Your chiari isn't bad enough to do surgery on...............

[Guest guest]

Hello Everyone!

I had such high hopes of hearing that my Chiari could be

fixed, as I am a Nurse off on disability, and I have had a constant

pressure in my head with fast Heart rates on standing and trying to

do anything exertional. I also " hear " electrical impulses go up the

back of my neck frequently. I have been told this is fibromyalgia for

the past 12 years, and now I am at a point that I can't work at all.

I originally found an article on the Chiari in my fibromyalgia

newsletter, took my MRI's to a neurosurgeon in Columbus, OH (the best

in our fair city). Well, he called today to say that my CSF flow

studies were read as normal, and the report said my Chiari was very

minimal, and that he was sorry, but there is nothing he can do to fix

me. He told me that I should go back to a Neurologist to find a way

to manage my symptoms. My neurologist doesn't even believe in

fibromyalgia, and had a contradiction for everything I said to him. I

have already tried almost everything medical to manage my symptoms

without relief. I am so disheartened, because I feel as if there is

no hope now. I am single, and have no one else to help support me. I

do have an MRA (angiography) scheduled (which the Neurologist

scheduled), so if that doesn't show something to explain all these

symptoms, I really feel I need to get another opinion from a

Neurosurgeon who is working with the Chiari research. (No one in

Columbus is) I can see the chiari on the MRI myself, and It also

looks as if my cerebellum is packed in there like a sardine, with

very little flow around it.

Is there anyone out there who has sent their films to be

evaluated by Dr. Weingart, Rosner, or Heffez and had a positive

experience, when they were told that it wasn't " bad enough " by

another DR? I would appreciate hearing from anyone who could offer

some words of wisdom. Thanks So Much!

[Guest guest]

In a message dated 11/9/00 11:33:40 AM Eastern Standard Time,

Hollymist1@... writes:

> Is there anyone out there who has sent their films to be

> evaluated by Dr. Weingart, Rosner, or Heffez and had a positive

> experience, when they were told that it wasn't " bad enough " by

> another DR? I would appreciate hearing from anyone who could offer

> some words of wisdom. Thanks So Much!

>

,

I am so like you struggling to get some help and understanding. I did send my

MRI's out to Heffez and Frim, got they didnt give me the same dx but theyhelp

me get the ball rolling were I am, I have yet to see a neurologist , but it

is in the works.

Send them out to one of th experts.. also there is a dr closer to you in

Cleveland that has been recomended in here before.. I think it was Dr.

Luciano at the Cleveland Clinic.. I might still have some info on him around

in my files and if I find them I will send them along.

Take care, Dawn in Michigan

[Guest guest]

Hi and others who may be frustrated,

I know how frustrated you must be. Go to the best-(my opinion). You've waited

12 years. You can handle waiting for the best. I sent my films to Dr. Milhorat

in July 1999. I had diagnosis of fibro and Cfids. I also had been diagnosed

with Neurally Mediated Hypotension. I had a phone consultation with Dr.

Milhorat's PA, and then I saw Dr. Milhorat in December 1999. I had surgery in

July 2000.

I was told that I did not have chiari by many. When Dr. M opened me up my dura

was completely shredded. He said it was thinner that cellophane. And my skull

showed severe compression as well. My cine was read as normal until the third

time by the same place. Then they admitted that it was not done as a flow study

the first 2 times. And the third time it was read as no flow posterior to the

cerebellum.

My tonsils were noted to be herniated 3 mm at the midline and almost 5 mm

laterally. On the MRI they didn't look herniated at all. Dr. Milhorat and Dr.

Kula look at other things to determine chiari including structure anomolies of

the skull, such as a steep tentorium and tilted odontoid. They also look at the

cine which and they can tell by looking at the films themselves.

Call Dr. Milhorat's office at . You may be told to see Dr. Kula

first. That's OK. He is the Neurologist that works with him.. They are both

completely wonderful. It will be worth the wait, because I'm sorry to say that

they are really backed up. But I recommend them so highly. They were the ones

that looked at me and knew something was going on and believed me. They held my

hand and told me that I was experiencing real pain and problems. They are

highly esteemed by others in their field.

Dr. Milhorat is the chief of Neurosurgery at SUNY-Brooklyn and Dr. Kula is the

Chairman of Neurology at Long Island College Hospital, which is affiliated with

SUNY.

Let me know what happens and what you do.

Love,

Maureen

Maureen T. Baron

Website: www.floridamusicarts.com

Phone/Fax:

mbaron@...

[Guest guest]

I can sympathize with you, I went to a new neuro surgeon Dr. Malik in

Garland ( he was the only one on my HMO list in the Area ) my

neurologist

even sent a 4 page finding and 20 MRI's sheets, he ran me through his

office like a military surgeon, didn't even read the report and only

glanced

at 3 (THREE) of the MRI's!!! I was in and out in a little over 15 min!

It took me an hour and a half just to get to his office and was

exhausted,

I felt really angry and frustrated with the guy and my neurologist was

really

ticked at how he treated me, because she has been on my case for 10

years.

So it looks like I will have to delay any surgery,get a different

insurance out

of my own pocket before I can see a competent NSG.

I wish you luck, I'm sorta in the boat right behind you.

OBTW, I'm divorced and on my own as well, so I say a BIG prayer

that Father puts a couple of big angels on the hood of my car and one

as a co pilot for when my hands go numb behind the wheel.

God bless, Joe ACM II 03/05/90

Hollymist1@... wrote:

> Hello Everyone!

> I had such high hopes of hearing that my Chiari could be

> fixed, as I am a Nurse off on disability, and I have had a constant

> pressure in my head with fast Heart rates on standing and trying to

> do anything exertional. I also " hear " electrical impulses go up the

> back of my neck frequently. I have been told this is fibromyalgia for

> the past 12 years, and now I am at a point that I can't work at all.

> I originally found an article on the Chiari in my fibromyalgia

> newsletter, took my MRI's to a neurosurgeon in Columbus, OH (the best

> in our fair city). Well, he called today to say that my CSF flow

> studies were read as normal, and the report said my Chiari was very

> minimal, and that he was sorry, but there is nothing he can do to fix

> me. He told me that I should go back to a Neurologist to find a way

> to manage my symptoms. My neurologist doesn't even believe in

> fibromyalgia, and had a contradiction for everything I said to him. I

> have already tried almost everything medical to manage my symptoms

> without relief. I am so disheartened, because I feel as if there is

> no hope now. I am single, and have no one else to help support me. I

> do have an MRA (angiography) scheduled (which the Neurologist

> scheduled), so if that doesn't show something to explain all these

> symptoms, I really feel I need to get another opinion from a

> Neurosurgeon who is working with the Chiari research. (No one in

> Columbus is) I can see the chiari on the MRI myself, and It also

> looks as if my cerebellum is packed in there like a sardine, with

> very little flow around it.

> Is there anyone out there who has sent their films to be

> evaluated by Dr. Weingart, Rosner, or Heffez and had a positive

> experience, when they were told that it wasn't " bad enough " by

> another DR? I would appreciate hearing from anyone who could offer

> some words of wisdom. Thanks So Much!

>

>

>

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>

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--

_____________________________________________

Joe km5cw@... North Texas