We have a child with an arterio-veinous malformation in the brain.
Unlike most AVMs which are small and concentrated, this one is
diffuse, and covers a large area of the brain. It has been reviewed by
many of the top experts in the country, and no operations are
practical. Because the AVM is of a diffuse nature, the belief is that
it is less likely to cause hemmorages. But also due to its size, no
form of opertion, whether it be surgury, gamma-knife, or emoblization,
is even a possibility.

This AVM has not caused any neurological deficits, and our child is
generally doing okay, with two exceptions. First, almost every day he looks very
pale and tired, and does not have nearly the full complement of energy
that he usually has. Second, he has had three bouts of headaches, with
one being severe enough that he needed to stay in the hospital over a
three-day period until the doctors tried treatment with Fioricet,
which worked.

One MRI/A and three CT scans have showed a stable AVM over a period of
a year.

However, after each headache episode, our child was extremely
withdrawn and lethargic over a period of weeks, with the worst case
being about 5 weeks long after the 3-day hospital stay. This one
happened just after school ended, otherwise he would have missed more
than a month of school. Other episodes caused a lethargic period of a
few weeks, while the most mild headache still caused a week of virtual
down time.

Because this AVM is so unusual, the doctors simply say "we don't
know." No one has offered even a theory as to why these long periods
of lethargy would follow a headache episode, which they label a
"migraine," but this seems to be a catch-all phrase. Nor has anyone
come up with a theory about the ongoing lethargy and pallor.

We have done many additonal tests, including and echo-cardiogram, and
all have turned up normal. An anemia bloodtest has just been done, and
results will be available soon, but prior tests showed no problem.

The research we are requesting will focus on syptoms of lethargy,
paleness, and headache as reported in AVMs, or in other types of brain
malformations or conditions. We are especially looking for insight
into what could be causing these symptoms, and for reports on
successful (and unsuccessful) treatments for these conditions.

We are specifically NOT looking for research on surgical treatments
for AVMs. We are NOT looking to weigh which is better, since none are
relevant.

The successful researcher will provide useful information and guidance
for these questions. (You don't have to definitively answer them).

1. What could be causing, and what are the treatments or preventative
measures for the long periods of lethargy after a headache episode
which we (believe but are not absolutely certain) is caused by the
AVM.

2. What could causing, and what are the treatments or preventative
measures for the everyday lethargy and paleness (of a much lower
nature than 1 above)

3. What can you find out about large, inoperable AVMs of a diffuse
nature? Are there any relevant papers? (We've looked hard)

4. What other brain-related conditions might cause similar symptoms,
and might the treatments that work for those be useful here?

5. Are there any alternative medicine treatments that are worth
exploring?

6. Are there specific experts that we should be consulting. We have
already consulted with AVM experts in Arizona, Boston, and Toronto.

---

Request for Question Clarification by pkp-ga on 08 Dec 2002 11:36 PST

Hi Maphound,

It might also be useful for us researchers to know:

- how old is your child?
- what is your child's gender?
- when was your child first diagnosed?
- when was the first headache episode?
- how much time elapsed between each headache episode?
- have the headache episodes been increasing or decreasing 
  in severity, or have they been random?

pkp-ga

---

Clarification of Question by maphound-ga on 08 Dec 2002 13:02 PST

...sorry previous post happened when I hit space bar by accident...

- how old is your child? 
- what is your child's gender? 
- when was your child first diagnosed? 
- when was the first headache episode? 
- how much time elapsed between each headache episode? 
- have the headache episodes been increasing or decreasing  
  in severity, or have they been random? 

Our child is male, 7 years old. The condition was first diagnosed when
we took him to the hospital because he was throwing up and was sleepy,
and had reported that he "hit his head at the playground." These being
signs of a head trauma, the hospital did a CT scan which showed
pronounced evidence of the AVM. They followed immediately with an
MRI/A. At first they, and we were quite paniced because of the size of
the AVM. Over time, though, more careful examination of the films by
many doctors pointed to the fact that this AVM does not have a nidus,
and has lots of draining veins, both of which reduce risk of
complications.

It turns out to be unlikely that our child hit his head. Review with
his teacher showed that he had not been on the playground for the last
few days before the incident. Up until the severe (second) headache,
the none of the doctors were even ready to state that the headaches or
other symptoms were due to the AVM. After that one, the operating
assumtion changed to that the AVM was the cause, and that the initial
episode was also a result of the AVM.

Sequence of Events:

1. December, 2001: Called by school nurse on last day of school due to
vomiting and sleepiness. Condition doesn't improve at home, goes to
hospital for CT scan and eventual MRI/A. AVM is discovered.

2. June, 2002. Period higher lethargy. Child report he feels "dizzy".
Put him to bed, he reports a headache. Tylenol doesn't work.
Pediatrician says wait a bit, try Advil. (Advil is a concern due to
AVM and vascular effects.) Gave him Advil about 2am. Helps alot. He
say "I can see again." (Headache was affecting his vision). By about
5am, headache is back, and getting worse. We take him to the hospital.
They do another scan, which shows no hemmorage. But headache is
getting worse, keeps getting worse over the next day. Tylenol with
codein does not work. A lenghthy debate ensues as to whether Fioricet
can be used safely with his vascular malformation. Eventually, the
doctors conclude that it can be, and this medication stops the
headache quickly. But it still takes more than a day before our child
can come home from the hospital. Then ensues about 5 weeks of
lethargy. Typically he just wants to play quietly, maybe watch tv. He
might get enough energy to go to a friends house for a half hour, then
he's back and quiet again. The period of energy grows steadily, but it
takes about 5 weeks to get back to "normal." Even though normal today
is a child that look like he stayed up most of the night, even though
he consistently sleeps 11 hours per night.

3. September 2002. Our child reports a headache while we are on
vacation. Again we saw a period of increased lethargy leading up to
it. We can see it coming, usually, and (right now) are powerless to
stop it. Per prior agreement with the hospital, they said we should
treat with Fioricet, then come immediately to the hospital. We give
him the medicine, a realtively low dose, which stops the headache. We
drive to the hospital for another CT scan, which is unchanged from the
two previous.

4. Novemeber 2002. A routine annual MRI is canceled by agreement with
us and the neurosurgeon who is following our child. With three
previous CT scans, it is felt that another MRI isn't needed. The
neurosurgeon notices child's pallor and lack of energy, and orders an
echo-cardiogram, which was normal.

5. December 2002. Lethargy continues. Pediatrian orders blood test for
anemia. Results not in yet. Desire to find other input leads to this
posting.

As for the sequence of the headaches:  First was mild initially in
terms of headache, but grew to moderate. Lots of vomiting and blurred
vision. Second was severe in every regard. Third was least severe,
because we treated at first mention with Firoicet.

I hope this is helpful. We have tons more information, just ask for
what you need.

---

Request for Question Clarification by synarchy-ga on 19 Dec 2002 00:26 PST

Hi -

I've been doing a fair amount of research towards this question, and
feel that I will likely be able to provide you with a good answer in a
few days - this by no means precludes other researchers from answering
the question, or others from adding useful comments as they have done
so far.  I've spoken to approximately 20-30 neurosurgeons who treat
pediatric avm's, including several who have written the most current
summaries in the field (I happen to be in a position where that is
possible) and they have provided not only advice, but also suggested
numerous references which I'm in the process of tracking down.

synarchy

Question ID: 121420, "Research Treatment Options for Atypical
Childhood AVM", by maphound-ga.

QUESTION

The essence of the question is as follows:

"The research we are requesting will focus on syptoms of lethargy,
paleness, and headache as reported in AVMs, or in other types of brain
malformations or conditions. We are especially looking for insight
into what could be causing these symptoms, and for reports on
successful (and unsuccessful) treatments for these conditions."

[...]

"The successful researcher will provide useful information and
guidance for these questions. (You don't have to definitively answer
them).

"1. What could be causing, and what are the treatments or preventative
measures for the long periods of lethargy after a headache episode
which we (believe but are not absolutely certain) is caused by the
AVM.

"2. What could causing, and what are the treatments or preventative
measures for the everyday lethargy and paleness (of a much lower
nature than 1 above)

"3. What can you find out about large, inoperable AVMs of a diffuse
nature? Are there any relevant papers? (We've looked hard)

"4. What other brain-related conditions might cause similar symptoms,
and might the treatments that work for those be useful here?

"5. Are there any alternative medicine treatments that are worth
exploring?

