Another new member

Posted December 31, 2001 · December 31, 2001

Welcome to the Group ,

I have always believed that stress was the primary factor in bringing about or at least hastening my achalasia. I was 14 when I first started having problems and I believe it was stress related to my family situation.

Fitzgerald

68 Esophagectomy in 1993

Another New Member

Hello all, I too have been viewing this site for awhile and I have been meaning tojoin. This is an awesome site that I wish I could have stumbled upon longago. It is comforting to know there are other people who have similarproblems. Although I wouldn't wish this on my worst enemy!!! I can't really bring anything new to this group that hasn't already beendiscussed: white foam, gurgling and burping constantly, sleepless nights andwaking up choking and gagging, drink coke with my meals to help buildpressure to overcome the LES.... All ditto's from me. I am from the great state of Michigan, at least great in June, July, andAugust!! I ended up getting sent to and diagnosed with achalasia in Augustof 1996 at the Cleveland Clinic. I struggled for two years prior beforefinally getting relief. I had the dilation then and it was tolerable for me until about a yearago. I then started having difficulty sleeping again and food was stickinglonger. I finally made another appointment at Cleveland Clinic and had thelaproscopic Heller myotomy in late August of this year. For anyone thinking about this surgery, from my perspective, it was apiece of cake. The monometry test in my opinion was worse than the surgery,and I am a big wimp. I would say that I am 90 to 95% normal. It took acouple weeks for things to settle down, but one Prilosec a day is all I dealwith now. Very infrequently do I struggle with food now (I hope it lasts).Great doctor's there named Dr. Richter and excellent surgeon named DoctorRice for anyone in that area who may be in need. I guess the only thing I believe I can add to the conversation is that Ifeel very confident as to what the cause of my achalasia was. I have seenpostings from some people about stress and anxiety. I went through a verystressful time in 1994. I couldn't barely sleep or eat. I went thru thedays drinking nothing but coffee to keep me going. When I would fallasleep, I would wake up with the most "on fire" heartburn I could haveimagined. I was never a heartburn sufferer prior to this time. To make along story short, it was during this time I first experienced this disorderor disease.My doctors feel it is possibly an auto immune disease, and the stress Iexperienced probably just hastened the onset of it. I not so sure, but I'veseen other postings to this subject as well. Anyway, thanks to all for your postings and sharing of info. May you allhave a Happy New Year!!!

Posted January 2, 2002 · January 2, 2002

Thanks to all of you for your welcoming me to this group.

It's too bad we can't turn the clock back to the stressed

periods.... I don't know about any of you, but the situation was

never in my control to begin with. I just ended up damaging myself

beyond full repair. Hindsight is 20/20...

> Welcome to the Group ,

> I have always believed that stress was the primary factor in

bringing about or at least hastening my achalasia. I was 14 when I

first started having problems and I believe it was stress related to

my family situation.

> Fitzgerald

> 68 Esophagectomy in 1993

> Another New Member

>

> Hello all,

>

> I too have been viewing this site for awhile and I have been

meaning to

> join. This is an awesome site that I wish I could have stumbled

upon long

> ago. It is comforting to know there are other people who have

similar

> problems. Although I wouldn't wish this on my worst enemy!!!

>

> I can't really bring anything new to this group that hasn't

already been

> discussed: white foam, gurgling and burping constantly, sleepless

nights and

> waking up choking and gagging, drink coke with my meals to help

build

> pressure to overcome the LES.... All ditto's from me.

>

> I am from the great state of Michigan, at least great in June,

July, and

> August!! I ended up getting sent to and diagnosed with achalasia

in August

> of 1996 at the Cleveland Clinic. I struggled for two years prior

before

> finally getting relief.

>

> I had the dilation then and it was tolerable for me until about

a year

> ago. I then started having difficulty sleeping again and food

was sticking

> longer. I finally made another appointment at Cleveland Clinic

and had the

> laproscopic Heller myotomy in late August of this year.

>

> For anyone thinking about this surgery, from my perspective, it

was a

> piece of cake. The monometry test in my opinion was worse than

the surgery,

> and I am a big wimp. I would say that I am 90 to 95% normal. It

took a

> couple weeks for things to settle down, but one Prilosec a day is

all I deal

> with now. Very infrequently do I struggle with food now (I hope

it lasts).

