Newbie to the group

September 22, 2006

You know at first I was sceptical about going to mexico, but after

talking to all of the fine people on this site and hearing of the

wonderful care that everyone has recieved I am actually excited about

going down and totally at peace with my decision. I am more nervous

about the anestesia because I lost a cousin a few years back from a

surgery. she had a reaction to something in the anestesia process.

But i think it was from neglegence of the person who administered it

to her. But even though I have those fears, I am still really at

peace about going to mexico. But like Nina and others have said I am

sure there are bad doctors down there too, just like in the US.

Just do your research and talk to lots of people on this board and

you will make the right choice for yourself.

> >

> > My 70 year old mother and I are scheduled for surgery October 2.

> I

> > was completely relaxed and calm until today when the only person

> I've

> > told beside ny husband told me about a person who died two weeks

> ago

> > (in a town near ours) because she had weight loss surgery done in

> > Mexico. So far, the details are sketchy but it is a friend of her

> > family who went to Mexico for surgery. The doctor could not

> perform

> > it., They sent her home and the next day she was admitted to the

> > hospital in the U.S. with a high fever due to an infection. She

> died

> > that day. The have called him to ask the name of the doctor

> because

> > all they know is that she went to SAnDiego and then across the

> > border...please tell me I'm worrying for no reason and that it

has

> to

> > be a different doctor...I want this surgery so badly.

> >

>

> ---------------------------------

> Messenger with Voice. Make PC-to-Phone Calls to the US (and

30+ countries) for 2¢/min or less.

>

November 24, 2006

Hi paddy and welcome....my name is Donna and I am an adult with JRA. I am 41

and was dx'd at age 4. To begin answering your questions I first want to say

a lot depends on how severe her JRA is. Everyone and every case is different.

It can range from extremely mild causing little to no problems or it can

rage inside and cause a lot of problems. However with so many new meds and

therapies treatment is able to slow down and sometimes halt the disease. I

would

encourage you to talk with her get as many facts as you can but always keep in

mind she is above all an individual and anything can happen to anyone at any

time so if you really like this girl do not let the JRA stop you.

As for genetics and heredity I am the only one in my family, other than my

paternal grandmother (she had RA at an early age). I have 2 boys ages 15 and 11

and neither have JRA.....If you have more questions, dont hesitate ok....

Donna

March 11, 2007

Hi Anita,

Welcome from another Aussie, I am in North Queensland. There are lots of

very knowledgeable and experienced people on this group and I am sure you

will like it. I do.

Cheers

Sharon E

Platypus Dreams

www.platypusdreams.com.au <http://www.platypusdreams.com.au/>

_____

From: [mailto: ]

On Behalf Of zophnix003

Sent: Monday, 12 March 2007 10:35 AM

Subject: Newbie to the Group

Hi Everyone.

I am a newbie to this group, and a beginner at making soaps and bath

scents. Any help to get me started would be wonderful. Thanx

A little about myself : I am 51 with 3 children and I live near

Penrith,N.S.W. Australia. And I a really looking forward to learning

more about this group and the people in it. Again Thanx for accepting

me into the group.

Cheers Anita. A......

March 14, 2007

Hi welcome to the group, I too am fairly new at making soap and have found this

groups information to be so valuable, good luck with you making products.

Carol

Newbie to the Group

Hi Everyone.

I am a newbie to this group, and a beginner at making soaps and bath

scents. Any help to get me started would be wonderful. Thanx

A little about myself : I am 51 with 3 children and I live near

Penrith,N.S.W. Australia. And I a really looking forward to learning

more about this group and the people in it. Again Thanx for accepting

me into the group.

Cheers Anita. A......

December 6, 2007

Dee, I think of you often, wondering how things are going for you. Please

continue to let us know.

This group was my first resource, seven years ago when i was diagnosed. i

don't know what I would have done without it. Jeanette held it together, kept it

going. Before this group, I didn't have a clue, had no idea how to get

information.

Harper

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

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hottest products.

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

December 6, 2007

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

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December 6, 2007

Kathy -

I live in Lake Havasu City and I go to BANNER at Good Sam's for my medical needs

now. I too am in the beginning stages of my disease. Know that these intense

feelings will lift and you will eventually be less emotional and stressed about

the whole thing. In the meantime feel free to email any time and we can talk.

I am 49 and have AIH and PBC and am in the fourth stage of cirrhosis with only

about 15% liver function left but ironically I do NOT have symptoms other than

the itching which is controlled by choloresterymine and urso. I felt so

horribly overwhelmed and can so relate to you and some of the most wonderful

people here brought me out of the brinks of deep depression and worriment in

this group. You will find a natural latching on to Harper who seems to have the

most wonderful words with lots of experience. You will find that certain people

like Hillbilly will respond to everyone and acknowlege each and every person as

though they were her

family. I am leaving others out I know and it's because I know you all every

day but forget things so easily - believe me I remember you ALL - - - and

Jeannette - - forgive my memory but I know you all but just forget names. I

read my emails every day but don't respond much. I stay in touch with prayers

and thoughts of each and every one of you. You'll be caught up in the excitment

of those who have watched others win this battle through transplants and hope

and the deep care and friendship others feel for them. I feel so honored to be

a part of this group and thank you all mostly when I come in here with a

response. Please don't hesitate to email - everyone cares deeply here. If I

can help let me know. Find a way to get in touch with Dr. Little at Banner -

she is wonderful and caring and that place specializes in liver disease. I go

next Thursday for the prognosis and treatment options FINALLY after a whole year

of doing NOTHING

medically for my dying liver. I'm still here so don't worry if you can help

it. Fear can over power you so find a good support somewhere and rely heavily

on them till you feel stronger and know more. It's scary I know - none of us

has done this without that extreme fear and needing hope.