"6. Are there specific experts that we should be consulting. We have
already consulted with AVM experts in Arizona, Boston, and Toronto."

Note: AVM = "arteriovenous malformation" (or "arterio-venous
malformation")

ANSWER

Some of my colleages have provided a significant amount of information
on the medical condition of your child.  This answer will focus on the
six key questions you stated.  Given the volume of information, brief
answers are given here with pointers to relevant quotations under the
list of SOURCES.

"1. What could be causing, and what are the treatments or preventative
measures for the long  periods of lethargy after a headache episode
which we (believe but are not absolutely certain) is caused by the
AVM."

Cannot find a clear answer as to whether they may or may not be caused
by AVM.  But see [4]: "Large" ... [diffused?] ... "malformations may
have enough blood flow through them to stress the pumping ability of
the heart, especially in young patients."  If the pumping ability of
the heart is reduced, this may be the cause for the periods of
lethargy and loss of energy.

"2. What could causing, and what are the treatments or preventative
measures for the everyday lethargy and paleness (of a much lower
nature than 1 above)"

Fioricet and triptans are mentioned in the literature.  As you surely
know, these drugs could become addictive, therefore must be used with
care under medical supervision [7, 8].

"3. What can you find out about large, inoperable AVMs of a diffuse
nature? Are there any relevant papers? (We've looked hard)"

Almost nothing.  New (or recently developed) minimally invasive
endovascular therapies may be something to investigate [12].  I think
this is still an experimental therapy.  Can find many papers about AVM
in the medical literature, but not specifically about the kind of
"Atypical Childhood AVM" you describe.  See SOURCES [1] to [12] and
the SEARCH STRATEGY.

"4. What other brain-related conditions might cause similar symptoms,
and might the treatments that work for those be useful here?"

There seems to be consensus that AVM is a congenital disorder, but
otherwise the etiology is basically unknown [1, 2, 3, 4].

There are two approaches: prevention and pain mitigation. 
Thermography is being researched as a possibility for early detection
of low levels of endorphins [3].  The National Headache Foundation
Medication Index [7] includes Fioricet, among others.

"5. Are there any alternative medicine treatments that are worth
exploring?"

See answer to question 3 above.  I would be happy to contact Dr.
Jeffrey Farkas, but you probably can have a more informed discussion
with him.  See contact information in [12].

"6. Are there specific experts that we should be consulting. We have
already consulted with AVM experts in Arizona, Boston, and Toronto."

You may wish to investigate the following:

Cincinnati Children's Hospital-Hemangioma & Vascular Malformation
Center [10.2]
The Neurological Institute of Columbia-Presbyterian Medical Center
[11]
University of Medicine and Dentistry of of New Jersey-Dr. Jeffrey
Farkas [12]

SOURCES

[1] Neuropsychology - Arteriovenous Malformation (AVM)
http://www.braincampus.com/neupath/cva/avm.html

* Definition: "Arteriovenous Malformation (AVM): These are congenital
developmental abnormalities in which the normal capillary bed that
exists between the artery and venous circulation fails to develop in
one part of the brain. They exist as a mass of thin-walled vessels
carrying blood at arterial pressure. These may rupture, causing
subarachnoid hemorrhage. AVM's may also cause seizures and headache."

[2] Med Help International - The Patient Medical Information Center
http://www.medhelp.org/glossary2/new/GLS_0516.HTM

* Definition: "A hemangioma, or arteriovenous malformation is a tangle
of abnormal vessels that forms an abnormal communication between the
arterial and venous systems. Most are developmental (congenital). If
large enough, they may produce a shunt of sufficient magnitude to
raise the cardiac output. AVM's may occur in the brain, brainstem, and
spinal cord, where they may cause headaches, seizures, or bleeding
(subarachnoid hemorrhage)."

[3] National Institute of Neurological Disorders and Stroke (NINDS) -
NINDS Arteriovenous Malformation Information Page - "Brain Resources
and Information Network" (BRAIN)
[3.1] http://www.ninds.nih.gov/health_and_medical/disorders/avms_html.htm
[3.2] http://www.ninds.nih.gov/health_and_medical/disorders/headache.htm
[3.3] http://www.ninds.nih.gov/health_and_medical/pubs/headache_htr.htm
[3.4] http://www.ninds.nih.gov/health_and_medical/pubs/migraineupdate.htm
[3.5] http://www.ninds.nih.gov/news_and_events/migraine_workshop_2000.htm

* Research: "One theory of headaches is that people who suffer from
severe headache and other types of chronic pain have lower levels of
endorphins than people who are generally pain free. Thermography is an
experimental technique for diagnosing headache. In thermography, an
infrared camera converts skin temperature into a color picture, or
thermogram, with different degrees of heat appearing as different
colors. Researchers have found that thermograms of headache patients
show strikingly different heat patterns from those of people who never
or rarely get headaches." [3.2]

[4] University of Pennsylvania Health System 
http://www.pennhealth.com/ency/article/000779.htm

* Etiology: "Cerebral arteriovenous malformation (AVM) is a congenital
disorder. The cause of abnormal blood vessel development in the brain
is unknown. Arteriovenous malformations vary greatly from person to
person. The size varies, from massive lesions involving multiple
vessels to lesions so small they are difficult to distinguish on
testing. Large malformations may have enough blood flow through them
to stress the pumping ability of the heart, especially in young
patients."

[5] National Organization for Rare Disorders (NORD)
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Arteriovenous%20Malformation

[6] Vascular Birthmarks Foundation (VBF)
http://www.birthmark.org/venous_malformation.htm
http://www.birthmark.org/physicians_list.htm

[7] National Headache Foundation - Medication Index 
http://www.headaches.org/consumer/topicsheets/medicationindex.html
http://www.headaches.org/consumer/topicsheets/fiorinal_fioricet.html

[8] Discovery Health Channel - Headache Pain 
http://health.discovery.com/centers/pain/headache/head_triptans.html

[9] Headache: Hope Through Research  
http://www.pueblo.gsa.gov/cic_text/health/headache/head1.htm

* Research: "Thermography, an experimental technique for diagnosing
headache, promises to become a useful clinical tool. In thermography,
an infrared camera converts skin temperature into a color picture or
thermogram with different degrees of heat appearing as different
colors. Skin temperature is affected primarily by blood flow. Research
scientists have found that thermograms of headache patients show
strikingly different heat patterns from those of people who never or
rarely get headaches."

[10] Cincinnati Children's Hospital - Hemangioma and Vascular
Malformation Center
[10.1]
http://www.cincinnatichildrens.org/Health_Topics/Your_Childs_Health/Hemangiomas_and_Vascular_Malformations/Conditions_and_Diagnoses/arteriovenous_malf.htm
[10.2]
http://www.cincinnatichildrens.org/Services/Programs_And_Services/Hemangioma_and_Vascular_Malformation_Center/default.htm

[11] The Neurological Institute of Columbia-Presbyterian Medical
Center
http://cuss.ps.columbia.edu/avm_validity/Contact.asp

[12] University of Medicine and Dentistry of of New Jersey (UMDNJ) 
[12.1] http://www.umdnj.edu/homepage/index.html
[12.2] http://hometown.aol.com/chiefres/myhomepage/business.html

* New Therapy (?): "Interventional Neuroradiology - Minimally invasive
endovascular therapies are available for the treatment of vascular
disorders that involve the brain and the spinal cord, including brain
aneurysms, AVMs, tumors, carotid stenosis and stroke at UMDNJ." [12.2]

* Point of Contact: Dr. Jeffrey Farkas, 1-973-972-6624,
farkasje@umdnj.edu [12.1]

SEARCH STRATEGY

1. Google search for <"arteriovenous malformation">, <"arterio-venous
malformation">
2. Google search for <"atypical childhood AVM">, <"diffused AVM">
3. Google search for <lethargy paleness headache AVM>
4. Google search for <"subarachnoid hemorrhage">, <"subarachnoid
hemorrhage" headache>
5. Google search for <fioricet>, <headache fioricet>, <hemangioma
headache fioricet>
6. Google search for <triptans>, <headache triptans>, <hemangioma
headache triptans>
7. Google search for <endorphins>, <headache endorphins>, <headache
endorphins thermography>
8. All the above with the following variants: "news", "expert",
"journal", "-surgey", "-gamma", "-embolization"
9. All the above using NINDS Search, Med Help Search, AllTheWeb 

RESEARCH SUMMARY

Answers to your six key questions were researched and documented.  No
silver bullets were found, but information is provided that supports
your due diligence in seeking any possible avenue to help your child.

