Re: I'm Official! 1 more thing

[Guest guest]

Dear ,

As for the aorta scan - I've been to 5 Geneticists over the years and have

never heard of them using the aorta scan as a dx tool for Vascular type.

When I was first dx'd back in 97 I was told that after the skin biopsy they

send you for three other tests, back x-ray to check for scoliosis, ultrasound

(echocariogram) looking at aorta size and for MVP and and eye exam looking for

any connective tissue problems with the eye. I was told these tests should be

performed every 3 years or so to monitor and progression or check for new

findings. These are to try and catch early any major problems in those areas to

help prevent blindness or death (not quite sure how the back fits in to those

:-) - may be because if scoliosis is monitored it can be dealt with before it

becomes life changing).

But using the echo of the aorta to dx vascular type? Never heard of such a

thing. Maybe in Marfans but not in EDS.

Hugs,

B.

HEDS, New Jersey, USA

[Guest guest]

Were these 3 tests done regardless of the skin biopsy results, or

only if the skin test showed VEDS?

> When I was first dx'd back in 97 I was told that after the

skin biopsy they send you for three other tests, back x-ray to check

for scoliosis, ultrasound (echocariogram) looking at aorta size and

for MVP and and eye exam looking for any connective tissue problems

with the eye.

[Guest guest]

Were these 3 tests done regardless of the skin biopsy results, or

only if the skin test showed VEDS?

> When I was first dx'd back in 97 I was told that after the

skin biopsy they send you for three other tests, back x-ray to check

for scoliosis, ultrasound (echocariogram) looking at aorta size and

for MVP and and eye exam looking for any connective tissue problems

with the eye.

[Guest guest]

Were these 3 tests done regardless of the skin biopsy results, or

only if the skin test showed VEDS?

> When I was first dx'd back in 97 I was told that after the

skin biopsy they send you for three other tests, back x-ray to check

for scoliosis, ultrasound (echocariogram) looking at aorta size and

for MVP and and eye exam looking for any connective tissue problems

with the eye.

[Guest guest]

Hi , for my son's Dr, she ordered the echo, and extensive eye exam to

determine the type of EDS. No biopsy was done. Had the echo or eye exam showed

something, she would have ordered the biopsy. Cindylouwho.

Re: I'm Official! 1 more thing

Were these 3 tests done regardless of the skin biopsy results, or

only if the skin test showed VEDS?

> When I was first dx'd back in 97 I was told that after the

skin biopsy they send you for three other tests, back x-ray to check

for scoliosis, ultrasound (echocariogram) looking at aorta size and

for MVP and and eye exam looking for any connective tissue problems

with the eye.

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

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

[Guest guest]

Hi , for my son's Dr, she ordered the echo, and extensive eye exam to

determine the type of EDS. No biopsy was done. Had the echo or eye exam showed

something, she would have ordered the biopsy. Cindylouwho.

Re: I'm Official! 1 more thing

Were these 3 tests done regardless of the skin biopsy results, or

only if the skin test showed VEDS?

> When I was first dx'd back in 97 I was told that after the

skin biopsy they send you for three other tests, back x-ray to check

for scoliosis, ultrasound (echocariogram) looking at aorta size and

for MVP and and eye exam looking for any connective tissue problems

with the eye.

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

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

[Guest guest]

Hi , for my son's Dr, she ordered the echo, and extensive eye exam to

determine the type of EDS. No biopsy was done. Had the echo or eye exam showed

something, she would have ordered the biopsy. Cindylouwho.

Re: I'm Official! 1 more thing

Were these 3 tests done regardless of the skin biopsy results, or

only if the skin test showed VEDS?

> When I was first dx'd back in 97 I was told that after the

skin biopsy they send you for three other tests, back x-ray to check

for scoliosis, ultrasound (echocariogram) looking at aorta size and

for MVP and and eye exam looking for any connective tissue problems

with the eye.

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

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

[Guest guest]

Thanks, that is good to know.

> Hi , for my son's Dr, she ordered the echo, and extensive

eye exam to determine the type of EDS. No biopsy was done. Had the

echo or eye exam showed something, she would have ordered the biopsy.

Cindylouwho.

>

[Guest guest]

Re: Re: I'm Official! 1 more thing

Hi , for my son's Dr, she ordered the echo, and extensive eye exam to

determine the type of EDS. No biopsy was done. Had the echo or eye exam showed

something, she would have ordered the biopsy. Cindylouwho.

Cindy -what were they looking for in the eye??? When I went to the

opthamologist in March she looked for angioid streaks but both and I were

clear of them.

Bonnie

[Guest guest]

Dear ,

In my case they were done regardless of the skin biopsy results. All EDSers

can have MVP as well as severe scoliosis or connective tissue problems with the

eye, not just VEDS.

Also, a lot of insurances will cover a second opinion, some even give it

more coverage than the first dx (Cigna would give you 100% coverage for a 2nd dx

whereas only 80% for regular doc visit). So do check with your insurance about

it, specially since the VEDS question is a concern of yours that you would like

answered.

Hugs,

B.

HEDS, New Jersey, USA

[Guest guest]

From: Bonnie Heintskill To: ceda

Cindy -what were they looking for in the eye??? When I went to the

opthamologist in March she looked for angioid streaks but both and I were

clear of them.

Bonnie

****************************************************

The Dr didn't say exactly. She did say The eye can sometimes help her decide

which type of EDS is there. I'm guessing they are looking for all those things

listed in the article about EDS and the eye.

http://www.ehlersdanlos.ca/eyes.html

Cindylouwho

[Guest guest]

Hi Bonnie,

When I was at the optho., they looked for keratoconus... I am not

sure if I spelled it right now, but... It is a cone shaping of the

lense of the eye, if I remember right, which can occur in EDS and

often occur in Marfan's...

hugs,

Aase Marit

> From: Bonnie Heintskill To: ceda

>

>

>

> Cindy -what were they looking for in the eye??? When I went to

>the opthamologist in March she looked for angioid streaks but both

> and I were clear of them.

> Bonnie

>

> ****************************************************

> The Dr didn't say exactly. She did say The eye can sometimes help

>her decide which type of EDS is there. I'm guessing they are looking

>for all those things listed in the article about EDS and the eye.

>http://www.ehlersdanlos.ca/eyes.html

> Cindylouwho

>

>

>