> Great doctor's there named Dr. Richter and excellent surgeon

named Doctor

> Rice for anyone in that area who may be in need.

>

> I guess the only thing I believe I can add to the conversation

is that I

> feel very confident as to what the cause of my achalasia was. I

have seen

> postings from some people about stress and anxiety. I went

through a very

> stressful time in 1994. I couldn't barely sleep or eat. I went

thru the

> days drinking nothing but coffee to keep me going. When I would

fall

> asleep, I would wake up with the most " on fire " heartburn I could

have

> imagined. I was never a heartburn sufferer prior to this time.

To make a

> long story short, it was during this time I first experienced

this disorder

> or disease.

>

> My doctors feel it is possibly an auto immune disease, and the

stress I

> experienced probably just hastened the onset of it. I not so

sure, but I've

> seen other postings to this subject as well.

>

> Anyway, thanks to all for your postings and sharing of info.

May you all

> have a Happy New Year!!!

>

Posted January 2, 2002 · January 2, 2002

, we can't turn the clock back, but we can learn from mistakes and

go forward....I wish I could too, but this is the next best thing...My

new ambition is to be " unflappable " .

Posted August 12, 2002 · August 12, 2002

Anne,

Welcome to the group.

If you search back through the postings you will see various members experiences of BotTox, Dilatations and Surgery. What is good for one is a disaster for another as you will see if you read the postings to date?

Welcome anyway and I hope you can make a decision soon as to the right route for treatment for you.

Chris

Plymouth UK

Posted June 17, 2003 · June 17, 2003

> a, You are a trooper ! I don't live in California... I

live in

> Florida, but just wanted you to know that we are glad you have

joined us. I

> think we could learn from your tenacity! If you consulted with Dr.

Serena Hu then

> you consulted with one of the best from what I hear. Stay with us

and we

> will encourage you and may have information to help you. You are

sure an

> encouragement to me; especially having gone through all of that

and still able to

> walk a mile at a time! And no narcotics ! What is your secret ?

Looking

> forward to hearing from you more. Best to you. Barbara

Hello Barbara:

This site is new to me and I'm not sure where to type the

message so I hope you get my message.

Thanks for your warm reply. To answer your question, I don't

know why I didn't need narcotic pain meds after the revision

surgery. They were surprised in the hospital as well and the nurses

were insistent that I take something. Fortunately, my surgeon was in

the room when this was happening and he said they should take me at

my word. However, while I was recuperating in the hospital, I seemed

to have dislocated both of my shoulders (on separate days) and they

hurt like hell. I asked for narcotic pain meds then and they didn't

even touch the pain.

I TRY to walk a mile a day; some days, it's just 1/2 mile. My

stamina isn't what it used to be. Duh!

My biggest concern is how my body is reconfigured now. My upper

torso leans back and I lead with my abdomen. The surgeon says I need

to lean forward a little and bend at the hips. So I'm trying to

practice this, but it's difficult and I'm discouraged.

a

Posted June 17, 2003 · June 17, 2003

> Hello a,

>

> Welcome to the group! Rest assured you have found a group of very

> caring helpful individuals here!

>

> I'm curious what kind of hardware your doctor used, two years ago

> right? I guess I thought flatback (harms) was only from us fused

> with harrington rods or CD rods in the 70's and 80's.

>

> You held out so long to make the right choice and I admire your

> tenacity! I'm sorry you have not had the outcome you anticipated. I

> wish you the best sorting out your situation!

>

> Feel free to share more of your story, anytime day or night!

That's

> the side benefit of communicating by the internet.....

>

> M.

Hello :

I'm sorry but I don't know the type of hardware my surgeon

used. I'll try to dig up the copy of his operation report and see if

it's in there.

As far as revision surgery goes, it most frequently is done on

those patients who have the Harrington Rod, but it can be caused by

scoliosis surgery. No surgeon is going to admit to doing anything

wrong,(liability issues, egos, etc.)but sometimes it can't be

prevented. My initial surgery was complex: the extent of the

rotation, the large curvature, soft bone (osteoporosis), much blood

loss, the length of the surgery, etc. So who knows? I did not spend

much psychic energy on who did what wrong. I just wanted it fixed

and the sooner the better.

a

Posted June 17, 2003 · June 17, 2003

Welcome, a.