I hope the information captured in this answer will be useful to you
and your child.  Before rating this answer, please ask for
clarification if you have a question or if you would need further
information.

Please continue requesting research support from Google Answers.  

Sincerely,

pelican-ga
Google Answers Researcher

P.S. -- Other researchers please add clarifications or comments as
appropriate.  Also, if appropriate and fair as determined by GA
editors, I would be happy to share the earnings for this answer with
other researchers.

---

Request for Answer Clarification by maphound-ga on 29 Dec 2002 18:57 PST

Pelican,

Thank you for your answer. I will comment here rather then provide a
rating.

You have uncovered a one new item, regarding thermography, and a
second one regarding heart blood flow. But you are quite far from
covering the questions asked.

On your answer to the main question:

"1. What could be causing, and what are the treatments or preventative
measures for the long  periods of lethargy after a headache episode
which we (believe but are not absolutely certain) is caused by the
AVM."
 
You stated: 

Cannot find a clear answer as to whether they may or may not be caused
by AVM.  But see [4]: "Large" ... [diffused?] ... "malformations may
have enough blood flow through them to stress the pumping ability of
the heart, especially in young patients."  If the pumping ability of
the heart is reduced, this may be the cause for the periods of
lethargy and loss of energy.


Comment:

I was remiss in not adding to the sequence of events in the initial
description that the doctors did suspect this, especially when the
neurosurgeon saw him looking so tired. In November this year, 2002,
they performed a cardiac inspection, both by listening (found nothing)
and by an echo cardiogram (normal). The doctor who performed the test
said. "Often, the symptoms disappear before we ever figure out what
was causing them." As a footnote, with the time off from school of
almost two weeks now, our child has normal color and energy for the
first time in about three months.

The heart interaction is one of the textbook answers for lethargy for
AVMs, and granted I didn't disclose the results of the test to begin
with. However, given that this is the main question, I would expect
more depth here.

Here an area for some additional checking - what kind of brain-related
problems cause long periods of lethargy, and are there any treatments
that reduce the period of lethargy.

Your answer for #2:

"2. What could causing, and what are the treatments or preventative
measures for the everyday lethargy and paleness (of a much lower
nature than 1 above)"
 
Fioricet and triptans are mentioned in the literature.  As you surely
know, these drugs could become addictive, therefore must be used with
care under medical supervision [7, 8].

Comment:

This doesn't answer the question about lethargy or paleness. Also, it
turns out that there is a low incidence of addition in these drugs if
they are used only as needed. In any case, we use it extremely seldom.
But your statement is not an answer to this critical part of the
question.

Your answer for #3:

"3. What can you find out about large, inoperable AVMs of a diffuse
nature? Are there any relevant papers? (We've looked hard)"
 
Almost nothing.  New (or recently developed) minimally invasive
endovascular therapies may be something to investigate [12].  I think
this is still an experimental therapy.  Can find many papers about AVM
in the medical literature, but not specifically about the kind of
"Atypical Childhood AVM" you describe.  See SOURCES [1] to [12] and
the SEARCH STRATEGY.
 
Comment: 

Again, this answer is lacking depth. For example, the link to the NJ
Medicine and Dentistry is for treatments that are standard in the
medical field. Nothing new here - just the normal (and often
effective, for the right kind of AVM) treatments done throughout the
US. Not experimental

Your response to Question #4:

"4. What other brain-related conditions might cause similar symptoms,
and might the treatments that work for those be useful here?"
 
There seems to be consensus that AVM is a congenital disorder, but
otherwise the etiology is basically unknown [1, 2, 3, 4].
 
There are two approaches: prevention and pain mitigation. 
Thermography is being researched as a possibility for early detection
of low levels of endorphins [3].  The National Headache Foundation
Medication Index [7] includes Fioricet, among others.
 
Comment:

That AVMs are congenital seems accepted, but that wasn't the question.
The key here was to look at other brain-related problems that might
have similar symptoms. This part of the question needs more work.

"5. Are there any alternative medicine treatments that are worth
exploring?"
 
See answer to question 3 above.  I would be happy to contact Dr.
Jeffrey Farkas, but you probably can have a more informed discussion
with him.  See contact information in [12].

Comment:

Farkas is providing standard treatments best done locally here. These
treatments do not apply in this case because of the size.
 
"6. Are there specific experts that we should be consulting. We have
already consulted with AVM experts in Arizona, Boston, and Toronto."
 
You may wish to investigate the following: 
 
Cincinnati Children's Hospital-Hemangioma & Vascular Malformation
Center [10.2]
The Neurological Institute of Columbia-Presbyterian Medical Center
[11]
University of Medicine and Dentistry of of New Jersey-Dr. Jeffrey
Farkas [12]

Comment:

Overall, at this moment, I consider this research to be lacking in the
areas that I noted.

---

Clarification of Answer by pelican-ga on 30 Dec 2002 08:04 PST

> Request for Answer Clarification by maphound-ga on 29 Dec 2002 18:57
PST
> 
> Pelican, 
>  
> Thank you for your answer. I will comment here rather then provide a
> rating.
>  
> You have uncovered a one new item, regarding thermography, and a

Need more information about thermography?

> second one regarding heart blood flow. But you are quite far from

Need more information about heart blood flow as related to lethargy
and loss of energy?

> covering the questions asked.

OK, I thought the answer provided was very informative, 
but will try harder and will be happy to work with you 
until you are fully satisfied.
  
> On your answer to the main question: 
>  
> "1. What could be causing, and what are the treatments or
preventative
> measures for the long  periods of lethargy after a headache episode
> which we (believe but are not absolutely certain) is caused by the 
> AVM." 
>   
> You stated:  
>  
> Cannot find a clear answer as to whether they may or may not be
caused
> by AVM.  But see [4]: "Large" ... [diffused?] ... "malformations may
> have enough blood flow through them to stress the pumping ability of
> the heart, especially in young patients."  If the pumping ability of
> the heart is reduced, this may be the cause for the periods of 
> lethargy and loss of energy. 
>  
>  
> Comment: 
>  
> I was remiss in not adding to the sequence of events in the initial
> description that the doctors did suspect this, especially when the
> neurosurgeon saw him looking so tired. In November this year, 2002,
> they performed a cardiac inspection, both by listening (found
nothing)
> and by an echo cardiogram (normal). The doctor who performed the
test
> said. "Often, the symptoms disappear before we ever figure out what
> was causing them." As a footnote, with the time off from school of
> almost two weeks now, our child has normal color and energy for the
> first time in about three months

Good!
  
> The heart interaction is one of the textbook answers for lethargy
for
> AVMs, and granted I didn't disclose the results of the test to begin
> with. However, given that this is the main question, I would expect
> more depth here.
>  
> Here an area for some additional checking - what kind of
brain-related
> problems cause long periods of lethargy, and are there any
treatments
> that reduce the period of lethargy.

OK, will keep digging.
  
> Your answer for #2: 
>  
> "2. What could causing, and what are the treatments or preventative
> measures for the everyday lethargy and paleness (of a much lower 
> nature than 1 above)" 
>   
> Fioricet and triptans are mentioned in the literature.  As you
surely
> know, these drugs could become addictive, therefore must be used
with
> care under medical supervision [7, 8]. 
>  
> Comment: 
>  
> This doesn't answer the question about lethargy or paleness. Also,
it
> turns out that there is a low incidence of addition in these drugs
if
> they are used only as needed. In any case, we use it extremely
seldom.
> But your statement is not an answer to this critical part of the
> question.

What about the following:

1. A list of preventive measures
2. A list of headache mitigation therapies

Is this what you would like to see?  If so, the lists should 
include only what is applicable to your child, i.e., "atypical 
(diffused) childhood AVM" -- right?
  