I'm here for you.

Dee

[ ] Newbie to the group

Hi everyone. I was just diagnosed with AIH/PBC overlap. I'm 45 and

scared to death. I have an appointment tomorrow with a new

hepatologist to get medications because my other G.I. doctor doesn't

know how to treat me because I'm allergic to prednisone. I'm taking

the URSO for PBC and am having Heartburn from it. Please tell me

I'm not going to die since I can't take the prednisone. My liver

biopsy showed inconclusive (nothing showed up) but my AMA-M2 is

positive and my ALT & AST are elevated. So far ANA and ASMA are

negative. He says I have early AIH & PBC. Jeanette has been a

great help from your group who also belongs to the PBCers. I would

really welcome and appreciate any advice others are using instead of

prednisone, so I can run it by my new doctor.I would also love to

hear other peoples stories regarding diagnosis and living with AIH.

I'm so scared and depressed right now, I feel like my life is almost

over. I guess I just need some conversing with people in my shoes.

How do we mentally deal with this? I'm depressed and just feel like

staying in bed all day. Any help would be much appreciated.

Is there any AIH support groups that meet in Phoenix, AZ? Please

contact me.

Thank you & GOD BLESS,

Kathy/AZ

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

December 6, 2007

Hi,

sorry to hear about your diagnosis.

I'm sure your doctor can find an alternative medication for you.

I, for example, nowadays take only azathioprine (Azamun) for AIH,

although I did take Prednisone as well for about three years.

In any case, Prednisone is not the only treatment available for

AIH. Are you allergic to Prednisone only, or cortisone/steroids

in general? Are you able to use Prednisone at all? Apparently an

actual, serious Prednisone allergy is quite rare, whereas it does

have rather severe side effects for most users.

Many people with AIH, PBC or both take a medicine that's called

Entocort here - I don't know if the name is the same in the US,

but it contains a steroid called budesonide. Those who use it say

it has far less side effects than Prednisone. Maybe that would

work for you?

You can find plenty of information by googling for budesonide,

AIH and PBC. For example:

http://www.medscape.com/viewarticle/512990_4

http://www.ejinme.com/article/PIIS095362050600166X/abstract

Good luck with the doctor, and try not to worry too much! I'm

sure everything will turn out OK for you.

Jaana

7.12.2007 0:49, wall.kathy kirjoitti:

>

> Hi everyone. I was just diagnosed with AIH/PBC overlap. I'm 45 and

> scared to death. I have an appointment tomorrow with a new

> hepatologist to get medications because my other G.I. doctor doesn't

> know how to treat me because I'm allergic to prednisone. I'm taking

> the URSO for PBC and am having Heartburn from it. Please tell me

> I'm not going to die since I can't take the prednisone. My liver

> biopsy showed inconclusive (nothing showed up) but my AMA-M2 is

> positive and my ALT & AST are elevated. So far ANA and ASMA are

> negative. He says I have early AIH & PBC. Jeanette has been a

> great help from your group who also belongs to the PBCers. I would

> really welcome and appreciate any advice others are using instead of

> prednisone, so I can run it by my new doctor.I would also love to

> hear other peoples stories regarding diagnosis and living with AIH.

> I'm so scared and depressed right now, I feel like my life is almost

> over. I guess I just need some conversing with people in my shoes.

> How do we mentally deal with this? I'm depressed and just feel like

> staying in bed all day. Any help would be much appreciated.

>

> Is there any AIH support groups that meet in Phoenix, AZ? Please

> contact me.

>

> Thank you & GOD BLESS,

>

> Kathy/AZ

December 7, 2007

I responded to your email before opening this one - thank you. I read every day

in here to see how people are doing and wish I could remember everyone more than

I can. I am repeating myself but I am grateful to you for alot of my mental

state in this. You are very good to EVERYONE in this group and you are

sincerely dedicated to helping others from where you once were. I think and

pray for you and your daughter - hope she's doing ok by the way.

Dee

Re: [ ] Newbie to the group

Dee, I think of you often, wondering how things are going for you. Please

continue to let us know.

This group was my first resource, seven years ago when i was diagnosed. i

don't know what I would have done without it. Jeanette held it together, kept it

going. Before this group, I didn't have a clue, had no idea how to get

information.

Harper

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

Check out AOL's list of 2007's

hottest products.

(http://money. aol.com/special/ hot-products- 2007?NCID= aoltop0003000000 0001)

December 7, 2007

Harper said

> This group was my first resource, seven years ago when i was diagnosed. i

> don't know what I would have done without it. Jeanette held it

> together, kept it

> going.

Thanks for the mention, but that SHOULD read JOANNE. She's the

guiding light who, sick as she was, kept on keeping on.

Jeannette

December 7, 2007

Kathy in AZ, would you also be allergic to budesonide? What about cellcept?

You should also ask your doc about Imuran (azathioprine). It's interesting you

were also dx w/AIH, given the negative ANA and ASMA. Maybe you should ask the

biopsy slides to be sent to Mayo for a second opinion.

Trust me, you could live a long life. I was diagnosed with AIH in 1995, and was

also diagnosed with PBC in 1999. My lft's had been abnormal since 1990. I'm

still here to tell the tale, so to speak. I don't expect ever to need a

transplant, but there is life after transplant as well, often long and much

better than before.