I certainly would find that discouraging. After having flatback I'd think

you'd have had enough of leaning forward and bending at the hips! That's

something I still can't NOT do.

I hope this difficulty works itself out, as you've surely endured a lot.

Wishing you all the best,

Sharon in southern New Hampshire :^)

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 fusion T5 to L4 w/ single Harrington rod

Flatback, congenital thoracolumbar kyphosis, L5-S1 degeneration, etc.

At 03:55 AM 6/18/03 -0000, you wrote:

My biggest concern is how my body is reconfigured now. My upper

torso leans back and I lead with my abdomen. The surgeon says I need

to lean forward a little and bend at the hips. So I'm trying to

practice this, but it's difficult and I'm discouraged.

a

Posted June 18, 2003 · June 18, 2003

Hi a, and welcome to the the group. You said.....

> " My biggest concern is how my body is reconfigured now. My upper

>torso leans back and I lead with my abdomen. The surgeon says I need

>to lean forward a little and bend at the hips. So I'm trying to

>practice this, but it's difficult and I'm discouraged. "

a

I am a bit concerned about this because I will be getting my

revision surgery within

a year or so. I am very concerned about overcompensation for the

flatback syndrome

and i am wondering how many others have had this same experiance? Also

what can be

done to avoid this from happening. The Doc I have decided on doesn't seem

concerned

about this. But I am. ! I am wondering how many others who have had

revision surgery

are experiencing this same problem? What do you ask the Doc to do or not

to do to avoid

this? All comments are welcome.. Thanks...Carol

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

Posted June 18, 2003 · June 18, 2003

---Carol -

At least you now know one potential problem to revision surgery.

Read Message 1802 to get more complications I am experiencing.

By the way, (bear with this computer dummy) how do I get a

different e-mail address from the ID? (The way you have it)

a

In , Irish539@j... wrote:

> Hi a, and welcome to the the group. You said.....

>

> > " My biggest concern is how my body is reconfigured now. My

upper

> >torso leans back and I lead with my abdomen. The surgeon says I

need

> >to lean forward a little and bend at the hips. So I'm trying to

> >practice this, but it's difficult and I'm discouraged. "

> a

>

> I am a bit concerned about this because I will be getting my

> revision surgery within

> a year or so. I am very concerned about overcompensation for the

> flatback syndrome

> and i am wondering how many others have had this same experiance?

Also

> what can be

> done to avoid this from happening. The Doc I have decided on

doesn't seem

> concerned

> about this. But I am. ! I am wondering how many others who have had

> revision surgery

> are experiencing this same problem? What do you ask the Doc to do

or not

> to do to avoid

> this? All comments are welcome.. Thanks...Carol

>

> ________________________________________________________________

> The best thing to hit the internet in years - Juno SpeedBand!

> Surf the web up to FIVE TIMES FASTER!

> Only $14.95/ month - visit www.juno.com to sign up today!

Posted August 19, 2003 · August 19, 2003

You had no problems with water getting in your ear? Our doctor has

told us that our daughter can't get any water in her ear. We let her

swim, but only with her head kept above water and ear plugs in. She

doesn't really swim as much as walk around, but so far it has been

enough to keep her happy even though her brothers are jumping in and

swimming under water.

Amy

> Hi All,

>

> I've had 2 c-toma's - one for each ear. First was about 24 years

ago

> in the left ear. Had a radical mastoidectomy among the 4 or so

> surgeries to fix that side up. Now at 36 I've had the first

> operation to remove a new c-toma in the right ear.

>

> The earlier surgeries were done by House Institute legend Dr.

Sheehe

> (Not sure how to spell it - but every ENT I see knows him).

Hearing

> is mostly gone in that side, and just recently got a hearing aide

> since my new c-toma has wiped out the hearing in what was my " good

> ear " I've had no further problems on the left side, other than the

> hearing not being very good. I see lots of folks questioning

> swimming after the mastoidectomy, but I swam and played water polo

in

> High School and college after my first c-toma with no problems. Go

> to an audiologist and get a good ear plug. It's worth it.