> Your answer for #3: 
>  
> "3. What can you find out about large, inoperable AVMs of a diffuse
> nature? Are there any relevant papers? (We've looked hard)" 
>   
> Almost nothing.  New (or recently developed) minimally invasive 
> endovascular therapies may be something to investigate [12].  I
think
> this is still an experimental therapy.  Can find many papers about
AVM
> in the medical literature, but not specifically about the kind of 
> "Atypical Childhood AVM" you describe.  See SOURCES [1] to [12] and
> the SEARCH STRATEGY. 
>   
> Comment:  
>  
> Again, this answer is lacking depth. For example, the link to the NJ
> Medicine and Dentistry is for treatments that are standard in the
> medical field. Nothing new here - just the normal (and often
> effective, for the right kind of AVM) treatments done throughout the
> US. Not experimental

Please consider again Dr. Farkas' statement in [12.2]. Aaccording 
to Dr. Farkas, this "interventional neuroradiology" treatment is 
"relatively new", "minimally invasive", and effective in situations 
previously "considered untreatable".  I just sent the following email
to Dr. Farkas:

-----------------------------------------------------------------
Subject: Seeking treatment for special case

Hello Dr. Farkas, 

In your webpage, you state:

"Interventional Neuroradiology is a relatively new field that uses
state of the art equipment to treat complex cerebrovascular problems
from within the blood vessels. Minimally invasive endovascular
treatments have had a major impact on the treatment of complex
cerebrovascular disorders. Some of the conditions that are currently
being treated include Cerebral Aneurysms, Arterio-Venous
Malformations, Tumors of the brain, spinal cord and head and neck.
Exciting new therapies for Stroke Prevention and treatment are also
available.
Conditions in the past considered untreatable can now be treated using
endovascular techniques alone or in combination with surgical or
medical therapy."   http://hometown.aol.com/chiefres/myhomepage/business.html

Is this a new, experimental treatment?  Is it applicable to atypical
(diffused) childhood AVM?  Could you kindly send me information on
conditions where this treatment is indicated/counter-indicated?

I am trying to help a child who has been diagnosed with atypical
(diffused) childhood AVM; standard treatments such as surgery, gamma,
embolization are not applicable; and suffers headaches followed by
long periods of lethargy.  Can you do something for this child?

Also, would be grateful if you send me the citations of medical papers
you may have published on your method.

Finally, if you are not the right person, who would be the best expert
to see about doing something for this kid?

Please let me hear from you ASAP!
------------------------------------------------------------
  
> Your response to Question #4: 
>  
> "4. What other brain-related conditions might cause similar
symptoms,
> and might the treatments that work for those be useful here?" 
>   
> There seems to be consensus that AVM is a congenital disorder, but 
> otherwise the etiology is basically unknown [1, 2, 3, 4]. 
>   
> There are two approaches: prevention and pain mitigation.  
> Thermography is being researched as a possibility for early
detection
> of low levels of endorphins [3].  The National Headache Foundation 
> Medication Index [7] includes Fioricet, among others. 
>   
> Comment: 
>  
> That AVMs are congenital seems accepted, but that wasn't the
question.
> The key here was to look at other brain-related problems that might
> have similar symptoms. This part of the question needs more work.

OK, will keep searching.
  
> "5. Are there any alternative medicine treatments that are worth 
> exploring?" 
>   
> See answer to question 3 above.  I would be happy to contact Dr. 
> Jeffrey Farkas, but you probably can have a more informed discussion
> with him.  See contact information in [12]. 
>  
> Comment: 
>  
> Farkas is providing standard treatments best done locally here.
These
> treatments do not apply in this case because of the size.

Size?  If it is diffused, what do you mean by "size"?  
The size of affected area?
 
> "6. Are there specific experts that we should be consulting. We have
> already consulted with AVM experts in Arizona, Boston, and Toronto."
>   
> You may wish to investigate the following:  
>   
> Cincinnati Children's Hospital-Hemangioma & Vascular Malformation 
> Center [10.2] 
> The Neurological Institute of Columbia-Presbyterian Medical Center 
> [11] 
> University of Medicine and Dentistry of of New Jersey-Dr. Jeffrey 
> Farkas [12] 
>  
> Comment: 
>  
> Overall, at this moment, I consider this research to be lacking in
the
> areas that I noted.

What about Cincinnati Children's Hospital?  It has international 
reputation as the best place to go for childhood AVMs.  Point of 
contact is Richard G. Azizkhan, MD:

Richard G. Azizkhan, MD
Cincinnati Children's Hospital Medical Center
3333 Burnet Avenue, Cincinnati, Ohio 45229-3039
Phone: 513-636-4576
Fax: 513-636-7657
Email: richard.azizkhan@chmcc.org

What about the Columbia-Presbyterian Medical Center?  Point of 
contact for the *AVM World Study* is J.P. Mohr, MD: 

J.P. Mohr, MD
The Neurological Institute
Columbia-Presbyterian Medical Center
710 West 168th Street, New York, NY 10032, USA
Phone: (212) 305 8033
Fax: (212) 305 5796
Email: jpm10@columbia.edu 

Please let me know.

Sincerely,
pelican-ga

---

Clarification of Answer by pelican-ga on 15 Jan 2003 18:10 PST

Hello maphound-ga:

Never heard from Dr. Farkas.  In my last answer clarifications I had
some questions for you.  I want to do my best to address all your
concerns.
Hope your child is doing fine.

pelican-ga

---

Clarification of Answer by pelican-ga on 16 Jan 2003 20:31 PST

FYI, I keep searching the medical literature and institutions.  I have
sent about 50 requests for information to institutions and individual
neurologists with AVM expertise.  Not sure if this is helpful, but
below are some responses:

[1] "Luis, this is a very unusual case.  I personally don't know of
any specific medical treatment (as you said, surgical intervention is
not an option) for such a diffuse AVM.  His headaches could be from a
sudden dilation of those vessels from whatever reason, such as an
increase in blood pressure.  It is also conceivable that the AVM is
causing some sort of steal syndrome that is depriving the brain of
oxygen and nutrients.  Of course, those are just educated guesses, and
anything could be happening.  Some beta blockers and calcium channel
blockers are used for severe chronic headaches, so that is a possible
treatment.  Unfortunately, I have not run across any new treatments
for such an atypical AVM.  My prayers go to the child who is
suffering."
  		
[2] "First off Luis, your question may be better answered by a
Pediatric Neurosurgeon. The best centers for you to obtain your
answers on this that I can think of would be the University of
Pittsburgh Hospital or Johns Hopkins University Medical School in
Maryland. They are on the forefront of new and effective treatments
all the time for Pediatric neurological and structural disorders. To
get to the rest of your question, I am not quite sure why the child
would look pale and tired to you on a daily basis, I certainly don't
seem how the AVM would directly contribute to this unless the child
was extremely tired/exhausted as a result of the severe headaches he
is suffering from. That brings os to the meat of the matter and that
is the headaches. There is no doubt that the "diffuse" AVM you speak
of is the direct cause of this childs' headaches. Unfortunately there
is no curative medical/medicinal treatment for these headaches other
than to repair the structural disorder. The medical treatment for
these headaches would be the same as for any other "vascular" headache
with the exception of the use of "triptan" type drugs or "ergotamine"
type meds which may potentially increase the pressure within the AVM
itself. I am afraid all that you are stuck with is meds like Fioricet
and other pain killers for the severe headaches."
		
[3] "Diffuse AVM's are thought to be part of a spectrum between
normal, "tight" AVM's where there is no intervening brain tissue, and
less dense "diffuse" AVM where there is tissue.  Headaches are likely
caused by a similar mechanism as migraine headaches (spreading
depression), and should be treated as such.  Given this, I advise
antiepileptic drugs such as depakote or topiramate in the treatment of
these types of headaches.  Good luck. The Division of Neurological
Surgery, Childrens Hospital of Los Angeles, has written a paper on
this topic. I would recommend contacting the physicians."
		
I have sent email to Children's Hospital of Pittsburgh, Johns Hopkins,
and
Children's Hospital of Los Angeles, to see what they say.  Will keep
you posted.  Please let me know if you have any other suggestions.

pelican-ga

---

Clarification of Answer by pelican-ga on 19 Jan 2003 18:40 PST

Hello maphound-ga, 

There is a neurosurgeon in Rio de Janeiro, Brazil, who uses an
arterioscopic method (as the one used for brain arteriography) that
reaches the brain and then he injects a substance that closes the
arteries or AVM, reportedly with with great success.  Do you think I
should pursue this lead?

Hope the child keeps improving.

Sincerely,
pelican-ga

A number of researchers contributed excellent work to this question,
and provided a standard for comparison. Some did not propose to answer
the question because they felt they did not have a complete enough
answer. Pelican did propose an answer which I felt initially was not
as thourough as other answers posted only as a comment. His
clarifications helped, and showed additional work done.

The standard of excellence on Google Answers is extremely high, and
for a $200 question it needs to be high. I would categorize this as an
acceptible answer, and therefore give it three stars.

As the father of a 6-year-old I can sympathize with the frustration
and pain your family is going thru.
After spending quite some time researching your question I was unable
to find a satisfactory answer due to lack of credible research on the
subject.

