new member

[Guest guest]

> I just read the post about " forgetting the things we used to be

able to do. " Boy, does that sum it up! Yeah, here I am at 55 years

of age, thinking that there were things that I just couldn't do

anymore because of my age. Baloney!! I just kept adjusting and

adjusting and passing things up because I knew the pain would be too

bad. I remember making a list of errands I needed to do, getting in

my car and driving to town -- and then not doing half of the things

on the list because it was just too difficult to get out of my car

and walk to the store and then get back in my car. My " life " was

shrinking. Knowing I had to do SOMETHING (surgery) was like being

caught between the devil and the deep blue sea. Until I hit this

message board and started reading the stories people told. I'd read

about resurfacing (Internet), but the local surgeon was

contemptuously dismissive. For once I decided that I was going to do

the best I could do for myself! And I contacted Dr Gross's office.

Now, 8-9 weeks post-op, I am astonished at the difference in my

quality of life. And I'm not even totally healed yet! I'm no great

athlete, not even a " real " hiker, or swimmer, or cyclist, or any of

those things. But I AM and always have been a very physically active

person. The more unself-conscious I am of my body, the healthier I

am. The more unself-conscious my movement, the healthier I am. This

resurfacing procedure is a miracle... Joyce (Dr Gross, LHR, 2/2/04)

> Joyce! I'm a new member on this site and just read your post. I

am 51 and have recently been diagnosed with protrusio acetabulum for

which my OS says I need bilat THR's...I'm researching the possiblily

of the resurfacing...where is Dr. Gross located? I think I'm alot

like you...from your description of yourself...I hope I am poting

correctly...this is my first post to this site. Thank you for

encouraging me with your story! Susette

>

[Guest guest]

> I just read the post about " forgetting the things we used to be

able to do. " Boy, does that sum it up! Yeah, here I am at 55 years

of age, thinking that there were things that I just couldn't do

anymore because of my age. Baloney!! I just kept adjusting and

adjusting and passing things up because I knew the pain would be too

bad. I remember making a list of errands I needed to do, getting in

my car and driving to town -- and then not doing half of the things

on the list because it was just too difficult to get out of my car

and walk to the store and then get back in my car. My " life " was

shrinking. Knowing I had to do SOMETHING (surgery) was like being

caught between the devil and the deep blue sea. Until I hit this

message board and started reading the stories people told. I'd read

about resurfacing (Internet), but the local surgeon was

contemptuously dismissive. For once I decided that I was going to do

the best I could do for myself! And I contacted Dr Gross's office.

Now, 8-9 weeks post-op, I am astonished at the difference in my

quality of life. And I'm not even totally healed yet! I'm no great

athlete, not even a " real " hiker, or swimmer, or cyclist, or any of

those things. But I AM and always have been a very physically active

person. The more unself-conscious I am of my body, the healthier I

am. The more unself-conscious my movement, the healthier I am. This

resurfacing procedure is a miracle... Joyce (Dr Gross, LHR, 2/2/04)

> Joyce! I'm a new member on this site and just read your post. I

am 51 and have recently been diagnosed with protrusio acetabulum for

which my OS says I need bilat THR's...I'm researching the possiblily

of the resurfacing...where is Dr. Gross located? I think I'm alot

like you...from your description of yourself...I hope I am poting

correctly...this is my first post to this site. Thank you for

encouraging me with your story! Susette

>

[Guest guest]

Hi, Suzette. Dr Gross is in Columbia, S.C. He has a wonderful web-site:

www.grossortho.com It has a great animation of the hip resurfacing

procedure. There are phone numbers, etc. on his site, also. His whole team is

tops. Best, Joyce (Dr Gross, LHR, 2/04)

[Guest guest]

> Hi, Suzette. Dr Gross is in Columbia, S.C. He has a wonderful web-

site: www.grossortho.com It has a great animation of the hip

resurfacing procedure. There are phone numbers, etc. on his site,

also. His whole team is tops. Best, Joyce (Dr Gross, LHR, 2/04)

>

>

[Guest guest]

Hi Steamboatskigirl

Just read your posting with the question of having children after a

resurfacing. I've had 2 children - one born 2 years post op and the

other 7 years post op. When I got pregnant with the first there was

no knowledge of the metal ions affecting babies. I asked my

Consultant - Mr McMinn about having babies at that time and he felt

there would be no reason why I shouldn't (although his advise maybe

different now) Both of my children were born very healthy - they are

now 10yrs & 5 yrs and have shown no adverse affects and have had very

normal physical and mental development.

Hope this helps.

Left hip McMinn 1991.

> Hello friends -

>

> I am a 35 yo female. I am scheduled for hip resurfacing surgery

with

> Dr. Gross in early May.