>

> Last week I had the mastoidectomy to remove the c-toma in the right

> ear. I've been midly dizzy since - but that seems to be getting

> better. Pain isn't very bad at all. The operation took 4 hours

and

> reconstruction wasn't possible at the time so I'll have to have

> another in a few months. Dr. said that the bone protecting the

> facial nerve was still intact, but the taste nerve was exposed.

> Still have taste at this point though (he didn't have to cut it).

>

> The prosthesis (sp?) in my right ear to replace the middle ear

bones

> has long since fallen out. Dr. says the new ones are much better,

so

> hopefully when they do the reconstruction on the right ear it'll

last

> longer.

>

> Anyone have any reconstruction success stories? Hopefully I'll be

> able to post one in a few months :-).

>

> Hearing aide is a real drag, but it beats the isolation of not

> hearing at all.

>

> That's my history. C-toma's suck, but there are far worse things.

> Find a good ENT. I would highly recommend Dr.s that trained at the

> House Institute in L.A. for folks in the states. I've been told

> there is another equally regarded ear institute in Atlanta as well

> (my current ENT trained there) but the name escapes me. (And no, my

> current ENT wasn't the one who told me it was equally regarded :-

) ).

>

> I'm sorry to see others with this problem, but it is good to hear

the

> stories and share.

>

> Bob

Posted August 19, 2003 · August 19, 2003

No, I never had any problems with it. To this day I'm not as careful

as I should be - I don't usually wear anything in it when I shower,

but I do use my specially molded ear plug when I swim now. I didn't

always when I was younger. (This is not to say your daughter

shouldn't wear a plug all the time!) I was in the pool 2x a day for

quite a few years, surfed, water skied, never had any issues. Within

the past 5 or so years I get pretty dizzy if I try to swim without

the plug. I guess that's a blessing causes it forces me to use it,

which I should anyhow. Every doctor I see reminds me not to get

water in there - but it has never been an issue for me <knocking on

my wood desk>. :-)

Definitely have her take it slow, but as long as she wears the plug,

I wouldn't let it limit her activities.

Bob

> > Hi All,

> >

> > I've had 2 c-toma's - one for each ear. First was about 24 years

> ago

> > in the left ear. Had a radical mastoidectomy among the 4 or so

> > surgeries to fix that side up. Now at 36 I've had the first

> > operation to remove a new c-toma in the right ear.

> >

> > The earlier surgeries were done by House Institute legend Dr.

> Sheehe

> > (Not sure how to spell it - but every ENT I see knows him).

> Hearing

> > is mostly gone in that side, and just recently got a hearing aide

> > since my new c-toma has wiped out the hearing in what was

my " good

> > ear " I've had no further problems on the left side, other than

the

> > hearing not being very good. I see lots of folks questioning

> > swimming after the mastoidectomy, but I swam and played water

polo

> in

> > High School and college after my first c-toma with no problems.

Go

> > to an audiologist and get a good ear plug. It's worth it.

> >

> > Last week I had the mastoidectomy to remove the c-toma in the

right

> > ear. I've been midly dizzy since - but that seems to be getting

> > better. Pain isn't very bad at all. The operation took 4 hours

> and

> > reconstruction wasn't possible at the time so I'll have to have

> > another in a few months. Dr. said that the bone protecting the

> > facial nerve was still intact, but the taste nerve was exposed.

> > Still have taste at this point though (he didn't have to cut it).

> >

> > The prosthesis (sp?) in my right ear to replace the middle ear

> bones

> > has long since fallen out. Dr. says the new ones are much

better,

> so

> > hopefully when they do the reconstruction on the right ear it'll

> last

> > longer.

> >

> > Anyone have any reconstruction success stories? Hopefully I'll

be

> > able to post one in a few months :-).

> >

> > Hearing aide is a real drag, but it beats the isolation of not

> > hearing at all.

> >

> > That's my history. C-toma's suck, but there are far worse

things.

> > Find a good ENT. I would highly recommend Dr.s that trained at

the

> > House Institute in L.A. for folks in the states. I've been told

> > there is another equally regarded ear institute in Atlanta as

well

> > (my current ENT trained there) but the name escapes me. (And no,

my

> > current ENT wasn't the one who told me it was equally regarded :-

> ) ).