The following may be helpful but do not answer all of your questions
directly so the references are posted as a comment only.


Relevant to AV Malformation I found the following reputable medical
journal articles:

Neuropsychological Function and Brain Arteriovenous Malformations:
Redefining Eloquence as a Risk for Treatments
http://www.medscape.com/viewarticle/415056

Epidemiology and Natural History of Arteriovenous Malformations
http://www.medscape.com/viewarticle/415053

Overview of Management Schemes for Intracranial Arteriovenous
Malformations
http://www.medscape.com/viewarticle/415052


Relevant to your question about headaches I found the following in
reputable medical journals:

Headache Prophylaxis
http://www.medscape.com/viewarticle/431450

Childhood Migraine: A Practical Review
http://www.medscape.com/viewarticle/429229

Childhood-onset cluster headache.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12213616&dopt=Abstract

Biofeedback in the treatment of headache and other childhood pain.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12206048&dopt=Abstract

Treatment of paediatric headache.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12387689&dopt=Abstract

IHS criteria and gender: a study on migraine and tension-type headache
in children and adolescents.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8665576&dopt=Abstract

IHS criteria for migraine and tension-type headache in children and
adolescents.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8675428&dopt=Abstract

Childhood headache. A diagnostic approach]
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12467547&dopt=Abstract

Behavioral treatment of migraine in children and adolescents.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12175270&dopt=Abstract

In reference to pallor and weakness the medical conditions which can
result in these symptoms are too numerous. I found no direct reference
linking these to AV Malformation. Generally speaking these symptoms
are congruent with anemia and cardiovascular-pulmonary dysfunction
both of which have been addressed. The pending lab test may be
helpful.

In reference to specialists I would recommend contacting the Mayo
Clinic
http://www.mayo.edu/

Search terms: AV Malformation, AV Malformation treatment, Headaches
and AV Malformation, Inoperable AV Malformation, Childhood headaches,
Search Engines: Google, Overture, WebMD, Pubmed, Merck Manual, and New
England Journal of Medicine Online, Medscape.

I hope this information will be helpful and my prayers are with you.

Kindest Regards

Kinglouie-ga

It certainly wouldn't hurt to be in contact with Robert Solomon, M.D.
or John Pile-Spellman, M.D. at Columbia-Presbyterian.  They have a
first rate neuro center and an ongoing AVM study project. 
http://cpmcnet.columbia.edu/dept/nsg/NSGCPMC/specialties/avm.html

Mass General link (where I suppose you've been already)
http://neurosurgery.mgh.harvard.edu/Neurovascular/LinkVasc.htm

You can also enter "AVM" here to get a list of the latest articles:
http://www.docguide.com/dgc.nsf/ge/Unregistered.User.545434?OpenDocument

Best of luck to your family,
V

Hi again Maphound, 

I've found some additional information for you. I'm not posting this
an an complete answer for several reasons. Most importantly, I don't
have access (without signing up for a costly medline membership) to
the full-text of the article references that I am citing, and thus
cannot provide the detailed analysis that a question in your price
range deserves. There may be many other researchers out there who do
have access to such article repositories that can use these leads.
Alternatively, you may wish to access these articles yourself and make
your own findings as to how they relate to your son's condition.

Secondly, as the mom of a young child, I'm not confident that I'll
have the time needed to sufficiently research all six of the specific
questions you pose in your question.I am trying to progress a question
at a time and will post the answers that I find as comments, in the
hopes that the info is relevant to you or can be built-upon by other
researchers.

My research to date has focused on the occurence of migraine headaches
in AVM patients. This appears to be a substantial body of papers in
this area. In summary, some of the research suggests, according to the
abstract for "Arteriovenous malformations and migraine: case reports
and an analysis of the relationship" by Haas:

"The correlative and surgical data together show that migrainous
attacks develop in relation to AVMs, but not within the malformation
itself. Instead, the neighboring brain is probably the generative
site."

In addition, in 2000, an article was published, "Demographic,
Morphological, and Clinical Characteristics of 1289 Patients With
Brain Arteriovenous Malformation" finding that  "Chronic headache was
recorded in 14% [of subjects]."

Given the above, I am now looking generally into lethargy and
migraines to see what research exists in this area.

I used the following site to find the abstracts below relating to AVMs
and headaches:
http://www.ncbi.nlm.nih.gov:80/entrez/

There does not appear to be a way to provide you with a specific url
to my query, but two that were helpful were:

 "arteriovenous malformation migraine"

and following the "related articles"  link from the paper,
"Intracranial arteriovenous malformation and migraine." by Bruyn GW.
at:
http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?db=m&form=6&Dopt=r&uid=6498934

Here are the abstracts from some of the most relevant papers I have
found:

Neurochirurgie 2001 May;47(2-3 Pt 2):177-83	Related Articles, Links 
  
[Characteristics of headache associated with cerebral arteriovenous
malformations]
[Article in French]
full text onlime at:
http://www.ncbi.nlm.nih.gov:80/entrez/utils/fref.fcgi?http://www.e2med.com/pubmedredirect.cfm?Pii=75809
Ghossoub M, Nataf F, Merienne L, Devaux B, Turak B, Roux FX.
Service de Neurochirurgie, Centre Hospitalier Sainte-Anne, 1, rue
Cabanis, 75674 Paris Cedex 14.
BACKGROUND: and purposes. The purpose of this study was to identify
the specific characteristics of headaches associated with cerebral
arteriovenous malformations in order to differentiate them from other
known entities of headaches such as migraine, cluster headache, and
trigeminal neuralgia. This differentiation allows an early diagnosis
of cAVM and a treatment to be administrated before any cerebral
hemorrhage. PATIENTS AND METHODS: The study included 700 patients with
cAVM and treated by radiosurgery. Out of this series, only 109 (48
males, 61 females, mean age of 33) presented with headaches. Headaches
were studied as a possible revelation mode of a cAVM, either as an
isolated sign, preceding an epileptic seizure, a cerebral hemorrhage,
or associated with a neurological deficit. Analysis concerned 13
clinical parameters and 30 anatomic parameters based on angiography.
RESULTS: Headaches were found in 15.6%; they were isolated in 6%. They
preceded a cerebral hemorrhage in 12.6%, constituting an early alarm
signal when increasing in intensity, frequency and duration. They were
associated with seizures or a neurological deficit in 9.6%. We found a
predominant female sex-ratio (0.78) and occurrence at a young age
(72.3% between 10 and 40 years). Headaches were non-pulsating in
95.3%; nausea, vomiting, light or sound phobia were only found in
4.7%. Headaches were unilateral and homolateral to the malformation in
80%, corresponding to the malformation topography in 97.4% in
posterior location and 80% in anterior location. Associated
neurological symptoms existed in 20.2%; related to the malformation
and lasting 5 to 30 minutes. Duration of pain episodes was less than 3
hours in 77% with a frequency of 1 to 2 per month in 82.5%. Pain was
mild and responded to simple analgesics. A family migraine was found
in only 3 patients. The angiographic characteristics of the
malformations were meningeal afferences, superficial venous drainage
and posterior location. CONCLUSIONS: Headaches associated with
cerebral arterio-venous malformations form a distinct category that
can be determined from specific characteristics; this should help an
early diagnosis of cerebral arterio-venous malformations in order to
start a treatment before the occurrence of cerebral hemorrhage.
PMID: 11404693 [PubMed - indexed for MEDLINE]



1: Cephalalgia 1984 Sep;4(3):191-207	
  
Intracranial arteriovenous malformation and migraine.
Bruyn GW.
To define more closely the clinical relationship between migraine and
intracranial arteriovenous malformation (iAVM), the clinical features
of 57 reported instances and of 7 personal cases were analysed.
Migraine attacks symptomatic of AVM include: late onset, frequent
absence of (familial) migraine history, diminution or even inversion
of the usual sex-ratio in migraine, brevity of attacks, disruption of
the usual sequence of attack symptoms and, finally, unusual or
permanent neurologic deficit. An attempt has also been made to clarify
the epidemiological relationship. The reported frequency of migraine
in cases of AVM, and AVM in cases of migraine is reflected against an
inquiry into the number of annually diagnosed cases of AVM in 20 Dutch
neurological/neurosurgical centres, covering 12.10(6) inhabitants in 8
of the 11 provinces. The annual incidence of migraine is estimated at
1:3,500 population, that of diagnosed iAVM is 120, i.e. 1:100,000.
Coincidental occurrence of the two conditions works out at 1:4 X 10(8)
per year. The presented case series of 7 seen in 2 of the 20 centres
strongly militates against such a chance hypothesis.
PMID: 6498934 [PubMed - indexed for MEDLINE]