>

> I love to ski, mountain bike, rock climb, etc. & I am choosing

this

> option, because I want to return to that quality of life a.s.a.p.

> Honestly, I can't imagine life without being able to do these

things.

>

> I have some anxieties, because I am a female, & a 'special case'.

>

> I have JRA & have been on steroids on & off since age 2. The

doctors

> tell me that due to some osteoporosis, my risk of neck fracture is

> somewhat greater. They also tell me that I am at higher risk of

> infection, because I have been on medicines which supress my immune

> system for so long. I am currently down to 10mg of Prednisone &

that

> is the lowest dose I can tolerate for now.

>

> I have decided that I want to take the risk for the resurfacing,

> because as I see it, the worst case scenario will be that this will

> be converted to a total hip if it doesn't work.

>

> My other concern is that I want to have children, & I have learned

> that the metal parts rubbing together release particles in the

> bloodstream. The doctors tell me there is just not enough research

> yet to determine how this may affect a fetus.

>

> If any of you have a similar situation or information that might

help

> it would be grately appreciated. One of the things I most

appreciate

> about this situation is how compassionate & helpful others have

been.

>

> Thank you to everyone out there for being on line & sharing your

> experiences.

>

> steamboatskigirl

[Guest guest]

Hi Steamboatskigirl!

If you look in the archives, there was a thread about metal ions a

couple of months ago, probably in February. One of the members researched

the question, crunched the numbers, and came up with an answer that the

amount of chromium ions released from wear amounted to a fraction of the

amount present in a multiple vitamin with mineral tablet! There may not be

enough evidence to give you an ironclad assurance, but it seems that if the

chromium amounts in question are less than in a standard vitamin/mineral

supplement, the risk to the fetus is probably small to non-existant. Women

don't stop taking vitamins and minerals when they're pregnant.

Also, the metal on metal THR implants are made from the same kind of

steel as the resurfacing devices. They have the same potential for shedding

metal particles. If you go ahead with the resurfacing in May, you'll be

able resume the activities you love and regain lost muscle strength. You're

going to need strong healthy hips to carry the extra weight of pregnancy.

Ligaments loosen in pregnancy to allow for the stretching involved in

delivery. A resurfacing device is much less likely to dislocate under these

conditions than a THR.

Discuss your concerns with Dr. Gross ASAP. Hopefully, he'll reassure

you that the the risk/benefit ratio favors a healthy mother-to-be with

sturdy resurfaced hip(s) vs. a mother-to-be in constant pain with a less

than optimal fitness level. Let us know what he says about this.

rBHR 3/3/04 De Smet

Re: New member

> Hi Steamboatskigirl

>

> Just read your posting with the question of having children after a

> resurfacing. I've had 2 children - one born 2 years post op and the

> other 7 years post op. When I got pregnant with the first there was

> no knowledge of the metal ions affecting babies. I asked my

> Consultant - Mr McMinn about having babies at that time and he felt

> there would be no reason why I shouldn't (although his advise maybe

> different now) Both of my children were born very healthy - they are

> now 10yrs & 5 yrs and have shown no adverse affects and have had very

> normal physical and mental development.

>

> Hope this helps.

>

>

>

> Left hip McMinn 1991.

>

>

> > Hello friends -

> >

> > I am a 35 yo female. I am scheduled for hip resurfacing surgery

> with

> > Dr. Gross in early May.

> >

> > I love to ski, mountain bike, rock climb, etc. & I am choosing

> this

> > option, because I want to return to that quality of life a.s.a.p.

> > Honestly, I can't imagine life without being able to do these

> things.

> >

> > I have some anxieties, because I am a female, & a 'special case'.

> >

> > I have JRA & have been on steroids on & off since age 2. The

> doctors

> > tell me that due to some osteoporosis, my risk of neck fracture is

> > somewhat greater. They also tell me that I am at higher risk of

> > infection, because I have been on medicines which supress my immune

> > system for so long. I am currently down to 10mg of Prednisone &

> that

> > is the lowest dose I can tolerate for now.

> >

> > I have decided that I want to take the risk for the resurfacing,

> > because as I see it, the worst case scenario will be that this will

> > be converted to a total hip if it doesn't work.

> >

> > My other concern is that I want to have children, & I have learned

> > that the metal parts rubbing together release particles in the

> > bloodstream. The doctors tell me there is just not enough research

> > yet to determine how this may affect a fetus.

> >

> > If any of you have a similar situation or information that might

> help

> > it would be grately appreciated. One of the things I most

> appreciate

> > about this situation is how compassionate & helpful others have

> been.