I hope you are on an antidepressant, as that can help...many of us are, and for

good reason. We need to get through the stages of grief to get on with our

lives. It's good you are seeing a more knowledgeable doctor. FYI, I take

omeprazole (an rx for the generic of Prilosec) for the heartburn/GERD and it has

worked miracles!

Keep talking to us. Your life is NOT over.

Kay in Austin, 58 yo and not dead yet!

October 12, 2008

Dear Shiela,

Welcome to the group, sorry you find yourself needing our companionship, but you are among friends. As to Spina bifida, yes, it's been in our conversations, I didn't have it but others have. A great tool for this group is to go to the Messages section of the site, up at the top of the page is a box labeled search, type in " Spina Bifida" and up comes about 80 posts from past conversations on this topic, a good jumping off point. Active now in our group is our own Sharon, she will be a valuable resource to you. She had a pretty complicated revision due to a split spinal cord with her congenital scoliosis, and has a host of struggles similar to yours, hopefully she'll chime in. Her revision required a neuro surgeon besides an ortho, was a challenge, but she's doing well, I'll let her give you the details. We do have a few members in Canada, hopefully they too will chime in. You have sure been through a lot, and bravo to you for your coping skills, my goodness you sure have been proactive in trying to relieve symptoms. As you say Flatback is structural, and while my case was no where as difficult as yours, I've found having the structural part fixed as well as possible by revision, I'm doing so much better, and look so much better, and gained back 3 inches in height. The members stories part of the site is good reading, you will find yourself in many of the stories there, go to the files section, click on members stories, I'm from Colorado, also my x-rays are posted from my revision in the photos section.

So, again welcome, us fellow 1959 girls( my 50th will be in June) have to stick together, afterall we will be 50 along with " Barbie", the most unrealistic form of the female body, so here I am turning 50, with my bumps and humps and more pounds that I'd like, but proud despite scoliosis and Flatback I'm still trucking along. Us scoli gals are troopers, just look at you, many would have given up long ago, but you keep on keepin on, BRAVO!

Colorado Springs CO

[ ] Newbie to the group

My name is Sheila Boyd and I live in Ontario, Canada. I was born with congenital scoliosis and spina bifida in 1959 with associated hip dysplasia and r. club foot. I'm wondering if there's anyone else in the group with SB? If so, have you been able to find a surgeon willing to do revision surgery due to the neurological complications with SB?A bit about my history:I was first treated at Sick Kids Hospital in Toronto by Dr Hall in 1965. During that time, I was fitted with a Milwaukee Brace and had surgery to detether my spinal cord in 1969. When Dr Hall moved to Boston, my case was transferred to Dr Gillespie, who performed my Harrington Rod surgery in 1971 when I was 11. I underwent skull tong and femoral pin traction pre-op which straightened my spine around 2.5 inches. Today, I am only 4'7", so I'm always reaching for things and looking up at people, adapting to a world meant for average-sized people. It was only after I got wired on the internet around 11 years ago, that I began to do research into the symptoms I developed gradually in the 20 years post-op and discovered the terms Flatback syndrome and Crankshaft phenomenon and revision surgery. That was my AHA moment! I started experiencing chronic neck pain in the early 90's and it had begun to affect my speaking voice. I was having difficulty getting my words out and was holding my breath instead of breathing naturally. The tension lead to muscle spasms. Working as a receptionist and switchboard operator at the time, the frustration was compounded by people wondering if I was sick and asking "Do you have a cold?" or "Gee, you sound awful" especially considering up to then I had always been told I had a lovely telephone voice. I'm also a singer and actor, so my voice is a my instrument. Not being able to trust that I'm able to perform at an optimum level on any given day leads to major stress and frustration, and lower confidence which, ironically, adds to the neck pain. I had searched out various treatments and therapies to get to the bottom of the vocal problem, with minimal success. An ENT ruled vocal nodes, I was diagnosed with reflux and hiatal hernia and a deviated septum. My dentist diagnosed TMJ. I took yoga and pilates, and studied The Technique. I also sought out psychiatric treatment. 10 years ago, under the urging of my doctor, I started going to an Aquafit class two or three times a week. It was a wonderful way to relieve the stress and very soon I began to get control of my core muscles and relearned how to breathe properly. Massage therapy and reflexology have helped to alleviate the muscle spasms as well. Being diagnosed with Sacroiliac Joint Dysfunction around 8 years ago lead me to start using a cane to assist with mobility. I think I would be in far worse condition today if I didn't use the cane. Two years ago I started chiropractic treatment and to feel instant relief after that first adjustment was amazing! However, because it's a structural problem, the relief is short-lived. Last year my dentist fit me with an appliance to relieve my TMJ disorder. Finally, I was having more good than bad days! I recently had a trip and fall (that usually always results in whiplash) but instead of heading to the chiropractor, I waited for 3 weeks. By that time I was having major occipital headaches. It's almost 2 months later and I'm still dealing with the repercussions. Last week I had a severe muscle spasm involving my neck, shoulders and between my shoulder blades. Which is what I was living with on a daily basis before getting my symptoms (somewhat) under control. I've done pretty well coping with pain over the years, but whenever the stresses in my life build up which leads to severe neck, shoulder and upper back pain - I'm finding it harder to cope. I'm approaching my 40th year post-op (I will be 50 next year) and am now finally considering the option of revision surgery.

October 12, 2008

Hi, Sheila, and welcome to the group.