------------------------------------------------------------------------

2: Headache 1991 Sep;31(8):509-13	

Arteriovenous malformations and migraine: case reports and an analysis
of the relationship.
Haas DC.
Department of Neurology, State University of New York Health Science
Center, Syracuse.
Some patients with cerebral arteriovenous malformations (AVMs) suffer
recurrent migrainous attacks which meet the official criteria for
migraine. The relationship of these attacks to the malformations has
been poorly substantiated. Instances where attacks disappeared
following surgical extirpation of an AVM support a relationship, but
several other reported surgical outcomes do not. Both patients
presented here had surgical results seemingly antithetical to a
relationship: the attacks persisted in the first patient and began in
the second after removal of the AVM. Nevertheless, data assembled from
the literature attests to a causal role for AVMs in the production of
migrainous attacks, by showing an overwhelming correlation between the
side of the cranium with the AVM and the side afflicted by unilateral
headache. An equally good correlation exists for lateralized auras.
The correlative and surgical data together show that migrainous
attacks develop in relation to AVMs, but not within the malformation
itself. Instead, the neighboring brain is probably the generative
site.
Publication Types: 
*	Review
*	Review of Reported Cases


PMID: 1960053 [PubMed - indexed for MEDLINE]

------------------------------------------------------------------------

3: Cephalalgia 1992 Apr;12(2):115-9	
  
Migraine with aura-like syndrome due to arteriovenous malformation.
The clinical value of transcranial Doppler in early diagnosis.
Silvestrini M, Cupini LM, Calabresi P, Floris R, Bernardi G.
Clinica Neurologica, Dipartimento di Sanita Pubblica, II Universita di
Roma, Italy.
Arteriovenous malformations are an acknowledged cause of migraine that
can long constitute the only clinical manifestation before bleeding.
We describe two cases of patients suffering from symptoms like
migraine with aura in whom arteriovenous malformations were detected
by transcranial Doppler examination. We suggest that a screening of
migraine patients to prevent bleeding from a possible underlying
unruptured arteriovenous malformation could be performed by using
transcranial Doppler, a non-invasive and low cost examination.
PMID: 1576640 [PubMed - indexed for MEDLINE]

------------------------------------------------------------------------

4: Ann Neurol 1979 Feb;5(2):199-201	

Resolution of classic migraine after removal of an occipital lobe AVM.
Troost BT, Mark LE, Maroon JC.
A patient had a thirteen-year history of symptoms clinically
indistinguishable from classic migraine: a slowly progressive visual
fortification spectrum lasting 40 minutes, followed by a five- to
six-hour throbbing unilateral headache with nausea and vomiting. After
unsuccessful migraine therapy, investigation revealed a large
occipital lobe arteriovenous malformation (AVM). Surgical removal of
the AVM resulted in immediate and total resolution of all symptoms.
PMID: 426484 [PubMed - indexed for MEDLINE]

------------------------------------------------------------------------

5: Headache 1993 Nov-Dec;33(10):563-5	Related Articles, Links 

Comment in: 
*	Headache. 1994 May;34(5):287.


Migraine and intracranial vascular malformations.
Monteiro JM, Rosas MJ, Correia AP, Vaz AR.
Department of Neurology, Hospital Santo Antonio, Porto, Portugal.
The relationships between migraine and A-V Malformations is a subject
of controversy and the arguments are mainly based on case reports and
retrospective data. To clarify this subject a structured inquiry and
classification of headaches in large samples of patients with
intracranial vascular malformations (IVM) is essential. The authors
studied the prevalence of headaches in 51 patients with IVM admitted
to our Department, between 1984 and 1992. The methods used were a
review of medical records followed by a self-administered headache
questionnaire and clinical interview using the IHS criteria for the
diagnostic classification of headaches. The relative frequency of the
different types of headaches was calculated and compared with the
general population data. A correlative study of the headache
characteristics with the type and location of the IVM was made. A high
prevalence (47%) of migraine type headaches and a strong positive
correlation (88.8%) between the site of AVM and side of the pain was
found. This is highly suggestive but not conclusive of a
pathophysiologic relationship between these entities. The conclusion
drawn is that a prospective study of headaches by questionnaire or
semi-structured clinical interview in patients with IVM is essential
to discover the effective prevalence and characteristics of headaches
associated with IVM and their relationships.
PMID: 8294196 [PubMed - indexed for MEDLINE]

------------------------------------------------------------------------

6: Neurosurgery 1984 Mar;14(3):358-62	

Association of intracranial aneurysm and arteriovenous malformation in
childhood.
Ostergaard JR.
The simultaneous occurrence in the same patient of an intracranial
saccular aneurysm and an arteriovenous malformation (AVM) is a
well-known phenomenon. Usually the aneurysms are related anatomically
to the arteries supplying the AVM, and it is generally accepted that
the aneurysms are caused by hemodynamic stresses resulting from the
presence of an AVM. Because patients with both an AVM and an aneurysm
are older than those presenting with an AVM alone, a time factor seems
essential in the development of the aneurysm accompanying an AVM. In
this article, the case reports of two children are presented. They
both had a symptom-producing AVM and an attendant saccular aneurysm.
The malformations were anatomically closely related and the
significance of hemodynamic stresses in the development of the
aneurysms cannot be neglected. However, in these two cases, the time
factor obviously cannot be of vital importance. Therefore, another
factor, possibly in the form of a vascular collagen defect, may be
suspected as essential in the formation of aneurysms during childhood.
The character of this defect is briefly discussed.
PMID: 6709166 [PubMed - indexed for MEDLINE]

------------------------------------------------------------------------

7: Headache 2001 Feb;41(2):193-7	
  
Daily migraine with visual aura associated with an occipital
arteriovenous malformation.
Spierings EL.
Department of Neurology, Brigham and Women's Hospital, Boston, MA,
USA.
A 51-year-old woman with daily attacks of migraine with visual aura is
described. The aura always occurred on the right and the headache
always on the left side of the head, suggesting a structural lesion in
the left occipital lobe. The lesion appeared to be an arteriovenous
malformation of which almost full obliteration resulted in a decrease
in frequency of the aura and in intensity of the headache. Subsequent
treatment of borderline hypothyroidism with levothyroxine brought
about a dramatic improvement in frequency of both the aura and the
headache. The case is discussed in the light of our present
understanding of the pathogenesis of the migraine attack.
PMID: 11251705 [PubMed - indexed for MEDLINE]

------------------------------------------------------------------------

8: Headache 1996 Nov-Dec;36(10):625-7	
  
Atenolol prophylaxis in migraine secondary to an arteriovenous
malformation.
Kowacs PA, Werneck LC.
Internal Medicine Department, Hospital de Clinicas, Universidade
Federal do Parana, Curitiba, Brazil.
The migrainous syndrome secondary to a parieto-occipital arteriovenous
malformation usually presents as unilateral headache with visual aura
of progressive severity. We report successful prevention by atenolol
of migraine with visual aura associated with an occipital vascular
malformation. Effectively preventing migraine delayed specific
therapeutic measures, thereby exposing the patient to the risk of an
intracranial hemorrhage. The authors consider that prophylactic
therapy should not be started whenever such an association is
suspected.
PMID: 8990605 [PubMed - indexed for MEDLINE]

------------------------------------------------------------------------

9: Eur J Pediatr 1983 Jun-Jul;140(3):260-7	

Intracranial arteriovenous malformations and aneurysms in childhood
and adolescence.
Schauseil-Zipf U, Thun F, Kellermann K, Mandl-Kramer S, auf der Haar
K.
Clinical data of 19 arteriovenous malformations (AVM) and 15 aneurysms
(AN) are presented. Combined clinical, neurophysiological and
neuroradiological follow-up studies have been carried out on the
surviving patients (14 AVM and 10 AN). Two patients with multiple AN
had coarctation of the aorta. Three AVM of the Vein of Galen showed
typical symptoms within the 1st year of life, all other lesions became
evident later than 5 years of age. In the acute phase of the disease
clinical history and neurological deficits of AVM and AN tend to be
very similar. Subarachnoid hemorrhage with or without intracranial
hematoma is the most frequent initial symptom. A CT scan is valuable
as a first orientating investigation but morphology and operability of
the vascular lesion is only demonstrated by angiography. The prognosis
of AVM and AN is promising as soon as the first critical period has
been survived. AVM patients show significantly less severe residual
neurological and psychiatric defects than AN cases. EEG-follow-up
studies and CT scans are helpful for controlling residual functional
and morphological cerebral damage in survivors.
PMID: 6628448 [PubMed - indexed for MEDLINE]

