Re: Surgery nerves and Prof report

April 26, 2004

Jo,

I will say a prayer for you. Also, good luck. Caro.

April 26, 2004

Jo --

Please be sure you have all my best wishes and prayers for your surgery and

upcoming battery of tests. I am glad you are finally getting some help and Dr

Byrd sounds wonderful.

Hoping all goes well this week ------ I will be keeping you in my thoughts and

prayers.

Love, Patti

Surgery nerves and Prof report

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

April 26, 2004

Jo --

Please be sure you have all my best wishes and prayers for your surgery and

upcoming battery of tests. I am glad you are finally getting some help and Dr

Byrd sounds wonderful.

Hoping all goes well this week ------ I will be keeping you in my thoughts and

prayers.

Love, Patti

Surgery nerves and Prof report

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

April 26, 2004

I'm hoping to arrange for my Dad to get a

message to a friend who can post for me following my surgery though,

so hopefully I'll be able to let you know that I'm okay! I'll

certainly try I promise.

.........That would be great, Jo! I will certainly be saying lots of prayers

for you!!! I'm sure everything will go fine, especially with all of sending

positive, healing energy your way! :-)

So I have to add another

battery of tests to the list following my shoulder recovery...I also

have to have a barium swallow and possibly endoscopies to check out

my oesophagitis problems too. Oh joy...

..........YUK! Tests, tests and more tests! Oh well, girlfriend, one day at

a time, and sometimes a minute at a time! We'll be here to help you through

it ALL, OK?

I'm feeling pretty uptight about where everything is heading and the

fact that Prof feels my Orthopaedic situation is unlikely to be

improved. But in spite of my fears and worries at the consequences,

overall I am just relieved that someone is finally believing,

understanding and doing what he can to help me with the few areas

that might be manageable. It's a big issue after 20 years of

misdiagnosis, mistreated and negligence that has severely hampered

my health and encouraged the progression of my condition.

........Yes, it's very aggravating, isn't it? To think if you could have

found him years ago, or if other doctors would have had a greater interest,

well I think we've all been down that road, and it stinks!

Oh well, I'm trying not to think to much about what's in store when

I'm back on my feet, I just want to concentrate on getting through

this surgery and hopefully making progress form here.

..........Great way of looking at it Jo! You go girl!

I'll be anxious to hear how you're doing, Jo! Just know you have my

thoughts, support and prayers and well wishes.

Love Lana

April 26, 2004

I'm hoping to arrange for my Dad to get a

message to a friend who can post for me following my surgery though,

so hopefully I'll be able to let you know that I'm okay! I'll

certainly try I promise.

.........That would be great, Jo! I will certainly be saying lots of prayers

for you!!! I'm sure everything will go fine, especially with all of sending

positive, healing energy your way! :-)

So I have to add another

battery of tests to the list following my shoulder recovery...I also

have to have a barium swallow and possibly endoscopies to check out

my oesophagitis problems too. Oh joy...

..........YUK! Tests, tests and more tests! Oh well, girlfriend, one day at

a time, and sometimes a minute at a time! We'll be here to help you through

it ALL, OK?

I'm feeling pretty uptight about where everything is heading and the

fact that Prof feels my Orthopaedic situation is unlikely to be

improved. But in spite of my fears and worries at the consequences,

overall I am just relieved that someone is finally believing,

understanding and doing what he can to help me with the few areas

that might be manageable. It's a big issue after 20 years of

misdiagnosis, mistreated and negligence that has severely hampered

my health and encouraged the progression of my condition.

........Yes, it's very aggravating, isn't it? To think if you could have

found him years ago, or if other doctors would have had a greater interest,

well I think we've all been down that road, and it stinks!

Oh well, I'm trying not to think to much about what's in store when

I'm back on my feet, I just want to concentrate on getting through

this surgery and hopefully making progress form here.

..........Great way of looking at it Jo! You go girl!

I'll be anxious to hear how you're doing, Jo! Just know you have my

thoughts, support and prayers and well wishes.

Love Lana

April 26, 2004

I'm hoping to arrange for my Dad to get a

message to a friend who can post for me following my surgery though,

so hopefully I'll be able to let you know that I'm okay! I'll

certainly try I promise.

.........That would be great, Jo! I will certainly be saying lots of prayers

for you!!! I'm sure everything will go fine, especially with all of sending

positive, healing energy your way! :-)

So I have to add another

battery of tests to the list following my shoulder recovery...I also

have to have a barium swallow and possibly endoscopies to check out

my oesophagitis problems too. Oh joy...

..........YUK! Tests, tests and more tests! Oh well, girlfriend, one day at

a time, and sometimes a minute at a time! We'll be here to help you through

it ALL, OK?

I'm feeling pretty uptight about where everything is heading and the

fact that Prof feels my Orthopaedic situation is unlikely to be

improved. But in spite of my fears and worries at the consequences,

overall I am just relieved that someone is finally believing,

understanding and doing what he can to help me with the few areas

that might be manageable. It's a big issue after 20 years of

misdiagnosis, mistreated and negligence that has severely hampered

my health and encouraged the progression of my condition.

........Yes, it's very aggravating, isn't it? To think if you could have

found him years ago, or if other doctors would have had a greater interest,

well I think we've all been down that road, and it stinks!

Oh well, I'm trying not to think to much about what's in store when

I'm back on my feet, I just want to concentrate on getting through

this surgery and hopefully making progress form here.

..........Great way of looking at it Jo! You go girl!

I'll be anxious to hear how you're doing, Jo! Just know you have my

thoughts, support and prayers and well wishes.

