feel like crap, gaining weight

rapidly, no sex drive, weak and I cannot concentrate long enough to

accomplish hardly a simple task. I am also very tense and crabby. I

need to convince the doc to get me back on meds since my quality of

life sucks right now. I will take any advice. Thanks

[Guest guest]

Phil -

Do you know how long it takes for cardiac issue to develop from low T? Also,

you made some comments earlier today about Clomid side effects. Can you be more

specific about the side effects you know of?

philip georgian <pmgamer18@...> wrote:

If you have a tumor not a big deal and most are treatable. Is your Dr. going

to put you back on T meds. If now I would sue the SOB being that low your going

to suffer bone loss, heart problems, muscle loss the list goes on.

Phil

Ody <dragonslayer1010@...> wrote:

Hey folks. Wish I had more time to visit the posts. First time here. I

have struggled with low test for years. Had a doc give me androgel and

clomid and I seemed to feel better, but my doc moved and I live in a

rural area where I only have one to pick from,he is very conservative

and has stopped giving me meds. Anyhow my latest testosterone reading

was around 50 and LH about 1. Had an MRI of the brain and am waiting

for the results. Just a little nervous I guess. I am wondering if

anyone knows how often docs just simply do not find any reason for the

low test such as maybee that is just the way your body is? Or if

anyone has dealt with the brain tumor issue.I don't want to get my

wife all worked up for nothing so I am downplaying that for now.

Needless to say with a level that low I feel like crap, gaining weight

rapidly, no sex drive, weak and I cannot concentrate long enough to

accomplish hardly a simple task. I am also very tense and crabby. I

need to convince the doc to get me back on meds since my quality of

life sucks right now. I will take any advice. Thanks

[Guest guest]

Read this guys story it is all in this.

http://www.geocities.com/a_impotence/male_menopause.html

Clomid big side effect is seeing blue and eye problems.

Phil

" muscleintraining@... " <muscleintraining@...> wrote:

Phil -

Do you know how long it takes for cardiac issue to develop from low T? Also, you

made some comments earlier today about Clomid side effects. Can you be more

specific about the side effects you know of?

philip georgian

wrote:

If you have a tumor not a big deal and most are treatable. Is your Dr. going to

put you back on T meds. If now I would sue the SOB being that low your going to

suffer bone loss, heart problems, muscle loss the list goes on.

Phil

Ody wrote:

Hey folks. Wish I had more time to visit the posts. First time here. I

have struggled with low test for years. Had a doc give me androgel and

clomid and I seemed to feel better, but my doc moved and I live in a

rural area where I only have one to pick from,he is very conservative

and has stopped giving me meds. Anyhow my latest testosterone reading

was around 50 and LH about 1. Had an MRI of the brain and am waiting

for the results. Just a little nervous I guess. I am wondering if

anyone knows how often docs just simply do not find any reason for the

low test such as maybee that is just the way your body is? Or if

anyone has dealt with the brain tumor issue.I don't want to get my

wife all worked up for nothing so I am downplaying that for now.

Needless to say with a level that low I feel like crap, gaining weight

rapidly, no sex drive, weak and I cannot concentrate long enough to

accomplish hardly a simple task. I am also very tense and crabby. I

need to convince the doc to get me back on meds since my quality of

life sucks right now. I will take any advice. Thanks

[Guest guest]

My son had a MRI when he was 3. He did have to have anesthesia. They also

did a hearing test on him, while he was out. He woke up groggy, but I took

him home shortly afterwards. He played quietly that afternoon, around the

house. That night he went to bed as usual, but then woke up a short time

later and vomited, then went to sleep for the night. He was back to himself

the next day. He has had anesthesia on other occasions, and that time was

the only time he vomited from it.

Kristy

MRI

Hello everyone,

Can someone please share your child's MRI experience? Did you have to use

anesthesia for your child?

Thanks,

Argie - RPV, CA

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute and/or the Parent Coalition.

[Guest guest]

Argie,

My son had an MRI at three years old as part of his diagnosis through a

neurologist (worthless in our experience) and psychologist to rule out any

medical issues. Too bad they didn't do an immune panel!