I have congenital scoliosis too, and something like spina bifida, or

maybe it's a form of it, but no myelomeningocele, although they

suspected one when I was a kid. It actually turned out I had a split

spinal cord. We're nearly the same age too, as I was born in 1958.

I received a Harrington rod fusion in 1971, and had flatback revision

in 2006. My revision surgeon was Dr. Rand in Boston. Before he

could perform the revision I had to have the split cord repaired by his

neurosurgeon colleague, Dr. Woodard. Both operations were

successful and he got me upright, which is quite a blessing. I ended

up having 3 surgery days and 6 weeks total in hospital/rehab, and my

dura required patching twice after the spinal cord operation, so it was

a good thing I had the 2 orthopedic surgeries scheduled. I'm just 2

years out from the ordeal and am doing very well.

There's a woman who used to participate in this group who has

congenital scoliosis and an occult myelomeningocele. We're both in NH

and have met a few times. Dr. Rand attempted a revision on her but it

turned into an exploratory, and he concluded it was too risky in her

case to do a full revision, though I understand he has indicated he

could fuse her to the sacrum if she opts for it.

So I guess the short answer is that maybe you can have a revision

depending on the details of your birth defect. I don't know who in

Canada could help you, but if going to the States is an option you

could certainly consult Dr. Rand. There are several excellent revision

surgeons around the US, but Dr. Rand is the one I know personally and

can recommend for an opinion without hesitation.

Sharon

sheilaboyd2000 wrote:

My name is Sheila Boyd and I live in Ontario, Canada. I was born

with congenital scoliosis and spina bifida in 1959 with associated

hip dysplasia and r. club foot. I'm wondering if there's anyone else

in the group with SB? If so, have you been able to find a surgeon

willing to do revision surgery due to the neurological complications

with SB?

A bit about my history:

I was first treated at Sick Kids Hospital in Toronto by Dr Hall

in 1965. During that time, I was fitted with a Milwaukee Brace and

had surgery to detether my spinal cord in 1969. When Dr Hall moved to

Boston, my case was transferred to Dr Gillespie, who performed

my Harrington Rod surgery in 1971 when I was 11. I underwent skull

tong and femoral pin traction pre-op which straightened my spine

around 2.5 inches. Today, I am only 4'7", so I'm always reaching for

things and looking up at people, adapting to a world meant for

average-sized people.

It was only after I got wired on the internet around 11 years ago,

that I began to do research into the symptoms I developed gradually

in the 20 years post-op and discovered the terms Flatback syndrome

and Crankshaft phenomenon and revision surgery. That was my AHA

moment! I started experiencing chronic neck pain in the early 90's

and it had begun to affect my speaking voice. I was having difficulty

getting my words out and was holding my breath instead of breathing

naturally. The tension lead to muscle spasms.

Working as a receptionist and switchboard operator at the time, the

frustration was compounded by people wondering if I was sick and

asking "Do you have a cold?" or "Gee, you sound awful" especially

considering up to then I had always been told I had a lovely

telephone voice. I'm also a singer and actor, so my voice is a my

instrument. Not being able to trust that I'm able to perform at an

optimum level on any given day leads to major stress and frustration,

and lower confidence which, ironically, adds to the neck pain.

I had searched out various treatments and therapies to get to the

bottom of the vocal problem, with minimal success. An ENT ruled

vocal nodes, I was diagnosed with reflux and hiatal hernia and a

deviated septum. My dentist diagnosed TMJ. I took yoga and pilates,

and studied The Technique.

I also sought out psychiatric treatment. 10 years ago, under the

urging of my doctor, I started going to an Aquafit class two or three

times a week. It was a wonderful way to relieve the stress and very

soon I began to get control of my core muscles and relearned how to

breathe properly. Massage therapy and reflexology have helped to

alleviate the muscle spasms as well.

Being diagnosed with Sacroiliac Joint Dysfunction around 8 years ago

lead me to start using a cane to assist with mobility. I think I

would be in far worse condition today if I didn't use the cane.

Two years ago I started chiropractic treatment and to feel instant

relief after that first adjustment was amazing! However, because it's

a structural problem, the relief is short-lived. Last year my dentist

fit me with an appliance to relieve my TMJ disorder. Finally, I was

having more good than bad days!

I recently had a trip and fall (that usually always results in

whiplash) but instead of heading to the chiropractor, I waited for 3

weeks. By that time I was having major occipital headaches. It's

almost 2 months later and I'm still dealing with the repercussions.

Last week I had a severe muscle spasm involving my neck, shoulders

and between my shoulder blades. Which is what I was living with on a

daily basis before getting my symptoms (somewhat) under control.

I've done pretty well coping with pain over the years, but whenever

the stresses in my life build up which leads to severe neck, shoulder

and upper back pain - I'm finding it harder to cope. I'm approaching

my 40th year post-op (I will be 50 next year) and am now finally

considering the option of revision surgery.

October 13, 2008

Hi Sharon,

I was reading some of the earlier messages and I was amazed at how

similar your history is to mine!

I didn't actually find out that I had spina bifida until I had

surgery on my right foot around 15 years ago. I was in the pre-op

assessment and the nurse was reading the notes from the orthopedic

surgeon who had compiled some of my history from the various

hospitals I'd been in. She started reading " This young woman presents

herself with spina bifida yada yada yada ... " I was surprised and

about to correct her, but I let her continue. When she finished, I

told her that I never knew I had spina bifida. I always told people

I had scoliosis and club foot. Period.