> >

> > I'm sorry to see others with this problem, but it is good to hear

> the

> > stories and share.

> >

> > Bob

Posted August 20, 2003 · August 20, 2003

I'm just so afraid that the cholesteatoma will come back if I let her

do to much that I think sometimes I don't let her do things that

would probably be okay. I think that maybe because I have been

through major surgery myself (I have congenital hip dysplasia) that I

don't want to put her through any more than is necessary. She has

never even had to have her ear suctioned out like most people on this

site talk about. We are very careful and try to keep it very clean so

she doesn't have to go through that.

Amy

> > > Hi All,

> > >

> > > I've had 2 c-toma's - one for each ear. First was about 24

years

> > ago

> > > in the left ear. Had a radical mastoidectomy among the 4 or so

> > > surgeries to fix that side up. Now at 36 I've had the first

> > > operation to remove a new c-toma in the right ear.

> > >

> > > The earlier surgeries were done by House Institute legend Dr.

> > Sheehe

> > > (Not sure how to spell it - but every ENT I see knows him).

> > Hearing

> > > is mostly gone in that side, and just recently got a hearing

aide

> > > since my new c-toma has wiped out the hearing in what was

> my " good

> > > ear " I've had no further problems on the left side, other than

> the

> > > hearing not being very good. I see lots of folks questioning

> > > swimming after the mastoidectomy, but I swam and played water

> polo

> > in

> > > High School and college after my first c-toma with no

problems.

> Go

> > > to an audiologist and get a good ear plug. It's worth it.

> > >

> > > Last week I had the mastoidectomy to remove the c-toma in the

> right

> > > ear. I've been midly dizzy since - but that seems to be

getting

> > > better. Pain isn't very bad at all. The operation took 4

hours

> > and

> > > reconstruction wasn't possible at the time so I'll have to have

> > > another in a few months. Dr. said that the bone protecting the

> > > facial nerve was still intact, but the taste nerve was

exposed.

> > > Still have taste at this point though (he didn't have to cut

it).

> > >

> > > The prosthesis (sp?) in my right ear to replace the middle ear

> > bones

> > > has long since fallen out. Dr. says the new ones are much

> better,

> > so

> > > hopefully when they do the reconstruction on the right ear

it'll

> > last

> > > longer.

> > >

> > > Anyone have any reconstruction success stories? Hopefully I'll

> be

> > > able to post one in a few months :-).

> > >

> > > Hearing aide is a real drag, but it beats the isolation of not

> > > hearing at all.

> > >

> > > That's my history. C-toma's suck, but there are far worse

> things.

> > > Find a good ENT. I would highly recommend Dr.s that trained at

> the

> > > House Institute in L.A. for folks in the states. I've been

told

> > > there is another equally regarded ear institute in Atlanta as

> well

> > > (my current ENT trained there) but the name escapes me. (And

no,

> my

> > > current ENT wasn't the one who told me it was equally

regarded :-

> > ) ).

> > >

> > > I'm sorry to see others with this problem, but it is good to

hear

> > the

> > > stories and share.

> > >

> > > Bob

Posted October 23, 2003 · October 23, 2003

Wow nice to meet a fellow needle phobic. I am traumatized be my

birth experiences because of needles. I received no support in

planning the natural births I wanted so I ended up with the normal

hospital experience.

I had a similar experience when I was a child that ended in me not

getting a booster.

My final decision not to vax my baby at all came when somebody was

telling me about how sore their baby was after 4 shots in one visit.

Yes those telling me she needs it say I should just arrange for1 or

2 at a time, but to me that seems no less cruel.

> hi all

>

> I am Alison SAHM to Max 6yo and Luca 2 1/2. We live in South West

> London, England.

>

> my interest in vaccinations has grown and grown over the years.

It

> basically stems from a massive phobia of needles which appears to

> date back to when I was given my booster at 5yo and the very kind

> nurse tried explaining what was happening to me. This ended up

with

> her chasing me round the room and me being petrified.