He was labeled PDD-NOS based on behavior/speech/communication/etc levels.

They did have to use anesthesia. It was out patient at a local hospital. The

worst thing about it was that I was promised- by the neurologist and then the

hospital staff- that I would be brought back to the recovery room as soon as he

was out of the testing so I would be there when he woke up.

I could hear him screaming through two or more sets of double doors and had to

ask at the desk to be let back. Two nurses were smothering him with attention

and a third was trying to get him to eat a Popsicle.

(Just what one of our kids wants- right? ha ha)

They didn't want to let him leave until he ate the Popsicle but I told them he

was too upset and I'd brought juice cups for him. He just wanted out of there

and away from all those people.

- in Mobile, AL

Reality lies beyond the horizon...

Wonderwegian

[Guest guest]

Hi ,

Thank you for replying. I'm sorry you had a bad experience at the hospital.

When our son had his ear tube surgery they called us into recovery the

minute he woke up and let us stay with him until he was alert and could eat

or drink popsicles, apple or orange juice. This was done at Children's

's Hospital in Long Beach. But I was thinking Torrance Memorial for

the MRI. We have an appointment with Dr. G, this Friday, so I'll ask him

then.

Thanks again.

Argie

Re: MRI

Argie,

My son had an MRI at three years old as part of his diagnosis through a

neurologist (worthless in our experience) and psychologist to rule out any

medical issues. Too bad they didn't do an immune panel!

He was labeled PDD-NOS based on behavior/speech/communication/etc levels.

They did have to use anesthesia. It was out patient at a local hospital.

The worst thing about it was that I was promised- by the neurologist and

then the hospital staff- that I would be brought back to the recovery room

as soon as he was out of the testing so I would be there when he woke up.

I could hear him screaming through two or more sets of double doors and

had to ask at the desk to be let back. Two nurses were smothering him with

attention and a third was trying to get him to eat a Popsicle.

(Just what one of our kids wants- right? ha ha)

They didn't want to let him leave until he ate the Popsicle but I told

them he was too upset and I'd brought juice cups for him. He just wanted

out of there and away from all those people.

- in Mobile, AL

Reality lies beyond the horizon...

Wonderwegian

[Guest guest]

Good luck Kiki! We'll be anxious to hear your results!

Bobbi

[low dose naltrexone] MRI

I had an MRI of my brain this week also. It is the first one I have had in almost 4yrs. The last one I had was while on Rebif so that the neuro could tell me it was not working for me.(as if I couldn't tell) That is when I stopped the Rebif , quit seeing a neuro , went to see Dr B and started LDN.

A friend told me about an open minded neuro so I decided to try. She will not write me a script for LDN but she did send me for PT and MRI so I figured it was time . I will report my results as soon as I get them.

Kiki

Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more.

[Guest guest]

Hi Kiki,

I hope you get a great report. I think of you often and wonder - how is

your Dad? My dear dad joined the Lord on 3-20-2006 - he was 91.

I will always be grateful beyond words for Dr. Bihari and LDN. My dad lived

weil and his passing was not because of multiple myeloma, but respiratory

issues. He had a blot clot in his lung right after Christmas 2005, and then

he got a bedsore - but his days of being bedridden were short, and his

overall quality of life was excellent.

I will keep you in my prayers and hope we will meet again at a future LDN

conference.

Aloha,

Susie Sedlock

7117 Park Terrace Drive

andria, VA 22307

703-998-0272 - Home Office

703-801-0243 - Cell

2002Eldo@...- E-Mail

EJS11715@... - E-Mail

>From: noclue915@...

>Reply-low dose naltrexone

>low dose naltrexone

>Subject: [low dose naltrexone] MRI

>Date: Sat, 27 Jan 2007 22:01:01 EST

>

>I had an MRI of my brain this week also. It is the first one I have had in

>almost 4yrs. The last one I had was while on Rebif so that the neuro could

>tell

>me it was not working for me.(as if I couldn't tell) That is when I

>stopped

>the Rebif , quit seeing a neuro , went to see Dr B and started LDN.