------------------------------------------------------------------------

10: Ann Neurol 1980 Jan;7(1):93	

Resolution of classic migraine after removal of an occipital lobe AVM.
Kattah JC, Luessenhop AJ.
Publication Types: 
*	Letter


PMID: 7362212 [PubMed - indexed for MEDLINE]

------------------------
Rev Neurol (Paris) 1997 Dec;153(12):792	Related Articles, Links 
  
[Migraine and cerebral arteriovenous malformations]
[Article in French]
fulltext online at:
(http://www.ncbi.nlm.nih.gov:80/entrez/utils/fref.fcgi?http://www.e2med.com/pubmedredirect.cfm?Pii=80799)
Bonnaud I, Cohen L, Pierrot-Deseilligny C.
Publication Types: 
*	Letter
------------------------------------------------------------------------

30: J Neurosurg 2000 Aug;93(2):224-8	

Headaches in patients with radiosurgically treated occipital
arteriovenous malformations.
Kurita H, Ueki K, Shin M, Kawamoto S, Sasaki T, Tago M, Kirino T.
Department of Neurosurgery, Graduate School of Medicine, University of
Tokyo, Japan. hkurita-tky@umin.ac.jp
OBJECT: The goal of this study was to determine the prevalence,
characteristics, and radiosurgical outcomes of headaches associated
with occipital arteriovenous malformations (AVMs). METHODS: The
authors reviewed the medical records of 37 consecutive patients with
occipital AVMs who had been treated by radiosurgery to identify the
radiological features of the AVMs before and after treatment and the
clinical features and outcomes of headaches described in accordance
with the criteria of the International Headache Society (IHS).
Thirty-six patients (97.3%) were followed for a mean period of 46.6
months. The median volume of the AVMs was 1.9 cm3, to which a mean
radiation dose of 21.6 Gy was delivered. In the entire study group,
periodic headaches were found in 17 patients (45.9%), of whom seven
(18.9%) suffered from migraines with the characteristic visual aura.
Migraine was predominantly found in patients with right-sided (p =
0.038) or laterally located (p = 0.025) AVMs. Factors associated with
a higher incidence of any type of headache included larger nidus
volume (p = 0.02), tortuous change of feeding artery (p = 0.036), and
cortical drainage with reflux in the superior sagittal sinus (p =
0.032). The actuarial rate of angiographic obliteration was 71.6% at 3
years. Headaches resolved or improved in 12 (70.6%) of 17 patients,
including six (85.7%) of seven with migraine. The outcome of headache
closely correlated with the obliteration results of the AVM (p =
0.002). CONCLUSIONS: A portion of occipital AVMs do cause headaches
that satisfy the current IHS criteria for migraine, and the prevalence
varies by the topography of the lesion. Radiosurgery can resolve
headaches in the majority of treated patients.
PMID: 10930007 [PubMed - indexed for MEDLINE]

------------------------------------------------------------------------

36: Stroke 2000 Jun;31(6):1307-10	
  
Demographic, morphological, and clinical characteristics of 1289
patients with brain arteriovenous malformation.
full-text available free online at:
http://www.ncbi.nlm.nih.gov:80/entrez/utils/fref.fcgi?http://stroke.ahajournals.org/cgi/pmidlookup?view=full&pmid=10835449
Hofmeister C, Stapf C, Hartmann A, Sciacca RR, Mansmann U, terBrugge
K, Lasjaunias P, Mohr JP, Mast H, Meisel J.
Berufsgenossenschaftliche Kliniken der Stadt Halle, Bergmannstrost,
Halle/Saale, Germany.
BACKGROUND ANF PURPOSE: The purpose of this study was to assess
demographic, clinical, and morphological characteristics of patients
with brain arteriovenous malformations (AVMs). METHODS: Prospectively
collected data of 1289 consecutive AVM patients from 3 independent
databases (1 multicenter [Berlin/Paris/Middle and Far East, n=662] and
2 single centers [New York, n=337, and Toronto, n=290]) were analyzed.
The variables assessed were age at diagnosis, sex, AVM size, AVM
drainage pattern, AVM location in functionally important brain areas
("eloquence"), and type of presentation (hemorrhage, seizure, chronic
headache, or focal neurologic deficit). Comparisons were made by
ANOVA, contingency tables, and log-linear models. RESULTS: Overall,
mean age at diagnosis was 31.2 years (95% CI 30.2 to 32.2 years), and
45% of the patients were female (95% CI 42% to 47%). AVM maximum
diameter was <3 cm in 38% (95% CI 35% to 41%). Deep venous drainage
was present in 55% (95% CI 52% to 59%). An eloquent AVM location was
described in 71% (95% CI 69% to 74%). AVM hemorrhage occurred in 53%
(95% CI 51% to 56%). Generalized or focal seizures were described in
30% (95% CI 27% to 33%) and 10% (95% CI 8% to 12%), respectively.
Chronic headache was recorded in 14% (95% CI 12% to 16%). Persistent
neurological deficits were found in 7% (95% CI 6% to 9%), and
progressive neurological deficits in 5% (95% CI 4% to 6%). Significant
differences between centers were found for age (P<0.001), sex
(P=0.04), eloquence (P=0.04), size (P<0.001), hemorrhage (P=0.006),
persistent neurological deficit (P<0.001), and reversible neurological
deficit (P=0.013). The intercenter difference found for hemorrhage
frequency did not remain after adjustment for AVM size. CONCLUSIONS:
Baseline characteristics differed considerably between centers. The
differences found in patient age and AVM size may be explained by
center-specific referral patterns and the influence of access to
treatment resources, whereas those found for other characteristics may
be attributable to center-specific definitions. Analysis of natural
history data from tertiary referral center databases may be improved
by consistent definitions applicable to the entire population of AVM
patients.
Publication Types: 
*	Multicenter Study


PMID: 10835449 [PubMed - indexed for MEDLINE]

------------------------------------------------------------------------

39: An Esp Pediatr 1988 May;28(5):437-9	

[A migraine hemisyndrome in childhood]
[Article in Spanish]
Gonzalez Herrera R, Campos Castello J, Alfaro Perez G, Ibanez Girones
G.
Seccion de Neuropediatria, Hospital Clinico Universitario de San
Carlos, Madrid.
Authors consider that migraine hemisyndrome is the unilateral
development of neurological signs and symptoms both in the prodromic
and critical stages of migraine. Symptoms usually are not limited to
the territory of only one cerebral artery in each one of the episodes.
More common symptoms are the visual ones followed by sensitive and
motor together with frequent dysphasia. Incidence in childhood is not
well known, ranging in several series between 5 and 10.7% of all the
cases of migraine. Authors reviewed 127 cases of migraine in children
under 14 years old detecting 7 cases (5.51%) of migraine hemisyndrome
in childhood. Incidence, age of onset, sex, personal and family
history, clinical features, triggering factors and diagnostic and
therapeutical approach are analyzed.
PMID: 3178061 [PubMed - indexed for MEDLINE]

------------------------------------------------------------------------

42: Acta Paediatr Scand 1984 Jan;73(1):55-9	

Childhood migraine--a dangerous diagnosis?
Tal Y, Dunn HG, Chrichton JU.
The diagnosis of childhood migraine cannot be confirmed in any
objective way. The danger of missing brain tumours or cerebral
vascular malformations in these patients was examined in two groups.
73 children who were diagnosed as childhood migraine were followed for
5.4 years. No brain tumour or vascular malformation was found, but two
children diagnosed as "abdominal migraine" had a different important
disease. The charts of 83 children with brain tumours and seven
children with vascular malformations were examined. Only three
children could be confused with migraine, and only one actually was.
PMID: 6702450 [PubMed - indexed for MEDLINE]

------------------------------------------------------------------------

89: Cephalalgia 1996 May;16(3):202-5	Related Articles, Links 
  
Cluster headache syndrome associated with middle cerebral artery
arteriovenous malformation.
Munoz C, Diez-Tejedor E, Frank A, Barreiro P.
Department of Neurology, Hospital Universitario La Paz, Universidad
Autonoma de Madrid, Spain.
Cluster headache (CH) is an idiopathic cephalalgic syndrome, although
several pathological processes have been described in association with
this syndrome. We report two cases of cluster headache in hospitalized
patients with middle cerebral artery dependent arteriovenous
malformation (AVM). After surgical removal of the AVM the headache
completely resolved, suggesting that complementary studies and
treatment of the underlying aetiology may be indicated for secondary
forms of cluster headache.
PMID: 8734773 [PubMed - indexed for MEDLINE]

kinglouie-ga and others:

Thank you so much for this extensive work that you have provided. We
will follow up on these leads in some way. My wife and I are amazed
and pleased at the excellence and the warmth of these very detailed
comments. In today's world of medicine where everyone is in such a
rush, it is hard to describe how valuable it is to have someone
knowledgeable looking for information on our specific issue.