> >

> > Thank you to everyone out there for being on line & sharing your

> > experiences.

> >

> > steamboatskigirl

>

>

>

>

>

[Guest guest]

Hi Sascha,

Don't know where you live, if it is Europe (the continent), check this

internet site: www.heup.be. If you are from america I think there will be

loads of people who can give you very good information. And in the UK there

will be some other surgeons and internet sites.

Like many I have had to walk the same path as you are discovering now. Even

after a third opinion nobody told me of the existence of the BHR method. It

is not a very nice thing to find out a lot of the of given information is

due to money and proudness...atleast to my opinion.

I guess you will be able to find out in a short time period if you will be a

suitable candidate. Some people have managed to take digital photo's of

their x-rays. Don't know if those people had some feed-back allready but I

guess that would be the quickest way to find out. Otherwise you wil have to

set up an appointment with a nearby surgeon who does perform the

resurfacing.

Since your surgery is not within a very short time period I am sure you'll

find out all you need to know. Good luck! (This site is very good and people

are very wiling to share information)

Regards, Mijke

----Original Message Follows----

Hi all, just found this site, looks very good so far. I am a 34 years and am

awaiting a total hip replacement due in December. I have just read the info.

on resurfacing and am wondering why my consultant has not mentioned this to

me, could it be because I was born with a congenital dislocated hip (left

side) and had five ops to correct this. i would be very grateful for any

info. It doesn't sound as invasive as hip replacements, thanks Sacha

[Guest guest]

Sacha

I had a congential dislocated hip and have been told

by one surgeon that I cant have a BHR and another one

says that I can. I am waiting to go to another

surgeon to hear his opinion too.

My xrays arent great and my femoral head is somewhat

disformed making the operation difficult but possible

according to one!

You dont stand to loose if you try asking, you just

stand to gain. It may be that you end up with a THR,

but at least you will know that you tried your best.

Let me know if you want to know anything else.

Good luck

Liney

___________________________________________________________ALL-NEW Yahoo!

Messenger - sooooo many all-new ways to express yourself

http://uk.messenger.yahoo.com

[Guest guest]

Hello Sacha,

I have been resurfaced 10 days ago, by a surgeon in Nottingham in

England. I had undiagnosed congenital hip dysplasia, and according

to my surgeon the most deformed femoral head he had ever worked

with. He even presented my x rays and scans at a conference of

Birmingham Hip Resurfacers in Birmingham last week. My femoral head

looked like a piece of knarled driftwood!

I was told that there was a 75% chance of the operation being

successful, and I have to be very careful for the next 6 weeks, but

I am amazed by the progress. The alternative for me was a THR butI

was very happy that I was in the hands of a very competent surgeon

who planned on doing the best for me. It is worth trying to find a

very experienced surgeon who is prepared to take on difficult cases,

like ours.

Best wishes,

> Hi all, just found this site, looks very good so far. I am a 34

years and am awaiting a total hip replacement due in December. I

have just read the info. on resurfacing and am wondering why my

consultant has not mentioned this to me, could it be because I was

born with a congenital dislocated hip (left side) and had five ops

to correct this. i would be very grateful for any info. It doesn't

sound as invasive as hip replacements, thanks Sacha

>

>

>

[Guest guest]

Hello Sacha,

I have been resurfaced 10 days ago, by a surgeon in Nottingham in

England. I had undiagnosed congenital hip dysplasia, and according

to my surgeon the most deformed femoral head he had ever worked

with. He even presented my x rays and scans at a conference of

Birmingham Hip Resurfacers in Birmingham last week. My femoral head

looked like a piece of knarled driftwood!

I was told that there was a 75% chance of the operation being

successful, and I have to be very careful for the next 6 weeks, but

I am amazed by the progress. The alternative for me was a THR butI

was very happy that I was in the hands of a very competent surgeon

who planned on doing the best for me. It is worth trying to find a

very experienced surgeon who is prepared to take on difficult cases,

like ours.

Best wishes,

> Hi all, just found this site, looks very good so far. I am a 34

years and am awaiting a total hip replacement due in December. I

have just read the info. on resurfacing and am wondering why my

consultant has not mentioned this to me, could it be because I was

born with a congenital dislocated hip (left side) and had five ops

to correct this. i would be very grateful for any info. It doesn't

sound as invasive as hip replacements, thanks Sacha

>

>

>

[Guest guest]

Amy, the test is accurate - it's only done by Dr. Byers lab in Seattle.

It's not good news if it comes back positive. Vascular EDS is not good.

