Re: Conquer Chiari Symposium Webcast

[Guest guest]

Ray, I can't thank you enough for letting us know this is available.

I want to sit here until I watch every single one.

Dr Georgy Koentges (Cellular and molecular origins of Chiari I/II) was

absolutely amazing. I have been in a somewhat heated

conversation/disagreement about Chiari I and Chiari II and that their

origin is the same and I simply can't believe the timing of this

video. My family has been soo affected by Chiari and related

conditions, I am just bursting with appreciation for the work this man

is doing. I wish I could have been there in the room, but this is

certainly the next best thing.

On a personal note, my NS here in Pittsburgh speaks as well (Dr

Ghassan Bejjani) and although the University here tied his hands in

treating my Borderline or Zero Chiari, I was moved to tears at the end

of his presentation at how he speaks of this condition. It was very

interesting also, that he elaborated on what Dr Bolognese talks about

in one of his videos, that it was a small group of radiologists

focusing on a small group of patients that decided on the 5mm

herniation as the hallmark and the basis of radiographic diagnosis of

Chiari Malformation I. KUDOS, Dr Bejjani!! I've been through lots of

ups and downs over the years with him, but I always knew deep down he

" gets it " and he cares. He is trying to open others eyes.

I'm sure I'll have lots more to say as I continue to watch and learn,

but for now, another HUGE thank you to Ray for letting us know!!

The direct link is

http://hosted.mediasite.com/hosted4/Catalog/front.aspx?cid=b5900f0b-efac-45e9-a5\

b1-ac4e8e9bb220

Hope everyone's have a good day!

Blessings and Love,

P.S.-I was able to watch the videos by choosing Not to

download/install the Active X and just choosing continue.

[Guest guest]

One more quick comment on what Dr Bejjani had to say. There was a mom

in our group that has a daughter with hydromyelia (syringomyelia)that

has never been diagnosed with Chiari. (I've read a lot about

idiopathic syringomyelia and how many believe they are undiagnosed

zero chiaris)

He comments more than twice that patients that have a syrinx/hydro and

borderline chiari certainly prove that zero chiari is real and that

the herniation as the basis of diagnosis needs to be re-examined. His

exact words are " Syrinx don't lie....you can't fake a syrinx "

Blessings

[Guest guest]

Me again.....hyper day today

I think Ray was being very modest. On the second page of the

symposium videos, you will find one by Ray D'Alonzo.

http://hosted.mediasite.com/hosted4/Catalog/front.aspx?cid=b5900f0b-efac-45e9-a5\

b1-ac4e8e9bb220

Ray, I can't tell you how moved I was to hear you speak for all of us.

Before my decompressions, I was so desperate to stop the relentless

pain that I had terrible nights locked in our bathroom wishing to end

all of it. I thought I would never live through the nightmare I was

in. Some days, I can't believe I've made it to where I am now. I just

can't thank you enough for speaking up for all of us.

It takes a lot of courage for you to share all you shared. Thank you,

from the bottom of my heart for representing those of us that don't

get the chance to speak up.

Many blessings,

[Guest guest]

Hi everyone,

I had to comment on the Symposeum webcast. I watched one of the

presenters about CSF flow and the CINE MRI. He happens to be a

Radiologist from UW Wisconsin Hopitals and Clinics in Madison WI.

what he presented was very interesting and got me thinking.

Being I have so much pressure in my head, as many of us do I'm

thinking that I need one of these flow studys done. Thankfully I am a

old patient at this hospital and a lot of my old records are still

there. I called the Neurology department there and asked how hard it

was to get in with Dr.Bermans Iskandr (NS)They said it wouldn't be to

hard but there were some things that I needed to do before I came.

Apparently this Dr. is very knowledged about Chiari and does a lot of

studies regarding our condition. The nice thing about this is it's my

home town and I wouldn't have to worry about a place to stay or food

etc, like I would with TCI.

If TCI is difficult to get in with, or to far maybe checking into

UWHC would be a good start. I have to tell you that this UW is a

teaching facility (one of the best) and a lot of good Drs come out of

there. If you want to contact them the number is .

Hope this helps someone out there.

a

decompression 2004, lots of symptoms!