Also, it is very interesting to see how researchers help each other,
providing significant foundation work for others. I hope that a
researcher does take on this task. We are also willing to modify the
question or post a new one if needed to make it practical for a full
report. Kinglouie, (or others) if you think some modification is
needed to make this question tractable, let us know. We certainly had
no intention of getting the amount of work without paying a fee.

Once again, our thanks for the work done to date.

There is something going on with these DNA precursor drugs. Inosine is
the one that stimulates nerve growth. Aparently they take a rat, which
has had the nerve branching off the top of the spine severed, and
stimulate it to r-enervate the brain from the opposite side. The idea
is that if a stroke paralyses the brain it can be rewired to avoid the
damaged part. Of course nerves and blood vessels are not at all alike.
If they affect each other however, This sort of thing might be of some
help. I honestly can't tell. I wish you the best of luck.
Link Re: work at Boston Childrens hospital:
http://www.bostonlifesciences.com/news76.htm
http://www.bostonlifesciences.com/news60.htm

pelican,

If you are serious about sharing your fee with other other
Researchers, that can easily be done. All you need to do is post a
question (it's nice to make it an easy one) that is addressed
specifically to a certain Researcher. The Researcher answers it and
collects his or her fee, plus whatever tip you may wish to attach.

Last month I queried the Google Answers Editors, and they suggested
that I could do this in order to fairly compensate my colleage
sgtcory-ga, who had provided assistance on a question, and who
deserved his share of the generous tip which the customer left me:

http://answers.google.com/answers/main?cmd=threadview&id=111781

~pinkfreud

Hello maphound family,

I know you mentioned no surgery was available to your child, but I saw
this new technique on the news last night (NBC, I think) called
magnetic neurosurgery being done in St. Louis.  I don't know if your
child would be a candidate for this experimental technique, but I'm
sure someone within Dr. Dacey's department could tell you. 
http://neurosurgery.wustl.edu/faculty/dacey.htm

"Mechanisms of control of the intracerebral microcirculation focusing
on the unique properties of smooth muscle and endothelial cells in
intracerebral arterioles; magnetic stereotaxis: studies of the use of
externally applied magnetic fields to guide catheters and other
surgical implements are conducted on the only magnetic stereotaxis
device in the world. New endovascular approaches to aneurysms and
AVM's are underway; prospective studies on the role of intraoperative
angiography in management of unruptured aneurysms."

To benefit from everyone's contribution, including synarchy-ga's
research, you might wish to post another question with "for synarchy
only" in your subject line.  Anyone who's had real face-time with
neurologists and physician-guided assistance certainly has a leg-up on
the rest of us. Hopefully, synarchy will post a comment to you on
his/her progress and if this is acceptable to you both.  The placement
of your question may have suffered in the holiday season craziness.

Just for personal curiosity, have you discussed with your doctor
whether your child's headaches might be amenable to oxygen therapy?  I
know it's being used for cluster headaches and was wondering if it
might be helpful in your son's case.

The folks who have commented have certainly done so willingly as
you've reminded us of the good health that we take for granted every
day.  We're glad to help with any piece of the puzzle we can provide.

Blessings,
V

Just to wrap this up, at least for now. Our son has been doing very
well recently. No major headaches, and the lethargy has seemed to
abate.

The outcome of this research, and other research that we are doing,
indicates that the AVM can cause migraines (this is well documented),
and we know for a fact that these migraines respond very well to
Fioricet.

The lethargy is a mystery to everyone. His pediatric neurologist, his
neurosurgeon, his MD all have no explanation, nor has any research
come up with any promising answers. If anyone has any ideas on what
might cause the lethargy we have seen in the past, especially after a
major headache, please post a comment.

Once again, we'd like to thank the Google Answers community for all
the input and hard work. I'd especially like to thank those
researchers who provided significant background research to this
question. I think Google Answers needs a better way of allocating the
fees to reflect a more team effort that in fact happens in answering
the question.

I was not planning to stop here.  Unless you want me to stop, I would
like to keep searching as time permits, and keep you posted.

The following just came in:

[5]  This child may have headaches if their is a significant external
carotid component to the AVM.  Sometimes embolization of the external
feeders can relieve these headaches.  I would be happy to look at the
angiogram and give you an opinion.

Michael Horowitz, M.D.
Associate Professor of Neurosurgery and Radiology
University of Pittsburgh Medical Center
horowitzmb@msx.upmc.edu

[6]  Thank you for your inquiry. We at the NIH Clinical Center Patient
Recruitment and Public Liaison Office welcome the opportunity to
assist you.
Our office provides information about how to become a participant in
the
research studies at the NIH Clinical Center in Bethesda, MD. The NIH
Clinical Center is the research hospital for the National Institutes
of
Health (NIH). All of our care is directly related to our medical
research
studies. Currently, there are no studies at the NIH Clinical Center
for
Arteriovenous Malformation of the brain.  For more information, please
contact the public information office of the National Institute of
Neurological Diseases and Stroke at 301-496-5751 or their web site at
http://www.ninds.nih.gov/

Database developed by the National Library of Medicine 
http://clinicaltrials.gov/ct/gui

National Library of Medicine web site at http://www.nlm.nih.gov/

FYI, just got this from the ACHE:

[7] "Even though surgery may not be an option for this child, he or
she does not have to suffer from headaches. Whether they are connected
to the AVM or not, headaches are treatable.

Many headache practitioners treat children as well as adults. You can
search the ACHE website for someone in your area. One name that comes
to mind is Dr. Paul Winner, a pediatric neurologist who treats many
children with headaches. He practices in Florida, but may know a
colleague in your area. His office phone is (561) 845-0500 and his
email is pwinner777@aol.com"

Just to keep you posted:

1. I just received a very informative brochure on AVM (including the
latest information on investigational therapies, and points of
contact) from the National Organization for Rare Disorders (NORD).

You can request a copy by email:

Patti Kane-Carlsen, RN, MSN
National Organization for Rare Disorders
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Phone: 203.744.0100
Fax: 203.798.2291
http://www.rarediseases.org 
RN@rarediseases.org

2.  I am trying to contact 

Dr. José Carlos Ziretta,
c/o Sociedade Brasileira de Neurorradiologia Diagnóstica e
Terapêutica,
Avenida Paulista no 491 - 6o andar,
São Paulo - SP - BRASIL - CEP: 01311-909, 
sbnrdt@sbnrdt.org ou sbnrdt@hotmail.com, 

to see if he would be willing to examine this case.  Will keep you
posted.

pelican-ga

Hello, 

I have been "traveling" the world in search of someone who might be
able to offer the best available medical opinion in the case of this
child.  You may wish to contact Professor Brian Neville in London:

Brian G R Neville
Professor of Paediatric Neurology
Neurosciences Unit, The Wolfson Centre
Mecklenburgh Square, London   WC1N 2AP

Tel:  020 7837 7618
Fax:  020 7833 9469
Email: B.Neville@ich.ucl.ac.uk

I just received the following email from Dr. Neville:

"Thank you for asking our group about a child with a diffused AVM.
Headaches which sometimes have the characteristics of migraine are
relatively common and in the main show significant improvement
following
effective intervention for the shunting vessels.  Anti-migraine
treatment
can be tried but is often not particularly effective.  The rest of the
questions raised about whether there is brain ischemia, sub-clinical
seizure activity or some disturbance of breathing during sleep are not
obviously things that one can answer by email without more data.  If
there
was a bit more information from a person who was able to provide this
clinical information, we would obviously be interested in having a
further
think about it.

With kind regards.

Yours sincerely,
Brian Neville
---------------------

With best wishes for your child's improvement,
pelican-ga