RE: Classical EDS too?/Bernie

[Guest guest]

Yes Bernie I appreciate knowing my enemy. Knowledge is power. Dylan's future

could have been so much worse had these things not been found. And some of these

things can be fixed, or slowed down.

The preliminary report isn't a normal thing I don't think. Dr. Nazli did that so

we could get things started. The report won't come in for 2 months and some of

these things need immediate attention. All the test results aren't finished yet.

This was her way of getting the word out to his Drs. quick. I have already

forwarded the email to his pain Dr, but his primary doesn't have an email, so

I'll print it out and take it when Dylan sees him next week.

He did have a MRA which was normal. The echo showed something that they have

found in every EDSer, that is not seen in " normal " folks. They think this may be

a new DX tool for EDS since it has shown up in every person tested so far. They

did a MRI of the thorasic and lumbar as part of the protocol. That's when they

found the bulging disk. The Dexascan found the low bone density in the hips.

They suggest a MRI of the cervical here at home. His physical exam showed a

problem at C7.

How am I? Well, overwhelmed I guess. I can't get anything done, I can't sleep,

and my mind won't shut off. He is so much worse than I thought. He's so young

for most of these things to show up, I can't imagine what he'll be like in 20

years. His new heart findings are my first thing to address, but I'm so worried

about C7. One wrong turn or car accident and they said he could be paralyzed.

I'm wondering if he is going to need fusion to protect the spinal cord. Fusion

is some thing that I always said NEVER to, but I suppose we can't ever say

never. And now with them saying he may have Classical and type 3, I wonder if

he'll hold stitches. See how my mind just keeps rambling?

I'll stop here. I could ramble forever. I guess I need time to get uses to all

this.

Talk to you later.

Cindylouwho

RE: Classical EDS too?/NIH report

Hi Cindy:

How are you....particularly in view of all this information, but you

have been very worried and just knew a great deal was going on with

Dylan. Now you have the info to move ahead with possible treatments and

much greater understanding of the core problems. Know thine enemy, so

to speak.

Do you know if it is standard practice for study participants to

receive a preliminary report( by e-mail I assume) and especially in this

short time? I have always found Dr.'s notes to be devoid of reference

to the gravity of or prognosis for a patient....just factual. I suspect

this preliminary report is indicative of their concern. They do talk of

the need for prompt work-up and recommendations and identify the AV

Block as the No. 1 item and also the autonomic dysfunction. I believe

you said he had an echo and MRA of the Aorta so perhaps those tests are

normal since there was no mention of abnormality in this report,

particularly as the AV block was identified. Here's hoping!!

It seems unusual that they chose not to do an MRI of the cervical or

thoracic spine despite the abnormalities they and you observed.

[Guest guest]

Cindy

I have been reading your emails and I feel so bad your son has to endure so

much. It must be heartbreaking for you to watch him. When our passed away

the only thing that I was " thankful " for at the time was that he didn't

suffer. As parents we bear so much and would do anything to take our child's

pain away. I commend you on how strong you seem to be through this all and

just wanted you to know I hope & pray things get easier.

Betty

P.S.

What did you mean that the echo showed what every EDSer have. I had an echo

when I found out I had VEDS and it was normal??? It seems there is always

something to learn.

Thanks

RE: Classical EDS too?/NIH report

>

>

> Hi Cindy:

> How are you....particularly in view of all this information, but you

> have been very worried and just knew a great deal was going on with

> Dylan. Now you have the info to move ahead with possible treatments and

> much greater understanding of the core problems. Know thine enemy, so

> to speak.

>

> Do you know if it is standard practice for study participants to

> receive a preliminary report( by e-mail I assume) and especially in this

> short time? I have always found Dr.'s notes to be devoid of reference

> to the gravity of or prognosis for a patient....just factual. I suspect

> this preliminary report is indicative of their concern. They do talk of

> the need for prompt work-up and recommendations and identify the AV

> Block as the No. 1 item and also the autonomic dysfunction. I believe

> you said he had an echo and MRA of the Aorta so perhaps those tests are

> normal since there was no mention of abnormality in this report,

> particularly as the AV block was identified. Here's hoping!!

>

> It seems unusual that they chose not to do an MRI of the cervical or

> thoracic spine despite the abnormalities they and you observed.

>

>

>

>

[Guest guest]

Cindy;

In this situation a rambling mind seems pretty normal to me. I found it

so immensely helpful to ramble on this site and receive feedback from

others who have had similar experiences and provide knowledgeable

feedback. Going through this stuff provides so many little strategies

for coping with issues. Even the prelim report will help you get the

ball rolling.

I just kept thinking of you....even first thing this am.

Bernie

Re: Classical EDS too?/Bernie

Yes Bernie I appreciate knowing my enemy. Knowledge is power. Dylan's

future could have been so much worse had these things not been found.

And some of these things can be fixed, or slowed down.

The preliminary report isn't a normal thing I don't think. Dr. Nazli did

that so we could get things started. The report won't come in for 2

months and some of these things need immediate attention. All the test

results aren't finished yet. This was her way of getting the word out

to his Drs. quick. I have already forwarded the email to his pain Dr,

but his primary doesn't have an email, so I'll print it out and take it

when Dylan sees him next week.

He did have a MRA which was normal. The echo showed something that they

have found in every EDSer, that is not seen in " normal " folks. They

think this may be a new DX tool for EDS since it has shown up in every

person tested so far. They did a MRI of the thorasic and lumbar as part

of the protocol. That's when they found the bulging disk. The Dexascan

found the low bone density in the hips. They suggest a MRI of the

cervical here at home. His physical exam showed a problem at C7.

How am I? Well, overwhelmed I guess. I can't get anything done, I can't

sleep, and my mind won't shut off. He is so much worse than I thought.

He's so young for most of these things to show up, I can't imagine what

he'll be like in 20 years. His new heart findings are my first thing to

address, but I'm so worried about C7. One wrong turn or car accident and

they said he could be paralyzed. I'm wondering if he is going to need

fusion to protect the spinal cord. Fusion is some thing that I always

said NEVER to, but I suppose we can't ever say never. And now with them

saying he may have Classical and type 3, I wonder if he'll hold

stitches. See how my mind just keeps rambling?

I'll stop here. I could ramble forever. I guess I need time to get uses

to all this.

Talk to you later.

Cindylouwho