My sister was born with spina bifida with myelomeningocele and

hydrocephalus in 1957 but she died in June 1959. When I was born

later that year, my mother pointed to the dark area on my lower back

and asked if it could be spina bifida. The doctor just brushed it

off and said something like " It looks like it might have started but

it didn't amount to anything ... " I don't think they knew much or

anything about spina bifida occulta back then. Even today, it often

goes undiagnosed until adulthood if there have been no other symptoms.

They were more focused on my dislocated hips and club foot which were

clearly visible defects.

When I told my parents what I'd heard in the pre-op assessment, they

said " No one ever told us. " I suppose by the time I went in for

treatment for scoliosis at age 4, perhaps it was just assumed that my

parents knew. Besides, all the signs were there - the dimple, tuft

of hair, fatty patch, etc. and the myleogram definitively showed the

diastematomyelia (split cord) - which is what you had, too.

I can't locate the details of my fusion and rod placement at the

moment that indicate the exact levels, but I'll try to find them to

post later.

I was also sad to read in one of the messages from another member

that my surgeon, Dr Gillespie, passed away in 2001. I knew he

moved to Buffalo in the mid 80's and I was hoping to get in touch

with him to get his opinion. Does anyone know if Dr Hall is

still living? He was in Boston.

> >

> > My name is Sheila Boyd and I live in Ontario, Canada. I was born

> > with congenital scoliosis and spina bifida in 1959 with associated

> > hip dysplasia and r. club foot. I'm wondering if there's anyone

else

> > in the group with SB? If so, have you been able to find a surgeon

> > willing to do revision surgery due to the neurological

complications

> > with SB?

> >

> > A bit about my history:

> >

> > I was first treated at Sick Kids Hospital in Toronto by Dr

Hall

> > in 1965. During that time, I was fitted with a Milwaukee Brace and

> > had surgery to detether my spinal cord in 1969. When Dr Hall

moved to

> > Boston, my case was transferred to Dr Gillespie, who

performed

> > my Harrington Rod surgery in 1971 when I was 11. I underwent skull

> > tong and femoral pin traction pre-op which straightened my spine

> > around 2.5 inches. Today, I am only 4'7 " , so I'm always reaching

for

> > things and looking up at people, adapting to a world meant for

> > average-sized people.

> >

> > It was only after I got wired on the internet around 11 years ago,

> > that I began to do research into the symptoms I developed

gradually

> > in the 20 years post-op and discovered the terms Flatback syndrome

> > and Crankshaft phenomenon and revision surgery. That was my AHA

> > moment! I started experiencing chronic neck pain in the early 90's

> > and it had begun to affect my speaking voice. I was having

difficulty

> > getting my words out and was holding my breath instead of

breathing

> > naturally. The tension lead to muscle spasms.

> >

> > Working as a receptionist and switchboard operator at the time,

the

> > frustration was compounded by people wondering if I was sick and

> > asking " Do you have a cold? " or " Gee, you sound awful " especially

> > considering up to then I had always been told I had a lovely

> > telephone voice. I'm also a singer and actor, so my voice is a my

> > instrument. Not being able to trust that I'm able to perform at an

> > optimum level on any given day leads to major stress and

frustration,

> > and lower confidence which, ironically, adds to the neck pain.

> >

> > I had searched out various treatments and therapies to get to the

> > bottom of the vocal problem, with minimal success. An ENT ruled

> > vocal nodes, I was diagnosed with reflux and hiatal hernia and a

> > deviated septum. My dentist diagnosed TMJ. I took yoga and

pilates,

> > and studied The Technique.

> >

> > I also sought out psychiatric treatment. 10 years ago, under the

> > urging of my doctor, I started going to an Aquafit class two or

three

> > times a week. It was a wonderful way to relieve the stress and

very

> > soon I began to get control of my core muscles and relearned how

to

> > breathe properly. Massage therapy and reflexology have helped to

> > alleviate the muscle spasms as well.

> >

> > Being diagnosed with Sacroiliac Joint Dysfunction around 8 years

ago

> > lead me to start using a cane to assist with mobility. I think I

> > would be in far worse condition today if I didn't use the cane.

> >

> > Two years ago I started chiropractic treatment and to feel instant

> > relief after that first adjustment was amazing! However, because

it's

> > a structural problem, the relief is short-lived. Last year my

dentist

> > fit me with an appliance to relieve my TMJ disorder. Finally, I

was

> > having more good than bad days!

> >

> > I recently had a trip and fall (that usually always results in

> > whiplash) but instead of heading to the chiropractor, I waited

for 3

> > weeks. By that time I was having major occipital headaches. It's

> > almost 2 months later and I'm still dealing with the

repercussions.

> > Last week I had a severe muscle spasm involving my neck, shoulders

> > and between my shoulder blades. Which is what I was living with

on a

> > daily basis before getting my symptoms (somewhat) under control.

> >

> > I've done pretty well coping with pain over the years, but

whenever

> > the stresses in my life build up which leads to severe neck,

shoulder

> > and upper back pain - I'm finding it harder to cope. I'm

approaching

> > my 40th year post-op (I will be 50 next year) and am now finally

> > considering the option of revision surgery.

> >

>

October 14, 2008

Hi Sheila,

Welcome to the group. Where in Ontario are you? Have you already got

a surgeon in mind or are you just starting to look in that direction.

I know we have a number of members up in your area of Canada and if

you use our search feature, just type in " ontario " and you will be

able to look for a number of threads that might lead you to good

information. I know the medical system is a bit different up there so

I hope that it will not be too inconvenient to get in to see someone

with the kind of experience that you need.