>

> So ever since then I have got worse and worse about the subject

(so

> joining this group was not easy as it causes me physical and

> emotional pain to discuss these things). It got to the point

where I

> was sent for psychiatric treatment during my first pregnancy to

> undergo cognitive behavioural therapy - bascially trying to make

me

> face my fear. Well all that did was to convince me to stay away

from

> sharp pointy things. The psychiatrist however did come up with

the

> perfect phrase for me and that was " avoidance " . I will do

anything I

> can to avoid needles. (I was " forced " to have a blood test to

> determine blood group - but they refused to do it at my doctors

> surgery as I made so much fuss and had to go to the hospital

making a

> prior appointment so that they could clear the vampire ward so I

did

> not upset other patients and they could use all three nurses to

hold

> me down for the procedure.

>

> Anyway I later found out that I could in fact refuse all further

> tests - I never had a single needle in my second pregnancy.

Needless

> to say I did everything I could to have a natural birth (to avoid

> needles!) and succeeded!

>

> Then I started to look into the whole question of vaccinations and

in

> my own haphazard way I have decided not to vaccinate my beautiful

> boys anymore.

>

> Max had his baby jabs and the first MMR (all months after they

were

> meant to be scheduled as I felt his system was to immature to

> withstand the insult). And I deeply regretted it - especially the

> MMR as I felt entirely conned into that one - I had kept saying no

> and then one day the doctor got me at a weak moment and so it was

> done there and then.

>

> When Luca arrived I had already decided that he would not be

> vaccinated and he is wonderfully insult free. We visit the

homeopath

> regularly (going again tomorrow) and have done since his birth.

Even

> his cranial osteopath noticed straight away that he was not

vaxed.

>

> The other experience I have had was I had ME from 1991-1993 and am

> convinced that it was in part caused by the set of immunisations I

> had to go to Indonesia on our honeymoon in 1991. It took copious

> amounts of valium to have the jabs because of my phobia and then

> about 2 months later I started getting virus after virus which

lead

> to the ME. huge bad news!

>

> So that is some of my rambling past and part of the reason why I

have

> come to this list. I look forward to finding out some accurate

> information that will help me articulate my instincts and justify

> them to others where necessary. (So far my dh has not argued with

me

> too much but I suspect that he thinks we will vax Luca " at some

> point " )

>

> Anyway - thanks for the info - wish I had more time to read it all

> NOW!

>

> Love Alison

Posted January 2, 2005 · January 2, 2005

,

Hello and welcome! I am sure you will recieve many more posts, but

I would say it is very necessary for you to seek out the best advice

and understanding from a highly qualified surgeon who has done many

of these types of surgeries. Doing primary Scoli surgery and doing

revisions are two different animals, they say. Since the population

of us aging Harrington Rod victims is really just coming to bear,

you will have to dig or travel a little to find doctors that have

done upwards of a couple hundred, but I know I thought my spine was

worth the extra effort!

You are looking for someone who has experience and good outcomes

with revising an alredy revised spine, and you shouldn't be shy

about ascertaining that. I know if you go through back messages on

this site, as well as all the files and links here you will come up

with names that are repeated many times, and those are probably

worth starting with.

You didn't say how old you are or where you live...maybe that would

help us help you! I know in my case, not revised yet, scheduled for

this Feb., my doctore (Rand) first saw me and knew that I wasn't

ready for surgery, either because he has enough experience with

seeing the shock and dismay of patients first learning what the

future looks like, or simply because I wasn't and had not been in

all that much pain for very long. You have to be ready to undertake

this kind of surgery, no question. It doesn't sound like you are

close either....and maybe you never will be ..but it still doesn't

mean that you couldn't benefit from getting yourself under the care

of someone qualified to handle the uniqueneess of your back.

Incidently, I will be having a two-stage surgery, and I know that

the surgery can be broken down into even smaller, more bite sized

pieces, so you shouldn't assume you are not a candidate because you

have other issues...I think someone recently posted about some

patients that were well into their 70,80 and 90's that had

succesfful revisions. Only a qualified doctor can tell you what is

right for you...and then a few different opinions would probably be

worthwhile!

If you don't have family that is all that supportive,it probably

would be a good idea to try to include at least one family member in

your consultation with a specialist. I know my husband's eyes were

wide open after getting a chance to hear the doctors speak about my

back and the surgery. He was certainly helpful before, but I think

on some level he just thought I ought to get " over it " and as you

know, that is pretty tough to do when you are in pain or discomfort

all the time.

