Needing some advice

[Guest guest]

Hi, everyone

 

My name is Massenburg iam 51 years old. i live live in Hou Tx.

I had a MRI done on 6/14/2012 by a ENT DR . I have had headaches sence my early

20's. I was always told i had Chronic Miagrines. My result came in and it showed

i was Boarderline for CHIARI 1 MALFORMATION. I was at a lost i had never heard

of this sickness. I was sent to a Neurology.

She did not specialized in CHIARI. I was told by this neurology, she had seen

patients with Chiari and because i was at a -7 and not a 10 she was not going to

worry about it at this, and that she would see me in 2 months. she then gave

samples of pills for mirgranes. I was not please with her answers. I decided  to

do some research on line and found  two doctors In Hou. Tx  who specialized in

Chiari,  Dr. Parrish, Dr. Tang.

I set a appt. with Dr. Parrish, because he seem to have more experience. He did

lots of test, my muscle reflexs,eyes, arms,hands. He explain what Chiari was.

how it affects you, and told me he could perform surgery. Iam afraid at this

time i dont know what to do i have cancelled my surgery because my headachs have

went away. I wonder sometimes if i need another opinion. what should i do.

 

Massenburg

[Guest guest]

HI,

I have Chiari and 50 years old, I have always had migraines. I have learned

that Chiari is a sickness that comes and goes but in creschendo, this is:

one day you have some symptoms, the next day they will dissappeared, you

feel happy for it, then months after, or even years after the symptoms come

back worst than ever before with many other new symptoms, then they go

again, then they came back again worst than before with more new symptoms.

So the first lesson is that Chiari is a progressive disease once you have it

it will get worst with age, but severity in each case is different, some of

us are worst than others, some deteriorate more quickly than others. So this

is what I have learned with my self and in many forums: The quicker you have

surgery the better it is. I have many surgeries, some because the doctors

were idiots and dit not made the first oneswell enough, some were done ok,

but the only complain I have is that I did not did the surgeries before as

Chiari worsened and damage more my spinal cord. Let me say that I did not

have the surgeries before as it took me many years to find out that I have

Chiari, Syringomylia en Tethered Cord Syndrome, so when I reach to the point

of having at diagnose at least, I just decided to have surgery because of my

own history of progression.

However the only one who can decide if you have surgery or not is you, you

have to make a balance between benefits and possible risks, having in mind:

your own history of progression, how do you feel if your Chiari is damaging

or not your brain and spinal cord, and also taking into account your age,

the older you have surgery the more risks you take.

I hope this serves.

Mexico

De: linda massenburg

Responder a: < >

Fecha: viernes 3 de agosto de 2012 23:41

Para: < >

CC:

Asunto: Needing some advice

Hi, everyone

My name is Massenburg iam 51 years old. i live live in Hou Tx.

I had a MRI done on 6/14/2012 by a ENT DR . I have had headaches sence my

early 20's. I was always told i had Chronic Miagrines. My result came in and

it showed i was Boarderline for CHIARI 1 MALFORMATION. I was at a lost i had

never heard of this sickness. I was sent to a Neurology.

She did not specialized in CHIARI. I was told by this neurology, she had

seen patients with Chiari and because i was at a -7 and not a 10 she was not

going to worry about it at this, and that she would see me in 2 months. she

then gave samples of pills for mirgranes. I was not please with her answers.

I decided to do some research on line and found two doctors In Hou. Tx

who specialized in Chiari, Dr. Parrish, Dr. Tang.

I set a appt. with Dr. Parrish, because he seem to have more experience. He

did lots of test, my muscle reflexs,eyes, arms,hands. He explain what Chiari

was. how it affects you, and told me he could perform surgery. Iam afraid at

this time i dont know what to do i have cancelled my surgery because my

headachs have went away. I wonder sometimes if i need another opinion. what

should i do.

Massenburg

[Guest guest]

Get a 2nd opinion or a 3rd opinion until you are comfortable with your

doctor and his/her answers to your questions. Go to a Doctor that is

considered to be a chiari expert.

In a message dated 8/4/2012 8:22:37 A.M. Central Daylight Time,

garner12010@... writes:

Hi, everyone

My name is Massenburg iam 51 years old. i live live in Hou Tx.

I had a MRI done on 6/14/2012 by a ENT DR . I have had headaches sence my

early 20's. I was always told i had Chronic Miagrines. My result came in

and it showed i was Boarderline for CHIARI 1 MALFORMATION. I was at a lost i

had never heard of this sickness. I was sent to a Neurology.

She did not specialized in CHIARI. I was told by this neurology, she had

seen patients with Chiari and because i was at a -7 and not a 10 she was not

going to worry about it at this, and that she would see me in 2 months.

she then gave samples of pills for mirgranes. I was not please with her

answers. I decided to do some research on line and found two doctors In Hou.

Tx who specialized in Chiari, Dr. Parrish, Dr. Tang.

I set a appt. with Dr. Parrish, because he seem to have more experience.

He did lots of test, my muscle reflexs,eyes, arms,hands. He explain what

Chiari was. how it affects you, and told me he could perform surgery. Iam

afraid at this time i dont know what to do i have cancelled my surgery because

my headachs have went away. I wonder sometimes if i need another opinion.

what should i do.

Massenburg

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