You can read about it here. http://www.ednf.org/typesofeds.html

As far as the other symptoms, part of them sound like POTS. As far as

headaches, many of us do get headaches, but I know mine are from Cervical

Spinal Stenosis. It would probably be a good idea for you to see a

rheumatologist or someone who could give you another opinion on whether or

not you should have the skin biopsy for Vascular EDS. This is all just my

opinion though - there are lots of us here, and hopefully, you will hear

from some of them too.

WELCOME to the family, by the way! :-) No matter what, you will make lots

of friends from this list. They are WONDERFUL and very supportive brothers

and sisters, and I love them to death!

Love Lana 0:-)

New member

Hi everyone,

I've been a member of the Chiari malformation group for ages (going on three

years

now) and thought I'd expand my range a bit. I live in the US. i've seen a

lot of doctors

over the past few years, some of which are certain I have EDS, some of which

are

certain I do not. I have not had any genetic tests. I am hypermobile,

bruise easily,

and have heart valve regurgitation. I have annual echocardiograms that so

far have

not shown any changes, in fact the regurg has gotten significantly better

over the

past couple of years.

In 2001 I started having really bad problems with heart palpitations and

rapid heart

rate, dizziness, episodes of near passing out, headaches, problems breathing

etc etc.

That was when the chiari was discovered. I had decompression surgery in

2002, and

although my breathing problems and heart racing improved somewhat, I still

have

most of my old symptoms such as dizziness, headaches, lightheadedness,

confusion,

and fatigue.

So, I'm wondering now...is it possible that some of this is caused by EDS?

I haven't

found a doctor who seems to know much about EDS. Is EDS associated with

migraines? I feel like I've got a migraine nearly all the time.

I'm also wondering if i should have the biopsy test for vascular EDS. My

aunt died last

year of a ruptured cerebral aneurysm at age 55, but otherwise most everyone

in my

family is healthy. I had a normal pregnancy and delivery without

complications in

1999. Does anyone know if this test is accurate, and what it means if it

comes back

positive? I mean, are there varying degress of the vascular type?

Thanks and looking forward to getting to know you all better, Amy

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

[Guest guest]

Amy, the test is accurate - it's only done by Dr. Byers lab in Seattle.

It's not good news if it comes back positive. Vascular EDS is not good.

You can read about it here. http://www.ednf.org/typesofeds.html

As far as the other symptoms, part of them sound like POTS. As far as

headaches, many of us do get headaches, but I know mine are from Cervical

Spinal Stenosis. It would probably be a good idea for you to see a

rheumatologist or someone who could give you another opinion on whether or

not you should have the skin biopsy for Vascular EDS. This is all just my

opinion though - there are lots of us here, and hopefully, you will hear

from some of them too.

WELCOME to the family, by the way! :-) No matter what, you will make lots

of friends from this list. They are WONDERFUL and very supportive brothers

and sisters, and I love them to death!

Love Lana 0:-)

New member

Hi everyone,

I've been a member of the Chiari malformation group for ages (going on three

years

now) and thought I'd expand my range a bit. I live in the US. i've seen a

lot of doctors

over the past few years, some of which are certain I have EDS, some of which

are

certain I do not. I have not had any genetic tests. I am hypermobile,

bruise easily,

and have heart valve regurgitation. I have annual echocardiograms that so

far have

not shown any changes, in fact the regurg has gotten significantly better

over the

past couple of years.

In 2001 I started having really bad problems with heart palpitations and

rapid heart

rate, dizziness, episodes of near passing out, headaches, problems breathing

etc etc.

That was when the chiari was discovered. I had decompression surgery in

2002, and

although my breathing problems and heart racing improved somewhat, I still

have

most of my old symptoms such as dizziness, headaches, lightheadedness,

confusion,

and fatigue.

So, I'm wondering now...is it possible that some of this is caused by EDS?

I haven't

found a doctor who seems to know much about EDS. Is EDS associated with

migraines? I feel like I've got a migraine nearly all the time.

I'm also wondering if i should have the biopsy test for vascular EDS. My

aunt died last

year of a ruptured cerebral aneurysm at age 55, but otherwise most everyone

in my

family is healthy. I had a normal pregnancy and delivery without

complications in

1999. Does anyone know if this test is accurate, and what it means if it

comes back

positive? I mean, are there varying degress of the vascular type?

Thanks and looking forward to getting to know you all better, Amy

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

[Guest guest]

Hi Liz,

and welcome to the CEDA family (we are more of a family than a group)

as you will soon find.

I am Sharon (shazinoz) form Australia and I am 33 and they think I

have HEDS (with possible familial PEDS crossover) as well as many

other familial problems such as autoimmune diseases and cancer and

such.