[Guest guest]

Hi guys..

Just wanted to add to this... A CINE is obviously a " good tool " for CM. It's

use with CM is fairly new, and it does need to be read by someone with good

chiari experience. This is something that can be asked of any surgeon one is

considering for themselves.

Also Dr. Iskandar is already listed on our " Suggested Dr. map " ..Please go

and check it out, if you haven't already!

http://www.chiariconnectioninternational.com/map.html ...

Take care,

Sally R...Decompression '91... Hydro..VP shunt with 2 revisions...Doing

well, without medication, in Bethlehem,Pa.

Re: Conquer Chiari Symposium

Webcast

> Hi everyone,

>

> I had to comment on the Symposeum webcast. I watched one of the

> presenters about CSF flow and the CINE MRI. He happens to be a

> Radiologist from UW Wisconsin Hopitals and Clinics in Madison WI.

> what he presented was very interesting and got me thinking.

>

> Being I have so much pressure in my head, as many of us do I'm

> thinking that I need one of these flow studys done. Thankfully I am a

> old patient at this hospital and a lot of my old records are still

> there. I called the Neurology department there and asked how hard it

> was to get in with Dr.Bermans Iskandr (NS)They said it wouldn't be to

> hard but there were some things that I needed to do before I came.

> Apparently this Dr. is very knowledged about Chiari and does a lot of

> studies regarding our condition. The nice thing about this is it's my

> home town and I wouldn't have to worry about a place to stay or food

> etc, like I would with TCI.

>

> If TCI is difficult to get in with, or to far maybe checking into

> UWHC would be a good start. I have to tell you that this UW is a

> teaching facility (one of the best) and a lot of good Drs come out of

> there. If you want to contact them the number is .

>

> Hope this helps someone out there.

>

> a

>

> decompression 2004, lots of symptoms!

[Guest guest]

I just finished watching Ray's presentation at the Symposium. I just wanted to

say that what Ray presented is exactly what needs to be presented across the

nation to physicians, neurologists, and neurosurgeons. Precisely the fact that

yes, we may be depressed or anxious, but it is not what is causing our symptoms.

But, rather the other way around. Also, I appreciated the fact that he

discussed that physicians will think of radial nerve injury of the wrist as more

important and brainstem compression is not really a big deal. That way of

thinking really needs to be reversed. As a nurse, I have researched brainstem

compression, vagus nerve compression, and reduced CSF flow and all are very

serious. Whatever the actual cause: ACM, Craniocervical Instability, Cranial

Settling, or Tethered Cord Syndrome. When a person is involved in trauma from a

fall, car accident, gun shot wound, or whatever the emergency room physicians

are very keen on assessing closed head injuries

or intracranial hemorrhage which we know causes the brain to swell and there is

no room in the skull for the swelling, thus permanent nerve damage or death can

occur. Usually, it is a result of pressure on the brainstem. That is why they

don't want you to move your neck if they suspect a neck injury. It can stop

your breathing or heart. My point is that trauma is not the only factor that

can do that. I am in full agreement with Ray and am greatful that he brought it

up.

Thanks so much Ray and all the presenters at the Symposium. I'm glad to see

there are more Symposiums and Conferences being done on this subject.

Respectfully,

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

Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news,

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[Guest guest]

I just watched one of the presentations today. What a wonderful

opportunity this is! Although some of it was too technical for me to

grasp, I thought it was very interesting and I still got something from

it.

I watched the presentation on failed decompression given by Dr. Bejjani.

To me, one of the most interesting comments was something he said after

the presentation, during the Q & A time. He said that " pushed-down

tonsils alone is not true Chiari. " (He was referring to the presence of

symptoms and/or other related conditions.) I really liked seeing

photographs of titanium mesh used in some decompressions. When he was

talking about anterior and posterior flow and other factors that there

isn't enough evidence to support or refute, it was a little harder to

follow, but still interesting. Even though he was " preaching to the

choir " with a room filled with physicians, he emphasized that there is

still so much they don't know and such a need for more research.

I'd be interested to hear other reactions, particularly from others who

watched the presentation about failed decompressions.

Kim in Columbia MO