I don't know about DrHall today, but he trained many of the scoli

doctors in Boston " in the day " as I understand it. He is listed

as " Emeritus " for the spine group at Childrens today... so I assume

he is alive, but perhaps not practicing anymore:

http://www.spineuniverse.com/mdpage.php?doctorID=2143

Its great to hear that the aquatic work gave you some relief and help

strengthened you in a positive way. I love the water.

Whatever you decide to do, getting as much information as you can

about who is an option to treat you in the future will be helpful. I

know the Canadian system may not permit you 2nd or 3rd opinions...but

if you have all your imaging already done it may not actually be cost

prohibitive to travel to the US, and even to Boston or NYC, to have

another set of eyes take a look at you.

I hope the other gals from ON chime in too!

Take Care, Cam

October 24, 2008

Hi Sheila

I've just been catching up on recent messages, and see you are a fellow Canadian. I'm from Kingston. I also had original Harrington surgery with Dr. Gillespie in Toronto at age 15. I'm now 52.

I see Cam has mentioned the names of the doctors I know of in Ontario. I can tell you a little about my consults with Dr. at Toronto Western and Dr Ford at Sunnybrook.

Dr. suggested extending my fusion from L3 to L4, with osteotomies to "decrease my deformity". He felt he could reduce my 60 degree lumbar curve by at least 50%.

When I saw Dr. Ford, he stated I wasn't bad enough, and I should take a wait and see approach. He also said that lumbar curve couldn't be straightened, as it would be too rigid.

So now I don't know what to do. I am still working as a nurse and my pain is not acute at this time. However the chronic discomfort is making it harder and harder to keep working. I am hoping to hang in there for a few more years.

Anyway, if you want my general impression (for what it's worth) of these two docs, I would say Dr Ford, who is the older of the two, would probably be more conservative in his approach. Dr didn't hesitate to offer the surgical option. I think they both have good reputations in this field. You should probably try to see both of them, if you can.

From: sheilaboyd2000 <sheilaboyd@...>Subject: [ ] Newbie to the group Received: Saturday, October 11, 2008, 10:33 PM

My name is Sheila Boyd and I live in Ontario, Canada. I was born with congenital scoliosis and spina bifida in 1959 with associated hip dysplasia and r. club foot. I'm wondering if there's anyone else in the group with SB? If so, have you been able to find a surgeon willing to do revision surgery due to the neurological complications with SB?A bit about my history:I was first treated at Sick Kids Hospital in Toronto by Dr Hall in 1965. During that time, I was fitted with a Milwaukee Brace and had surgery to detether my spinal cord in 1969. When Dr Hall moved to Boston, my case was transferred to Dr Gillespie, who performed my Harrington Rod surgery in 1971 when I was 11. I underwent skull tong and femoral pin traction pre-op which straightened my spine around 2.5 inches. Today, I am only 4'7", so I'm always reaching for things and looking up at people, adapting to a world

meant for average-sized people. It was only after I got wired on the internet around 11 years ago, that I began to do research into the symptoms I developed gradually in the 20 years post-op and discovered the terms Flatback syndrome and Crankshaft phenomenon and revision surgery. That was my AHA moment! I started experiencing chronic neck pain in the early 90's and it had begun to affect my speaking voice. I was having difficulty getting my words out and was holding my breath instead of breathing naturally. The tension lead to muscle spasms. Working as a receptionist and switchboard operator at the time, the frustration was compounded by people wondering if I was sick and asking "Do you have a cold?" or "Gee, you sound awful" especially considering up to then I had always been told I had a lovely telephone voice. I'm also a singer and actor, so my voice is a my instrument. Not being

able to trust that I'm able to perform at an optimum level on any given day leads to major stress and frustration, and lower confidence which, ironically, adds to the neck pain. I had searched out various treatments and therapies to get to the bottom of the vocal problem, with minimal success. An ENT ruled vocal nodes, I was diagnosed with reflux and hiatal hernia and a deviated septum. My dentist diagnosed TMJ. I took yoga and pilates, and studied The Technique. I also sought out psychiatric treatment. 10 years ago, under the urging of my doctor, I started going to an Aquafit class two or three times a week. It was a wonderful way to relieve the stress and very soon I began to get control of my core muscles and relearned how to breathe properly. Massage therapy and reflexology have helped to alleviate the muscle spasms as well. Being diagnosed with Sacroiliac Joint

Dysfunction around 8 years ago lead me to start using a cane to assist with mobility. I think I would be in far worse condition today if I didn't use the cane. Two years ago I started chiropractic treatment and to feel instant relief after that first adjustment was amazing! However, because it's a structural problem, the relief is short-lived. Last year my dentist fit me with an appliance to relieve my TMJ disorder. Finally, I was having more good than bad days! I recently had a trip and fall (that usually always results in whiplash) but instead of heading to the chiropractor, I waited for 3 weeks. By that time I was having major occipital headaches. It's almost 2 months later and I'm still dealing with the repercussions. Last week I had a severe muscle spasm involving my neck, shoulders and between my shoulder blades. Which is what I was living with on a daily basis before getting my

symptoms (somewhat) under control. I've done pretty well coping with pain over the years, but whenever the stresses in my life build up which leads to severe neck, shoulder and upper back pain - I'm finding it harder to cope. I'm approaching my 40th year post-op (I will be 50 next year) and am now finally considering the option of revision surgery.

