a new member with some questions.`

[Guest guest]

Hi all,

I'm a new member here and have a few questions but first I'll give some

background. I'm 22 years old, i found out 2 years ago i have an arnold chiari

malformation and syringomyelia from C4-T10. I had a posterior fossa

decompression with laminectomy of C1 and C2 on 8/20/02, then i continuned having

more problems and it was discovered i wasn't decompressed enough so on 4/1/03 i

had another decompression with laminectomies extending down to C3. Those were

both done locally in oklahoma city. I went from bad to worse so i eventually

made it to the chiari institute in manhasset NY in october of 03. I was then

diagnosed with EDS type 3 and a retroflexed odontoid, cervical instability and

cerebellar slumping. The retroflexed odontoid, extensive laminectomis and EDS

all played into the cervical instability. On 1/9/04, I had a plate put in to

correct cerebellar slumping, and a craniocervical fusion of my skull to C4. I

saw a lot of improvements but then about 6 weeks ago started having these

passing out episodes 2-3 times a day. My mri and eeg came back normal so my nsg

in NY ordered a 24 holter monitor and 24 hour eeg. I'm still awaiting the eeg

results but i got a call last wednesday from my dr's office saying i needed to

see a cardiologist that day. My heartrate was dropping from 100 down to 40.

When i saw the cardiologist he seemed to be quite knowledgeable about EDS which

was surprising. My then told me due to the EDS I'm at high risk for heart

defects. I've had a tilt table test in the past which showed positional

vertigo, but now he wants an echocardiogram and a nuclear study of the heart.

I was just wondering if anybody else had experienced anything like this. Also

my incision from my surgery in january has still not completely closed up, more

than likely due to EDS.

[Guest guest]

Welcom ,

I am Sharon a 33 yr old female from Canberra Australia with HEDS old

EDS III (or so they think), aswell as many other problems but not

those that you have, I have gut and joint issues mostly and some

heart issues too. When I go from sitting/standing to lying down my

heart rate increases and I get palpitations (or the like) basically

my heart beats faster and harder.

I just wanted to say Hello and to introduce myself to you.

Sorry I couldn't help you further but I just wanted to say Hi.

Sharon

> Hi all,

>

> I'm a new member here and have a few questions but first I'll give

some background. I'm 22 years old, i found out 2 years ago i have an

arnold chiari malformation and syringomyelia from C4-T10. I had a

posterior fossa decompression with laminectomy of C1 and C2 on

8/20/02, then i continuned having more problems and it was discovered

i wasn't decompressed enough so on 4/1/03 i had another decompression

with laminectomies extending down to C3. Those were both done

locally in oklahoma city. I went from bad to worse so i eventually

made it to the chiari institute in manhasset NY in october of 03. I

was then diagnosed with EDS type 3 and a retroflexed odontoid,

cervical instability and cerebellar slumping. The retroflexed

odontoid, extensive laminectomis and EDS all played into the cervical

instability. On 1/9/04, I had a plate put in to correct cerebellar

slumping, and a craniocervical fusion of my skull to C4. I saw a lot

of improvements but then about 6 weeks ago started having these

passing out episodes 2-3 times a day. My mri and eeg came back

normal so my nsg in NY ordered a 24 holter monitor and 24 hour eeg.

I'm still awaiting the eeg results but i got a call last wednesday

from my dr's office saying i needed to see a cardiologist that day.

My heartrate was dropping from 100 down to 40. When i saw the

cardiologist he seemed to be quite knowledgeable about EDS which was

surprising. My then told me due to the EDS I'm at high risk for

heart defects. I've had a tilt table test in the past which showed

positional vertigo, but now he wants an echocardiogram and a nuclear

study of the heart.

>

> I was just wondering if anybody else had experienced anything like

this. Also my incision from my surgery in january has still not

completely closed up, more than likely due to EDS.

>

>

>

>

[Guest guest]

Hi !

I'm glad you joined the list! I DO hope I didn't steer you wrong,

and that someone has some ideas for you! Try to be patient, as

sometimes, the posts are heavy and at other times light - but just

know you are not alone, and I will be thinking of you and praying you

get some answers!

Love Lana

> I was just wondering if anybody else had experienced anything like

this. Also my incision from my surgery in january has still not

completely closed up, more than likely due to EDS.

>

>

>

>