I am sorry to hear that you have been having such problems with your

health lately but hopefully now that you have the EDS diagnosis

things will get a little better. Although there is NO cure for any

forms of EDS and NO testing for any but VEDS it helps to have a name

and reason as to why your body does the odd things it does.

My main roblems are hypermobility, subluxations and dislocations,

tearing ligaments and such, IBS, and GERD as well as eczema and skin

problems and worst of all I have RSD as well.

Sorry I can't help you with you problems but I just wanted to say

Hello and introduce myself and welcome you to the family.

Jill should be able to help you with doctors and such but I have a

vague feeling I read a post saying she was going away for a little

while, but there are others here who should be able to help you.

Good Luck with your quest for answers and with living with EDS and

welcome to the family.

Sharon (Shazinoz)

> Hello, my name is Liz, and I live in Kingston, Ontario. I was

recently

> labeled with EDS by a hematologist. I am currently awaiting results

of a

> platelet aggregation study, as I have had unexplained GI bleeds for

several

> years. My hematologist says that these platelet problems are a rare

> manifestation of EDS, and are related to a defect in collagen in

the

> vasculature. I have mildly hypermobile joints, gut pain and trouble

> swallowing. My GP and I are certain that my son has also inherited

this.

>

> I also have Syringomyelia, which neurosurgeons at the Chiari

Institute in NY

> are finding may be related to EDS in some people. I had intended to

see

> these doctors in mid August, but am postponing this until my

bleeding

> problems are better understood.

>

> I am looking for info on specialists in the area between Ottawa and

Toronto,

> as well a info on labs in Canada that perform the specialized

testing used

> to identify the EDS type. Any help you can give me would be greatly

> appreciated.

>

> Liz

>

> _________________________________________________________________

> Take advantage of powerful junk e-mail filters built on patented

Microsoft®

> SmartScreen Technology.

> http://join.msn.com/?pgmarket=en-

ca&page=byoa/prem&xAPID=1994&DI=1034&SU=http://hotmail.com/enca&HL=Mar

ket_MSNIS_Taglines

> Start enjoying all the benefits of MSN® Premium right now and get

the

> first two months FREE*.

[Guest guest]

Hi Liz,

and welcome to the CEDA family (we are more of a family than a group)

as you will soon find.

I am Sharon (shazinoz) form Australia and I am 33 and they think I

have HEDS (with possible familial PEDS crossover) as well as many

other familial problems such as autoimmune diseases and cancer and

such.

I am sorry to hear that you have been having such problems with your

health lately but hopefully now that you have the EDS diagnosis

things will get a little better. Although there is NO cure for any

forms of EDS and NO testing for any but VEDS it helps to have a name

and reason as to why your body does the odd things it does.

My main roblems are hypermobility, subluxations and dislocations,

tearing ligaments and such, IBS, and GERD as well as eczema and skin

problems and worst of all I have RSD as well.

Sorry I can't help you with you problems but I just wanted to say

Hello and introduce myself and welcome you to the family.

Jill should be able to help you with doctors and such but I have a

vague feeling I read a post saying she was going away for a little

while, but there are others here who should be able to help you.

Good Luck with your quest for answers and with living with EDS and

welcome to the family.

Sharon (Shazinoz)

> Hello, my name is Liz, and I live in Kingston, Ontario. I was

recently

> labeled with EDS by a hematologist. I am currently awaiting results

of a

> platelet aggregation study, as I have had unexplained GI bleeds for

several

> years. My hematologist says that these platelet problems are a rare

> manifestation of EDS, and are related to a defect in collagen in

the

> vasculature. I have mildly hypermobile joints, gut pain and trouble

> swallowing. My GP and I are certain that my son has also inherited

this.

>

> I also have Syringomyelia, which neurosurgeons at the Chiari

Institute in NY

> are finding may be related to EDS in some people. I had intended to

see

> these doctors in mid August, but am postponing this until my

bleeding

> problems are better understood.

>

> I am looking for info on specialists in the area between Ottawa and

Toronto,

> as well a info on labs in Canada that perform the specialized

testing used

> to identify the EDS type. Any help you can give me would be greatly

> appreciated.

>

> Liz

>

> _________________________________________________________________

> Take advantage of powerful junk e-mail filters built on patented

Microsoft®

> SmartScreen Technology.

> http://join.msn.com/?pgmarket=en-

ca&page=byoa/prem&xAPID=1994&DI=1034&SU=http://hotmail.com/enca&HL=Mar

ket_MSNIS_Taglines

> Start enjoying all the benefits of MSN® Premium right now and get

the

> first two months FREE*.