Now with a new friend-happy design! Try the new Canada Messenger

October 24, 2008

>

> Hello , everyone. I'm and I'm new to Natural Perfumery. I just

> started reading and learning about harnessing the natural fragrances

of

> nature. I have not heard of any shops here in GA that does this. I

> believe I'm a chemist at heart. I would like to know what tools or

> instruments some of you use to obtain your scents and oils. I want

to

> start out with floral hydrosols. I have the rose petals and some of

> those websites on the net are confusing. I hear you can use a copper

> still for this, but is there a homemade way of obtaining hydrosols?

>

hi ! and welcome to this group....if you can reconfigure a

pressure cooker, then you can distill. (i have been making them at

home for 20 years). you may want to invest in a condensing tube with a

water jacket, which you can get from Carolina Biological Supply just

up the hill in NC. you will need to fit a copper elbow coming up from

the steam hole of the cooker (mine is 7 inches up and then about a

foot coming down at a bit more than 90 degrees) after your first

batch, the sky is the limit! let me know if i can answer any more

questions.

dabney

artisan distilled hydrosols

http://www.dabney-rose.com

scent@...

April 4, 2010

OMG!! I SOOOOOOOOOOOO wish i was 25.. DOH.. im 35.............

>

> Hi there, my name is and I am 25 years old. I am on R2 D5 P2 Last time

I did homeopathic drops because i was waiting on a wait list to get into a

clinic here, I did not like the drops as much as im liking the Injections im

finding things are easier this time, im not 100% sold on those homeopathic drops

i was getting. I took 2 pregnancy tests. put the drops directly on one, and put

2 drops of my hcg right out of my needle and put it on the other, guess which

one was positive? LOL it sure made for a great late April fools joke for my

teenagers, Concidering im menopausal because of cancer

> my insurance covered a major chunk of the HCG itself so in total including

visits to the clinic im paying $70 as opposed to the $250 I was paying for the

drops that made me feel like crap

>

> I do have a few Questions though

> Skin care, am I able to use my regular moisturizer? Im using Arbonne RE9 and

FC5

> and body creame I need some lotion sometimes i wash my hands alot Im used to

using bath and body works stuff and I know i cant use that it has almost oil and

jojoba oil in it

>

> I did order the Arbonne baby line and i should have it in a few days

> Mt clinic told me I could use any baby lotion and coconut oil, but the coconut

oil seems wrong to me

>

> and anyone know of any great places for P2 recipies? My clinic told me im

allowed to mix my vegetables and the first time i wasnt , and this makes it a

little more interesting when im having a salad. Im always looking for great

things to make it a bit more interesting

> expecially a recipie making a desert with apples.

>

> ~~*~~ Fuentes~~*~~

>

> Car Bonus Achiever

> 2010 Executive Director Council

> 403 331 3662

> www.sandraspassion.com

>

> Living the Passion Angel Mantra

> ~*~*~~*~*When work, commitment and pleasure all become one, and you reach that

deep well where Passion lives....

> NOTHING is Impossible!~*~*~*~~*~*~

>

April 4, 2010

Hey a good apple recipe is to take a apple cut in half sprinkle with cinnamon and stevia or splenda and bake it in oven! Mmm it's like a hot apple pie dessert!!! It's my favorite snack haha! Sent from my iPhoneOn Apr 4, 2010, at 1:04 PM, "idohair02" <idohair02@...> wrote:

OMG!! I SOOOOOOOOOOOO wish i was 25.. DOH.. im 35.............

>

> Hi there, my name is and I am 25 years old. I am on R2 D5 P2 Last time I did homeopathic drops because i was waiting on a wait list to get into a clinic here, I did not like the drops as much as im liking the Injections im finding things are easier this time, im not 100% sold on those homeopathic drops i was getting. I took 2 pregnancy tests. put the drops directly on one, and put 2 drops of my hcg right out of my needle and put it on the other, guess which one was positive? LOL it sure made for a great late April fools joke for my teenagers, Concidering im menopausal because of cancer

> my insurance covered a major chunk of the HCG itself so in total including visits to the clinic im paying $70 as opposed to the $250 I was paying for the drops that made me feel like crap

>

> I do have a few Questions though

> Skin care, am I able to use my regular moisturizer? Im using Arbonne RE9 and FC5

> and body creame I need some lotion sometimes i wash my hands alot Im used to using bath and body works stuff and I know i cant use that it has almost oil and jojoba oil in it

>

> I did order the Arbonne baby line and i should have it in a few days

> Mt clinic told me I could use any baby lotion and coconut oil, but the coconut oil seems wrong to me

>

> and anyone know of any great places for P2 recipies? My clinic told me im allowed to mix my vegetables and the first time i wasnt , and this makes it a little more interesting when im having a salad. Im always looking for great things to make it a bit more interesting

> expecially a recipie making a desert with apples.

>

> ~~*~~ Fuentes~~*~~

>

> Car Bonus Achiever

> 2010 Executive Director Council

> 403 331 3662

> www.sandraspassion.com

>

> Living the Passion Angel Mantra

> ~*~*~~*~*When work, commitment and pleasure all become one, and you reach that deep well where Passion lives....

> NOTHING is Impossible!~*~*~*~~*~*~

>

November 8, 2010

Hello Everyone........

Very happy to have found this group. Somewhere to hopefully get some

advice, because I'm feeling lost. A year ago I went to my doctor and told him

my problems....Low energy, low libido, moodiness. The doctor ordered blood work

to confirm what he expected and sure enough my testosterone levels were in the

very low end of normal....low 200's. So he prescribed Testim gel. Tried that

for a month, one tube a day, and there was very little difference in my levels,

so he upped it to a tube and a half a day. Tried that for awhile, another blood

test and the results were the same. My levels were still in the low two

hundreds. $225 for a 30 tube box of Testim, and at a tube and a half a day, I

was going through a box every twenty days...