>

>A friend told me about an open minded neuro so I decided to try. She will

>not

>write me a script for LDN but she did send me for PT and MRI so I figured

>it

>was time . I will report my results as soon as I get them.

>

>Kiki

[Guest guest]

There has only been ONE study done using MRI's supporative of a solid diagnosis

of autism and that study is considered experimental. In this study there were

" special procedures " used not used in a typical MRI. The results showed

anomalies in the temporal lobe including decreased size of the left planum

temporal, bilateral reduction of temporal perfusion and abnormal activation of

the superior temporal sulcus in response to vocal sounds. MOST, if not ALL,

standard MRI's requested by unfamiliar doctors helping the thousands of families

with nueroimmune children are useless. So far SPECT Scans are the only useful

diagnostic tool we have, other than lab work and behavioral observation. This

is not a blanket statement. In finishing a behavioral medicine doctorate of

psychology and working fulltime as an autism consultant/marriage and family

therapist helping hundreds of families struggling with autism and adhd, blanket

statements would not be used lightly. For families that are just entering this

arena, please don't stop trying because a doctor told you your child's MRI came

out fine. And if you are worried about your child having Chiari Malformations,

even then, an MRI is not the best diagnostic tool. Seek out professionals who

are experts at what your concern is. That is why Dr. Goldberg is the best in

this field. He is an expert at Nueroimmune Deficiency Syndrome. Doctors

ordering MRI's for your child with autism clearly need more education...

Sincerely,

Juarez, M.S., Marriage and Family Therapist

[Guest guest]

I'm not an expert - just a mommy like many others here who wanted as much info

as possible when my son was dx'd just before he turned 3. I asked his ped to

order a MRI and he was trying to be really helpful, but that useless test cost

me $$$, not to mention my son had to be sedated for it. I wish the ped would

have known enough to tell me so and not ordered it ;-(

Kristy

Re: MRI

There has only been ONE study done using MRI's supporative of a solid

diagnosis of autism and that study is considered experimental. In this study

there were " special procedures " used not used in a typical MRI. The results

showed anomalies in the temporal lobe including decreased size of the left

planum temporal, bilateral reduction of temporal perfusion and abnormal

activation of the superior temporal sulcus in response to vocal sounds. MOST, if

not ALL, standard MRI's requested by unfamiliar doctors helping the thousands of

families with nueroimmune children are useless. So far SPECT Scans are the only

useful diagnostic tool we have, other than lab work and behavioral observation.

This is not a blanket statement. In finishing a behavioral medicine doctorate of

psychology and working fulltime as an autism consultant/marriage and family

therapist helping hundreds of families struggling with autism and adhd, blanket

statements would not be used lightly. For families that are just entering this

arena, please don't stop trying because a doctor told you your child's MRI came

out fine. And if you are worried about your child having Chiari Malformations,

even then, an MRI is not the best diagnostic tool. Seek out professionals who

are experts at what your concern is. That is why Dr. Goldberg is the best in

this field. He is an expert at Nueroimmune Deficiency Syndrome. Doctors ordering

MRI's for your child with autism clearly need more education...

Sincerely,

Juarez, M.S., Marriage and Family Therapist

[Guest guest]

Well, I am glad I got the MRI. I just wish I had known he was allergic to the

sedation drugs. He had an EEG several months before and it showed that he had

generalized spikes (other children sometimes have spike activity on one side or

a small area). I would like to get a spect scan but I will have to talk to his

doctor (I wish I asked on Monday but I forgot) to see if she will order one. It

looks like this may not be possible because this technology is rather new and

only available in a few places. Is that right?

My father died of a brain tumour in 1996 and I always wondered if he would have

survived if his doctor took his concerns seriously and ordered an MRI.

I agree with you in that your doctor should have informed you of the costs up

front. Did your insurance not cover it?

All the best,

Jill

__________________________________________________

[Guest guest]

Jill,

Our insurance did not pay because we have a $1500 annual deductible, and the

test was done early in the year. We also had a neurospect (we traveled 2.5

hours for it), and I was much happier with that test, but next time I would

'shop' a bit before having the neurospect done because I thought our test

location/experience was very weird and also it cost $$$$$ and did not come

with a report. I won't elaborate.

