Re: Fw: Chiari Very Misunderstood in St. Louis

[Guest guest]

At 1:18 PM -0600 2/25/99, Suzanne Hill wrote:

>I received a nice note from Dr. Oro of the University of Missouri. He said

>that experiences like mine show the need to increase efforts to teach

>physicians about this disorder. He and his staff will continue to talk about

>ACM to physicians in our area and they are preparing a report for the state

>medical journal for later this year. That's why he's using the Internet to

>reach families and physicians.

>

>Suzanne Hill

WOW Suzanne that is so great!

I must be very lucky to be seeing him in the morning!!

hug,

Judy marie

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[Guest guest]

In a message dated 2/25/99 2:22:38 PM Eastern Standard Time,

hills@... writes:

<< He and his staff will continue to talk about

ACM to physicians in our area and they are preparing a report for the state

medical journal for later this year. That's why he's using the Internet to

reach families and physicians. >>

That is great that he wants help other physicians to understand what is going

on with Chiari, but I think he needs to expand the areas that he is focusing

on - like here in the Georgia area. Let's see, he needs to speak with Dr.

Hudgins, Dr. Strait, Dr. Know It All, Dr. Know Nothing, Dr. Jerk, Dr. " God

Complex " and I can't remember the rest of them right now.

It is good to hear that there are some really good guys out there!

Tory (mom of )

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[Guest guest]

Hi Suzanne, your post on St. Louis Drs. still worries me. I had

surgery in July of 97 and in October of 97 (first acm

correction///second fusion on C3 & 4) in Springfield, Il. Dr who did

surgery may be a good surgeon but is a total jerk Dr. God. The first

surgery " threw his schedule off by 3 hours " and the second by 2 hours.

Complications. He would not allow me to give my own blood prior to

surgery, nor allow any one else to either. He said I was a fool, that

HE never had to use any blood in this type of surgery, that if I didn't

trust him I shouldn't be going there. Well, I needed 2 units of blood,

and the tone was set. He told me that he would have to do the second

surgery because only he knew what he had done and to go somewhere else

could be disastrous. I still have some of the symptoms and ALL of the

pain that I originally had. I went to St. 's Mercy and the Dr.

there sent me to Dr. Laurrysen at . I've been to him 3 times and

have gone through lots of tests & to the pain center there for

Injections (3X). Injections were no help. Pain Dr. sort of questioned

the need for the last two injections but I was afraid of pissing off a

Neuro Dr. The pain can be kept just below the I can't function stage

most of the time with mega doses of neurontin 900mgs 4Xday. Need help -

do not know whether to stay at or where to go from here. Do not

know if insurance will cover another Dr. switch. Dr. Oro sounds

promising but since I have had surgery already wonder if he could

help...My family says go to Duke or Mayo...

Any advise or words of wisdom would be appreciated...did I already ask

you and forget?

Thanks, debi d

Suzanne Hill wrote:

>

> I received a nice note from Dr. Oro of the University of Missouri. He said

that experiences like mine show the need to increase efforts to teach

physicians about this disorder. He and his staff will continue to talk about

ACM to physicians in our area and they are preparing a report for the state

medical journal for later this year. That's why he's using the Internet to

reach families and physicians.

Suzanne Hill

By the way, I'm still trying to get back on the support group via digest.

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