So we decided to try the Cyp shots. I tried that for four weeks, at $100 per

week to the doctor for the shot. I would feel fine at the beginning of the

week, but by the end of the week, I was feeling like I was going to crawl out of

my skin, and I was flying off the handle at the drop of a hat. Doctor told me I

should be having these side effects right after getting the shot, not the other

way around.

I got off of everything for a couple of months, just frustrated with it all.

That didn't help. So after talking to my doctor again, he sent me to the

urologist. More bloodwork, testosterone levels STILL in the low two hundreds.

So the urologist prescribed the Androgel pump. Used it for a month ($290), then

another blood test, and my levels have fallen to 190! So, this Friday, I am

going back to the urologist, and he is going to insert the testosterone pellets

under my skin in my hip. I have been told by, of all people, my boss, that this

has worked for him...

I just want my energy back. I have just turned 50 and I am not ready for all of

this, and I'm at my wits end.........

I am beyond frustrated and would appreciate some advice.

Thanks!

November 9, 2010

Hi Spence D and Welcome,

What happened to you is the gels were not getting through your skin this is why

I tell men going on them to test in 2 weeks after starting or you can end up

lower then you started.

Shot work it done right some men like my self a shot 100 mgs/week dose not keep

us leveled so we do them our self's for about the cost of one of your shots.

And it lasts for 20 shots. We do them 2x's a week I do mine every 3 days. And

I add in HCG doing a 250 IU's shot the day before my Test C shot this keeps my

testis working and helps keep my levels up.

One thing you need to know about pellets is if done right they should last 3 to

4 months. Problem is finding a Dr. that knows how to do this most will not give

us enough pellets to last this long. One needs about 1500 mgs of pellets to do

the job right.

Here in MI. there are no good Dr.'s doing pellets when I tried them they lasted

me less then 30 days for a cost of over $1400. then in 30 days after labs it

cost me $600 more. The dam Dr. was not giving me enough pellets at the time

they came in 75 mgs pellets today you can get 200 mg. pellets.

If your Dr. will not give you enough don't waste your time and money. I can buy

a Vial 10 mls. of 200mgs/ml of Test C. For about $120 at Costco. HCG for about

$50 that lasts a month.

Go to www.allthingsmale.com and read the FAQ's there and his paper TRT: A Recipe

for Success and his HCG update.

Us men on TRT need to keep track of Estradiol levels taking Testosterone meds

them levels can go to high and kill your sex life undo any good the Testosterone

meds are going. So test this you need to be at about 20 pg/ml anything over 30

needs to be treated we us Arimidex to keep this down 1/4 of a pill every 3 days

works for most men.

In the past 3 months we have two men on Pellets getting over 1500 mgs and doing

great on them.

If I could find a Dr. that was not trying to rip me off for my money by trying

to use less pellets so would be seeing him more I would jump on them.

Also most Health Care Plains will not pay for this.

In this link Dr.'s working under them or trained by them are good.

http://www.sottopelletherapy.com/

Co-Moderator

Phil

> From: Spence D <spencesdd@...>

> Subject: Newbie to the group

>

> Date: Monday, November 8, 2010, 11:42 PM

> Hello Everyone........

> Very happy to have found this group. Somewhere

> to hopefully get some advice, because I'm feeling

> lost. A year ago I went to my doctor and told him my

> problems....Low energy, low libido, moodiness. The

> doctor ordered blood work to confirm what he expected and

> sure enough my testosterone levels were in the very low end

> of normal....low 200's. So he prescribed Testim

> gel. Tried that for a month, one tube a day, and there

> was very little difference in my levels, so he upped it to a

> tube and a half a day. Tried that for awhile, another

> blood test and the results were the same. My levels

> were still in the low two hundreds. $225 for a 30 tube

> box of Testim, and at a tube and a half a day, I was going

> through a box every twenty days...

>

> So we decided to try the Cyp shots. I tried that for

> four weeks, at $100 per week to the doctor for the

> shot. I would feel fine at the beginning of the week,

> but by the end of the week, I was feeling like I was going

> to crawl out of my skin, and I was flying off the handle at

> the drop of a hat. Doctor told me I should be having

> these side effects right after getting the shot, not the

> other way around.

>

> I got off of everything for a couple of months, just

> frustrated with it all. That didn't help. So

> after talking to my doctor again, he sent me to the

> urologist. More bloodwork, testosterone levels STILL

> in the low two hundreds. So the urologist prescribed

> the Androgel pump. Used it for a month ($290), then

> another blood test, and my levels have fallen to 190!

> So, this Friday, I am going back to the urologist, and he is

> going to insert the testosterone pellets under my skin in my

> hip. I have been told by, of all people, my boss, that

> this has worked for him...

>

> I just want my energy back. I have just turned 50 and

> I am not ready for all of this, and I'm at my wits

> end.........

>

> I am beyond frustrated and would appreciate some advice.

>

> Thanks!

>

> ------------------------------------

>

November 9, 2010

You might also want to get thyroid tested, not just TSH, but Free T3, Free T4,

ferritin, for starters. The fact that the gels didn't work screams hypothyroid.

Barb

>

> Hello Everyone........

> Very happy to have found this group. Somewhere to hopefully get some