Kristy

RE: Re: MRI

Well, I am glad I got the MRI. I just wish I had known he was allergic to

the sedation drugs. He had an EEG several months before and it showed that

he had generalized spikes (other children sometimes have spike activity on

one side or a small area). I would like to get a spect scan but I will have

to talk to his doctor (I wish I asked on Monday but I forgot) to see if she

will order one. It looks like this may not be possible because this

technology is rather new and only available in a few places. Is that right?

My father died of a brain tumour in 1996 and I always wondered if he would

have survived if his doctor took his concerns seriously and ordered an MRI.

I agree with you in that your doctor should have informed you of the costs

up front. Did your insurance not cover it?

All the best,

Jill

__________________________________________________

[Guest guest]

Hi ,

You know, once again your post if full of WRONG information. An MRI is the ONLY

way to correctly diagnose a child with Chiari Malformation. Please don't try to

argue this point with me as my son has had four brain surgeries and I spend much

of my time reading Chiari research papers (basically it's my life).

Good for you in finishing your doctorate in psychology, this still doesn't give

you a degree in neurosurgery now does it? As you know the two professions are

completely different. Neurosurgery requires medical school and then ten years of

hard work and study after to finally work in this field of medicine.

ALL CHILDREN WITH A DEVELOPMENTAL DELAY diagnoses should have an MRI as well as

an EEG to look for abnormalities in their brains. This advise was given to us

time and time again by the top neurosurgeons at s Hopkins , The University

of Chicago Children's Hospital and The Chiari Institute in New York. All places

that have treated our little boy.

As I said before, these kids present like children with AS but actually have

Chiari and can suffer brain damage as a result of being misdiagnosed.

Our son was misdiagnosed for five years before we found his chiari. He's not

alone, neurosurgeons are seeing these kids all the time and it's frustrating to

them that they get them later rather than as babies or toddlers.

A standard MRI will show a chiari in the right hands (neurosurgeon or at the

very least a neuro-radiologist). By the way a spect scan is used to look at

blood flow to the brain, useless in a chiari diagnoses( some do have lack of

blood flow but this test will not diagnose a chiari malformation). An MRI looks

at CSF flow, and this is what is often interrupted in the brain of a child with

chiari. Without proper CSF flow our bodies cannot function normally . My son was

in multisystem organ failure at the time of his diagnoses / and his immune

system doesn't function well due to his brainstem trauma.

And finally ,doctors who don't order MRI's are the one's who clearly need more

education. I can't tell you how many physicians who saw our son and neglected to

order an MRI, told me that they were sorry, after the fact. (By the way, my

husband is an adult gastroenterologist and we would never sue, so they felt

comfortable expressing there regret to us).

@...: jamieandsal@...: Wed, 7 Nov 2007

22:52:31 -0600Subject: Re: MRI

There has only been ONE study done using MRI's supporative of a solid diagnosis

of autism and that study is considered experimental. In this study there were

" special procedures " used not used in a typical MRI. The results showed

anomalies in the temporal lobe including decreased size of the left planum

temporal, bilateral reduction of temporal perfusion and abnormal activation of

the superior temporal sulcus in response to vocal sounds. MOST, if not ALL,

standard MRI's requested by unfamiliar doctors helping the thousands of families

with nueroimmune children are useless. So far SPECT Scans are the only useful

diagnostic tool we have, other than lab work and behavioral observation. This is

not a blanket statement. In finishing a behavioral medicine doctorate of

psychology and working fulltime as an autism consultant/marriage and family

therapist helping hundreds of families struggling with autism and adhd, blanket

statements would not be used lightly. For families that are just entering this

arena, please don't stop trying because a doctor told you your child's MRI came

out fine. And if you are worried about your child having Chiari Malformations,

even then, an MRI is not the best diagnostic tool. Seek out professionals who

are experts at what your concern is. That is why Dr. Goldberg is the best in

this field. He is an expert at Nueroimmune Deficiency Syndrome. Doctors ordering

MRI's for your child with autism clearly need more education... Sincerely,

Juarez, M.S., Marriage and Family Therapist