my trip to Chicago went well

January 19, 2004

I am glad that your trip went well. I am supposed to see him next month but

don't think that Chicago in Feb. would be much of a draw and the cost is just

so much!

I think that Dr. Heffez is technically, procedure-wise one of the best there

is. He seems to really take into account the EDS and long term changes and

effects to the spine, etc.. I am five months out and we're not sure how much of

my " other " medical junk is going to be affected by the surgery. Dr. H. said it

would be 6mos to a year. Too much damage had already been done to the cord

though for many problems. . Like you, I was prescribed the soft collar forever.

It does feel so much better with it. Maybe I'll put rhinestones on it!!

Hope you get some helpful news from the other tests, .

Take care,

January 19, 2004

I am glad that your trip went well. I am supposed to see him next month but

don't think that Chicago in Feb. would be much of a draw and the cost is just

so much!

I think that Dr. Heffez is technically, procedure-wise one of the best there

is. He seems to really take into account the EDS and long term changes and

effects to the spine, etc.. I am five months out and we're not sure how much of

my " other " medical junk is going to be affected by the surgery. Dr. H. said it

would be 6mos to a year. Too much damage had already been done to the cord

though for many problems. . Like you, I was prescribed the soft collar forever.

It does feel so much better with it. Maybe I'll put rhinestones on it!!

Hope you get some helpful news from the other tests, .

Take care,

January 19, 2004

I am glad that your trip went well. I am supposed to see him next month but

don't think that Chicago in Feb. would be much of a draw and the cost is just

so much!

I think that Dr. Heffez is technically, procedure-wise one of the best there

is. He seems to really take into account the EDS and long term changes and

effects to the spine, etc.. I am five months out and we're not sure how much of

my " other " medical junk is going to be affected by the surgery. Dr. H. said it

would be 6mos to a year. Too much damage had already been done to the cord

though for many problems. . Like you, I was prescribed the soft collar forever.

It does feel so much better with it. Maybe I'll put rhinestones on it!!

Hope you get some helpful news from the other tests, .

Take care,

January 19, 2004

Hello all,

I have many emails to try to read and answer (as long as I am able to sit up,

that is), but wanted to give a quick report on my Chicago visit to Dr. Heffez,

neurosurgeon, last week. He reviewed the detailed MRI which he did on me last

Sept. with my cervical spine in different positions (flat, flexed, extended).

There is no question that I have both spinal stenosis and spinal cord

impingement to a significant degree (both above and below my 1999 c-spine

fusion). I could see the narrowing and pinching of my spinal cord on the films

from across the room. Dr. Heffez's question is whether or not my Ehlers-Danlos

Syndrome and my many attendant problems (POTS, IBS, slow healing, defective

connective tissue, etc.) make me a good candidate for a radical surgical

intervention at this time. He said, " If not for the Ehlers-Danlos, I wouldn't

hesitate to schedule you for a laminectomy with posterior incision as well as

further fusion to completely immobilize your neck permanently....the problem is,

your body has so many other things going on that I don't know how well you could

tolerate this procedure or how successful it would be long term. Wearing your

soft cervical collar for the rest of your life may be the lesser of two evils. "

He mentioned wanting to do a cervical myeleogram, but I told him to please,

please, please try something else first. I've had two previous myleograms, and

had a horrific experience both times. The second time, I was flat of my back

for 2 weeks and had to have a blood patch. Yuk. He then sent me downstairs for

a CT scan with a " double dose " of dye, and scanned my neck in such thin pictures

that they literally moved me through the machine in about 1/4 to 1/2 inch

increments. He ordered it done with me laying flat, neck extended, and neck

flexed (OW!). He is going to call me with the results of that. I am praying he

sees what he is looking for on the CT scan and that I don't have to submit

myself for another myeleogram. He did, though, write me a Rx for a myeleogram

and another diagnostic test to see if my bladder functioning is being

neurologically effected by the spinal cord pinching--to be done at Baylor

Hospital in Dallas and the results sent to him in Chicago. I did tell him that

my last series of 3 cervical epidurals (ending one week ago) did seem to provide

me some temporary pain relief---they just don't change anything for the better

inside my deteriorating vertebrae, and I can't have them too often. I feel it

was worth the trip to see him, though he gave me no definite answers. I can and

do appreciate his being conservative and his taking into account my EDS and

other medical problems. It was a quick trip, but the kids did fine with my

neighbor (an RN) looking in on them, and I got to eat some truly wonderful food

(both Greek and authentic Italian). Boy, is it ever COLD in The Windy City!!!

Lake Michigan looked frozen over, and I just know that Toledo next month will be

no different. Wowser! NOW.....I'm done with my long epistle.........how is

everyone?

Love,

~LoneStarRose~

(~~)

January 19, 2004

We could be the newest fashion craze. ...

Since I live in the Chicago suberbs, I think a nice fleece cover

would be helpful right about now as it is 8 degrees F.

Robin

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

You can buy battery operated thermal electric socks - how about

making a fleece cover for your cervical collar the same way? In

fact, since the socks are generally knee-highs, you could probably

figure out some way to use one of them inside the collar/cover.

Just a thought. (And it might be 8 above ambient - but what is your

wind chill down to?)

Mike

January 19, 2004

We could be the newest fashion craze. ...

Since I live in the Chicago suberbs, I think a nice fleece cover

would be helpful right about now as it is 8 degrees F.

Robin

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

You can buy battery operated thermal electric socks - how about

making a fleece cover for your cervical collar the same way? In

fact, since the socks are generally knee-highs, you could probably

figure out some way to use one of them inside the collar/cover.

Just a thought. (And it might be 8 above ambient - but what is your

wind chill down to?)

Mike

January 19, 2004

In a message dated 1/19/2004 6:29:36 PM Central Standard Time, mike@...

writes:

I HATE

cold weather.

AMEN!!! I don't know how you stood that!

Love Lana

January 19, 2004

In a message dated 1/19/2004 6:29:36 PM Central Standard Time, mike@...

writes:

I HATE

cold weather.

AMEN!!! I don't know how you stood that!

Love Lana

January 19, 2004

In Guelph tonight the wind chill is back down to -27C which is even below

oF for those of you in the USA.

C.

Anything warming is good to me!

January 19, 2004

In Guelph tonight the wind chill is back down to -27C which is even below

oF for those of you in the USA.

C.

Anything warming is good to me!

January 19, 2004

In Guelph tonight the wind chill is back down to -27C which is even below

oF for those of you in the USA.

C.

Anything warming is good to me!

January 19, 2004

> In Guelph tonight the wind chill is back down to -27C which is

even below oF for those of you in the USA.

>

> C.

>

> Anything warming is good to me!

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

That's practically tropical.

In January 1985 when I was working for Chevron in Anchorage, I had

to go up to Prudhoe Bay on business for a couple of days. The

absolute outside temperature was minus 97F. The windchill brought

it down to minus 120F. Barb and her mother couldn't wait to see the

pictures from my trip. I never got ONE. I had fresh, brand new

batteries in the camera. The cold sucked the life out of the

batteries before I could even focus and snap. That's the coldest

I've ever experienced ... and once was enough, thank you. I HATE

cold weather.

January 19, 2004