I hope your therapist is knowledgable about your situation.....be

careful....I know there have been a few discussions here about how

someone doing PT might not necessarily know all they need to treat

your problem, so if it stikes you as more hurtful than helpful be

bold about saying so! It seems like almost every one of us has been

told to persue swimming. I got back in the pool in November to try

to improve my cardio strength prior to surgery and I feel bettter

and stronger. Maybe you have a place close by that actually has a

hydro-therapy program? I know I wish I did, no alas, I do not. I

just devised my own program after attending a water aerobics class

and watching a video. I do alot of backstroke and under-water

running and x-country ski moves and that seems to do the trick. I

couldn't do any of that on dry land!

Best wishes, Cam

Posted January 2, 2005 · January 2, 2005

Welcome, . I'm sorry to hear of the trouble you are having. I would

definitely seek an opinion from a specialist in adult surgically-treated

scoliosis, who could go over your options with you, and maybe recommend a

fusion-savvy therapist (if such an animal exists), and/or a neck specialist, if

s/he does not do necks.

(I'm a great one to talk, as I've been putting off seeing a revision surgeon for

over 4 years, and I do know for sure that I have flatback.)

I wish you the best in sorting this out and getting the help you need.

Sharon

Another new member

I had Harrington Rod Surgery in 1981, a refusion in 1983 and the original rod

taken out with a harrington compression rod put in, then in 1988 was fused to

the sacrum and no longer have any instrumentation. Pain level has been

very low but I tilt pretty far over and now have found out I have severe

cervical

stenosis that is compressing the cord though I only have slight symptoms in

the hands (they fall asleep periodically) but have neck pain. An ortho MD

(supposedly had a year of scoliosis training) said if I fall or am rear-ended

I

could come a quad. Naturally this scared me to death. I do not think I want

the full revision surgery (had a heart valve replaced and that surgery could

be

too stressful) I do not know what to do next. I started Physical therapy but

the

only exercise I can do is walk and swim. Is is worth having a revision

specialist look at this just for their knowledge about such messed up backs?

I really need some advice as my family is not supportive.

Thanks!

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

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

Posted January 10, 2005 · January 10, 2005

Also--I have a sweet taste in my mouth the last couple of days,

almost like a splenda aftertaste, you know? And I haven't been

eating anything with sugar in it.....except fruit, but doesn't that

seem weird?

I am so happy I found you all, but please forgive me if I seem

ignorant, I just found this forum and haven't been able to read much

of it yet.

>

> I am a new member, just found this forum. I am excited to see if

> this can be " licked " because I am sick to death of feeling this

way.

>

> I am leaving on vacation next Monday, and my hands and lower arms

are

> COVERED with eczema, and my neck with hives. I have also noticed

that

> I am bruising very easily, which really concerns me. After the

sugar

> of the holidays everything got worse, so I am assuming it is

> candida. I started a parasite cleanse just prior to Christmas(for

2

> weeks) then did a liver cleanse last Wednesday (small stones, tiny

> really). I'm no expert at this, but am trying. What really

concerns

> me is that I can't get rid of the eczema, which is unusual for me,

> and that I bruise so easily. Any help you can provide will be MOST

> appreciated.

>

> Connie

Posted January 10, 2005 · January 10, 2005

Hi Connie. Welcome to the group (and all the others I

may have missed). Excema could be caused by a number

of things. I would definately try the anti candida

diet as prescribed in the files section of this site.

You might try some coconut oil on the rash and see

what happens. Just a thought. My daughter and I have

both had excema at times. I had a small tube of

something from the allergist that worked wonders.

Could go find it if you like but try natural first.

Hugs, Carol B (I'm sure others will have more answers)

__________________________________________________

Posted February 7, 2005 · February 7, 2005

Shaun,

I'm so sorry to let you know that you just missed our food swap / potluck.

We held it this past Saturday. The next one is planned for May. But maybe

some of us would be willing to get together before then just for

socializing?......

Do you live in the metro area?

Therese

>

> Does anyone on the list-serv have potlucks? Or would anyone be

> interested in starting them? I'm looking forward to meeting folks

> and sharing some good food if anyone is interested. Thanks!