Love Lana

April 26, 2004

Jo,

Don't worry about the HLA B27+ bit. I was diagnosed HLA B27+ at age

12 and all this means is that you COULD have a slightly higher risk

of some things such as some kinds of arthritis and other such things

like Ankolysing Spondolitis etc. I was diagnosed with HLA B27+,

Sacroilitis, seronegative spondoloarthritis and juvinnile rheumatoid

arthritis at age 12 but have NOT gone on to Chron's or AS etc, I do

still have SIJ problems and such and my Nana had Ulcerative Colitis

(UC) but apart from IBS I have been lucky to escape these other

possible problems.

From what I have read HLA B27+ only increases the risk by something

like 10% or there abouts.

Here are a few web sites I have found over the years about HLA B27+

(as found in our lovely blood work/tests).

http://www.emedicine.com/oph/topic721.htm

http://www.ucl.ac.uk/~regfjxe/MHC.htm

http://www.risg.org/infosupp/research/spo/

http://health.groups.yahoo.com/group/ceda/message/28466 - THis was a

message posted to me by a member Pam I haven't heard from here for

ages.

http://health.groups.yahoo.com/group/ceda/message/28447 0 This one is

from Pam too (she was like the resident Immunologist here when I

joined).

Sorry that you have this on top of everything else but at least the

Prof. Seems very thorough.

Good Luck for your surgery and your trussed up turkey recovery.

Sharon

> I just wanted to write a quick message to let you know that I wont

> be around for a while after tomorrow as the hospital want me

> admitted on Wednesday morning for tests, examinations and overnight

> monitoring before my shoulder surgery on Thursday. I will be around

> tomorrow, but probably be a bag of nerves so I thought I would send

> a note and hugs to everyone while my hands aren't shaking too much

> to type! lol

>

> I am a bit nervous now to be honest I just don't know what is going

> to happen in the surgery yet. I'm just praying that it works as

> stabilising my shoulder would really help me to walk - sounds daft

> doesn't it? But if I can use both of my crutches again I may be

able

> to avoid the wheelchair for a little longer and make it easier for

> me to use a manual chair when I need to as well. So fingers crossed

> that it works. Thank you for all your support and helping take my

> mind off things - you really are fabulous people!! I'm hoping to be

> home by the weekend if things go well, so I'll try to get a message

> up once I get back. I'm hoping to arrange for my Dad to get a

> message to a friend who can post for me following my surgery

though,

> so hopefully I'll be able to let you know that I'm okay! I'll

> certainly try I promise.

>

> Oh that's what I meant to tell you - I got a great four page letter

> from Prof Bird today which is both helpful and scary. He is

> incredibly thorough and covered every aspect of what he knows so

far

> and where we are heading with tests and probabilities. He confirmed

> that I have a mutation of EDS 1 & 3 with Marfanoid characteristics,

> and also pin pointed other areas of concerns including the risk of

> Psoriatic arthropathy and HLA-B27 problems due to my levels and my

> propensity for both due to my inheritance situation. (Psoriasis and

> Chrohns) I'm particularly worried about the HLA B27 situation as I

> have already had problems with sacro-illitis, inflammatory bowel

> disease and arthritic issues in my spine. So I have to add another

> battery of tests to the list following my shoulder recovery...I

also

> have to have a barium swallow and possibly endoscopies to check out

> my oesophagitis problems too. Oh joy...

>

> I'm feeling pretty uptight about where everything is heading and

the

> fact that Prof feels my Orthopaedic situation is unlikely to be

> improved. But in spite of my fears and worries at the consequences,

> overall I am just relieved that someone is finally believing,

> understanding and doing what he can to help me with the few areas

> that might be manageable. It's a big issue after 20 years of

> misdiagnosis, mistreated and negligence that has severely hampered

> my health and encouraged the progression of my condition.

>

> Oh well, I'm trying not to think to much about what's in store when

> I'm back on my feet, I just want to concentrate on getting through

> this surgery and hopefully making progress form here. I am going to

> miss you all terribly over the next few days, but please be sure

> that even when I'm knocked out I'll be thinking of you all and

> sending snoozy good thoughts your way! take care everyone and I

hope

> it's not too long before I'm back with you....albeit one handed and

> trussed up like an oven-ready turkey! ;-)

>

> Love and hugs always to my special CEDA`family,

>

> Jo xxx

April 27, 2004

Jo

Good luck and I hope everything turns out OK for you.Will be thinking of you

and hope for a speedy recovery.

Hugs & Prayers

Betty

Surgery nerves and Prof report

> I just wanted to write a quick message to let you know that I wont

> be around for a while after tomorrow as the hospital want me

> admitted on Wednesday morning for tests, examinations and overnight

> monitoring before my shoulder surgery on Thursday. I will be around

> tomorrow, but probably be a bag of nerves so I thought I would send

> a note and hugs to everyone while my hands aren't shaking too much

> to type! lol

>

> I am a bit nervous now to be honest I just don't know what is going

> to happen in the surgery yet. I'm just praying that it works as

> stabilising my shoulder would really help me to walk - sounds daft

> doesn't it? But if I can use both of my crutches again I may be able

> to avoid the wheelchair for a little longer and make it easier for

> me to use a manual chair when I need to as well. So fingers crossed

> that it works. Thank you for all your support and helping take my

> mind off things - you really are fabulous people!! I'm hoping to be

> home by the weekend if things go well, so I'll try to get a message

> up once I get back. I'm hoping to arrange for my Dad to get a

> message to a friend who can post for me following my surgery though,

> so hopefully I'll be able to let you know that I'm okay! I'll

> certainly try I promise.

>

> Oh that's what I meant to tell you - I got a great four page letter

> from Prof Bird today which is both helpful and scary. He is

> incredibly thorough and covered every aspect of what he knows so far