[Guest guest]

Hi Liz,

Welcome to the list. My name is Cameron and my sons ages 10 and

almost 8 (he reminds us it is less than 4 weeks now) all have hypermobile

EDS. Most of the doctors we see are in Toronto so if you want names etc.

let me know. I was diagnosed at McMaster in Hamilton but the boys were

diagnosed at Sick Kids. As far as I know a skin biopsy only confirms

vascular EDS.

How old is your son?

[Guest guest]

Hi Liz,

Welcome to the list. My name is Cameron and my sons ages 10 and

almost 8 (he reminds us it is less than 4 weeks now) all have hypermobile

EDS. Most of the doctors we see are in Toronto so if you want names etc.

let me know. I was diagnosed at McMaster in Hamilton but the boys were

diagnosed at Sick Kids. As far as I know a skin biopsy only confirms

vascular EDS.

How old is your son?

[Guest guest]

Hi Liz,

Welcome to the list. My name is Cameron and my sons ages 10 and

almost 8 (he reminds us it is less than 4 weeks now) all have hypermobile

EDS. Most of the doctors we see are in Toronto so if you want names etc.

let me know. I was diagnosed at McMaster in Hamilton but the boys were

diagnosed at Sick Kids. As far as I know a skin biopsy only confirms

vascular EDS.

How old is your son?

[Guest guest]

Hi Liz,

Welcome! Great you found this wonderful group!!!

My name is Aase Marit Waage, I am 39 yrs old and

live in Norway. I have the hypermobile type of

EDS, it's been almost 7 yrs now since my

diagnosis. I was finally diagnosed after

searching the web, and finding this group,

although " all of us " were gathered on a different

mailing list back then.

As far as I have understood (I am sure Jill will

correct me if I am wrong), genetic testing of

tissue samples (skin biopsies) to check for EDS

vascular type (formerly called type IV) and

sometimes to point in the direction of some other

types, is done at Dr Byers lab in the US. Even

for Canadians. Not many labs in the world does

these tests... But maybe I'm wrong?

Why don't you give them a call or e-mail to

check? You can find the necessary info at:

http://www.pathology.washington.edu/clinical/collagen/

Good luck!!!

Sincerly,

Aase Marit

>Hello, my name is Liz, and I live in Kingston, Ontario. I was recently

>labeled with EDS by a hematologist. I am currently awaiting results of a

>platelet aggregation study, as I have had unexplained GI bleeds for several

>years. My hematologist says that these platelet problems are a rare

>manifestation of EDS, and are related to a defect in collagen in the

>vasculature. I have mildly hypermobile joints, gut pain and trouble

>swallowing. My GP and I are certain that my son has also inherited this.

>

>I also have Syringomyelia, which neurosurgeons at the Chiari Institute in NY

>are finding may be related to EDS in some people. I had intended to see

>these doctors in mid August, but am postponing this until my bleeding

>problems are better understood.

>

>I am looking for info on specialists in the area between Ottawa and Toronto,

>as well a info on labs in Canada that perform the specialized testing used

>to identify the EDS type. Any help you can give me would be greatly

>appreciated.

>

>Liz

>

>_________________________________________________________________

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>first two months FREE*.

>

>

>

>

>

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

>

[Guest guest]

Hi Liz --

My name is Patti and I have Vascular EDS (Type IV). My diagnosis was made

thru a skin biopsy sent to Dr. Byers at the University of Washington

in Seattle - I believe this is where most (if not all) the testing is done

in the US. I was diagnosed a little over two and a half years ago.

You have certainly found the right place for support and info - the people

in this group are wonderful and very giving and supportive. If you have any

questions I may help you with, please let me know. I'll be more than glad

to do what I can.

Take care, Patti

New Member

> Hello, my name is Liz, and I live in Kingston, Ontario. I was recently

> labeled with EDS by a hematologist. I am currently awaiting results of a

> platelet aggregation study, as I have had unexplained GI bleeds for

several

> years. My hematologist says that these platelet problems are a rare

> manifestation of EDS, and are related to a defect in collagen in the

> vasculature. I have mildly hypermobile joints, gut pain and trouble

> swallowing. My GP and I are certain that my son has also inherited this.

>

> I also have Syringomyelia, which neurosurgeons at the Chiari Institute in

NY

> are finding may be related to EDS in some people. I had intended to see

> these doctors in mid August, but am postponing this until my bleeding

> problems are better understood.

>

> I am looking for info on specialists in the area between Ottawa and

Toronto,

> as well a info on labs in Canada that perform the specialized testing used

> to identify the EDS type. Any help you can give me would be greatly

> appreciated.

>

> Liz

>

> _________________________________________________________________

> Take advantage of powerful junk e-mail filters built on patented

Microsoft®

> SmartScreen Technology.

>

http://join.msn.com/?pgmarket=en-ca&page=byoa/prem&xAPID=1994&DI=1034&SU=htt

p://hotmail.com/enca&HL=Market_MSNIS_Taglines

> Start enjoying all the benefits of MSN® Premium right now and get the

> first two months FREE*.

>

>

>

>

>

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

>

[Guest guest]

Hi Liz --

My name is Patti and I have Vascular EDS (Type IV). My diagnosis was made

thru a skin biopsy sent to Dr. Byers at the University of Washington

in Seattle - I believe this is where most (if not all) the testing is done

in the US. I was diagnosed a little over two and a half years ago.

You have certainly found the right place for support and info - the people

in this group are wonderful and very giving and supportive. If you have any

questions I may help you with, please let me know. I'll be more than glad

to do what I can.

Take care, Patti

New Member

> Hello, my name is Liz, and I live in Kingston, Ontario. I was recently

> labeled with EDS by a hematologist. I am currently awaiting results of a

> platelet aggregation study, as I have had unexplained GI bleeds for

several

> years. My hematologist says that these platelet problems are a rare

> manifestation of EDS, and are related to a defect in collagen in the

> vasculature. I have mildly hypermobile joints, gut pain and trouble

> swallowing. My GP and I are certain that my son has also inherited this.

>

> I also have Syringomyelia, which neurosurgeons at the Chiari Institute in

NY

> are finding may be related to EDS in some people. I had intended to see

> these doctors in mid August, but am postponing this until my bleeding

> problems are better understood.

>

> I am looking for info on specialists in the area between Ottawa and

Toronto,

> as well a info on labs in Canada that perform the specialized testing used

> to identify the EDS type. Any help you can give me would be greatly

> appreciated.

>

> Liz

>

> _________________________________________________________________

> Take advantage of powerful junk e-mail filters built on patented

Microsoft®

> SmartScreen Technology.

>

http://join.msn.com/?pgmarket=en-ca&page=byoa/prem&xAPID=1994&DI=1034&SU=htt

p://hotmail.com/enca&HL=Market_MSNIS_Taglines

> Start enjoying all the benefits of MSN® Premium right now and get the

> first two months FREE*.

>

>

>

>

>

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

>

[Guest guest]

Hi Liz,

Sorry I didn't get chance to welcome you sooner, I have busy been

eating a lot of carpet lately! I'm so glad that you found the CEDA

family and hope that you will find as much love, support and

friendship as I have here amongst my surrogate parents and siblings

hee-hee!

I wish you lots of luck finding doctors and getting the answers and

help you need, that is often the hardest part - it took me 15 years

of battling doctors ignorance and negligence before I was finally

fully diagnosed recently. I am now thankfully getting the help and

referrals I need,\but sadly for some parts of my body it is too late

to help. Makes me all the more determined to keep raising awareness

and making sure other don't have to suffer the same as I did though.

I think my local hospital could do a conference on EDS now from the

stuff I've thrown at them!!

I am 29 years old and have a variant type of EDS with Marfanoid

mutations (my OS just calls me the mutant as it's a lot easier!) I

currently under the care of Prof Bird here in the UK and feeling

somewhat like a lab rat at present the amount of tests he's

arranging for me. I will be spending a week in his hospital having

assessments very soon too. Hmm, just stick me in a cage, feed me

cheese and call me Mickey! My main areas of problems are extreme

joint instability and recurrent dislocations, bone deformities

particularly in my legs leaving me heading for a wheelchair soon and

possible fusion/amputation, fragile skin, spontaneous bleeding, and

I'm having investigations for Gastric, BP and heart problems too.

But as you can probably tell from this message, my chatter box is

completely unaffected!!

Take care Liz and please know that if you ever need a virtual hug I

have a hold stock load of them :-)

Love.....Jo

xx

[Guest guest]

Hi Liz,

Sorry I didn't get chance to welcome you sooner, I have busy been

eating a lot of carpet lately! I'm so glad that you found the CEDA

family and hope that you will find as much love, support and

friendship as I have here amongst my surrogate parents and siblings

hee-hee!

I wish you lots of luck finding doctors and getting the answers and

help you need, that is often the hardest part - it took me 15 years

of battling doctors ignorance and negligence before I was finally

fully diagnosed recently. I am now thankfully getting the help and

referrals I need,\but sadly for some parts of my body it is too late

to help. Makes me all the more determined to keep raising awareness

and making sure other don't have to suffer the same as I did though.

I think my local hospital could do a conference on EDS now from the

stuff I've thrown at them!!

I am 29 years old and have a variant type of EDS with Marfanoid

mutations (my OS just calls me the mutant as it's a lot easier!) I

currently under the care of Prof Bird here in the UK and feeling

somewhat like a lab rat at present the amount of tests he's

arranging for me. I will be spending a week in his hospital having

assessments very soon too. Hmm, just stick me in a cage, feed me

cheese and call me Mickey! My main areas of problems are extreme

joint instability and recurrent dislocations, bone deformities

particularly in my legs leaving me heading for a wheelchair soon and

possible fusion/amputation, fragile skin, spontaneous bleeding, and

I'm having investigations for Gastric, BP and heart problems too.

But as you can probably tell from this message, my chatter box is

completely unaffected!!

Take care Liz and please know that if you ever need a virtual hug I

have a hold stock load of them :-)

Love.....Jo

xx

[Guest guest]

Hi Liz,

Sorry I didn't get chance to welcome you sooner, I have busy been

eating a lot of carpet lately! I'm so glad that you found the CEDA

family and hope that you will find as much love, support and

friendship as I have here amongst my surrogate parents and siblings

hee-hee!

I wish you lots of luck finding doctors and getting the answers and

help you need, that is often the hardest part - it took me 15 years

of battling doctors ignorance and negligence before I was finally

fully diagnosed recently. I am now thankfully getting the help and

referrals I need,\but sadly for some parts of my body it is too late

to help. Makes me all the more determined to keep raising awareness

and making sure other don't have to suffer the same as I did though.

I think my local hospital could do a conference on EDS now from the

stuff I've thrown at them!!

I am 29 years old and have a variant type of EDS with Marfanoid

mutations (my OS just calls me the mutant as it's a lot easier!) I

currently under the care of Prof Bird here in the UK and feeling

somewhat like a lab rat at present the amount of tests he's

arranging for me. I will be spending a week in his hospital having

assessments very soon too. Hmm, just stick me in a cage, feed me

cheese and call me Mickey! My main areas of problems are extreme

joint instability and recurrent dislocations, bone deformities

particularly in my legs leaving me heading for a wheelchair soon and

possible fusion/amputation, fragile skin, spontaneous bleeding, and

I'm having investigations for Gastric, BP and heart problems too.

But as you can probably tell from this message, my chatter box is

completely unaffected!!

Take care Liz and please know that if you ever need a virtual hug I

have a hold stock load of them :-)

Love.....Jo

xx

[Guest guest]

, I am so sorry you feel so sick and are tired all the time.

Have you checked with your local health department? They often have

docotrs there. You really need to go see a doctor and get treated. it

does not sound like cancer but you need to find out what it is. I

hope that you have told your parents about this? Often you can get

medical help by contacting your health department. Ingrid

> Hey you guys. I just joined a few minutes ago and I need some help

on

> something. I'm almost 19 years old and I'm scared that I might have

> colon cancer or something, I don't know. It might just be all in my

> head cause I tend to think negatively about things and I always

think

> something bad is going to happen to me. I don't know why I act like

> that but I do. Ok, I haven't been feeling well the last couple of

> days or so. The symptoms I have been feeling are: Always tired like

> 24/7, my stomach always hurts, I keep going to the bathroom but I

> still drink alot of water, and the wierdest thing is I have 2

stretch

> marks about 5 inches apart going across my stomach from side to

side

> and I haven't had any children yet, I'm still a virgin! I don't

know

> why I'm always tired, even when I get a good nights sleep or I'm

> sitting down for a long time, I get tired. I drink lots of water

but

> I end up going to the bathroom afterwards and as for my stomach,

its

> really wierd. My stomach will hurt one minute, then feel like its

> hungry the next but when I eat something, its hurts a few minutes

> later and I never get to finish my food or I have a sudden attack

of

> wanting to eat food but my stomach will hurt as I eat it; sometimes

I

> get stomach cramps and have to go to the bathroom and that scares

me

> sometimes. My family can't afford to go see a doctor to check me

out,

> we lost our insurance and are in the process or trying to get a new

> one;I need to get checked out really bad. I really hope I don't

have

> colon cancer or something or that's its something that can be cured

> in no time. It just scares me that I might have this because there

> was a boy in my school, about 15, who died from cancer a few months

> ago and its just really sad. Can anyone tell me what's wrong with

me?

> Does anyone know what the symptoms of having colon cancer are? If

so,

> plz tell me; I would like to know. I hope its nothing serious, our

> school years starts back again in 3 weeks and my birthday is in a

> week and 3 days. If anyone wants to chat with me on yahoo

> messenger, my sn is Angel15_012002 feel free to chat with me

anytime

> or leave me an offline message.

[Guest guest]

Hello Deb,

Welcome to the group. I'm in Kansas also, Wichita. I hope your husband does

well with his treatments.