>

> Shaun

>

Posted September 15, 2005 · September 15, 2005

Hi ,

I have to ask... did you ever get vaccinated at all? If not, are YOU

healthy? Did you ever contract any of the " vaccine preventable "

diseases? How did you fare? Were you maimed or forever injured by

one of these diseases? I'm going to guess (and hope) that the answer

is no. Shouldn't that be some proof to your partner that not

vaccinating doesn't carry the huge risks that medpros would like us to

believe that it does?

My next question is... did you give birth or your partner (or did you

adopt)? If you are nursing her then wow, what a lucky girl! She's

getting all of your natural immunities via breastmilk - she's going to

be the healthiest kid on the block!

When my partner and I were deciding on whether or not to vaccinate, I

decided that while I was nursing him, it just didn't make any sense to

vaccinate. So I knew we had at least a year to decide (he's 4 and

still nursing, lol). We had been talked into a few by our ped, but I

put the brakes on them until I had a clearer answer for myself because

I knew it didn't feel right and, the most important thing, once you

put a vaccine in, you can NEVER take it out... ever. When that year

was up, I had done enough research to feel confident and said NO to

anymore vaccines.

My partner just gave birth to our daughter a month ago, and we are not

giving her any vaccinations, didn't even do the Vit K shot, and are

confident that homeopathy will help us through any illnesses we

encounter (and I can tell you that my son has a minor illness maybe 1

or 2 times a year, never an ear infection, all dealt with by waiting

or with homeopathy). I will say that my partner is not as " on board "

as I am, but trusts me and trusts that I have done enough research and

wouldn't put our children in harms way. She got a little jumpy when

our son had the flu, but we were on the phone with the homeopath often

and when his fever finally broke without succumbing to Tylenol, we

were both relieved.

Don't know if any of that helps :-)

~ danielle

> Hello, my name is . We have a 8 week old baby and have

decided to

> delay her vaccinations until we are better informed so that we can

make the

> best decision we are able to. Of course this is not easy given the

large

> amount of conflicting information out there. Growing up in the UK

with a

> German mother who solely believed in homeopathy, I was not

vaccinated for

> most things and when I got sick was treated with homeopathic treatments.

> Therefore with all the risks involved with vaccinations, I am leaning

> towards not vaccinating, and letting my daughter ride out the

illnesses when

> she gets them. My partner however is a little more inclined to give the

> vaccinations as she sees the risks of the illnesses as greater than

those of

> the vaccinations, so we are trying to get as much info as we can.

>

> Look forward to reading all the input in this group.

>

> C

>

Posted September 16, 2005 · September 16, 2005

Hi there

I did get vaccinated for a few things…

- smallpox when I was an infant, not sure how old

- TB when I was 14 or 15, which we were told in school that we had to have

- MMR when I was 18 as I was told that I could not go to college in the US

without it (even though I had had all 3 disease, but because you can get

Rubella more than once!) I was completely naïve that I could be exempt from

this, but luckily I was not a baby when I got it)

I did get most of the childhood diseases:

Chicken pox

Measles

Rubella

Mumps

Whooping cough

Scarlet fever

None of these were treated with antibiotics or conventional medicines, but

all with homeopathy or alternative treatments, such as cold leg compresses

to bring down the fever, lemon juice with honey to help coughs and sore

throats, alternative suppositories etc. I don’t remember much about having

the illnesses other than the treatment was not that fun – cold compresses,

suppositories, not being able to play with other kids, missing the first day

of school!

Some other interesting thoughts as I look back, I never had an ear infection

and very rarely if ever had a cold. I still only very very rarely get sick

and when I do it is over in half the time of most people. Last time was

about 7 years ago with a cold! And I have worked in offices where everyone

was sick around me.

As for my partner, we have had in-person consultations with a local

homeopath and with Randall Neustaeter (wrote The Vaccine Guide) and she

knows that she needs to do the research herself to come to an objective

opinion. For the moment she is fine delaying until we (she) finds out more

information, so for right now I have the upper hand on making the decisions!

But I am confident that she will come around when she gets to reading more,

if she ever finds time for it. So I am not worried either way, I just keep

sending her more and more info that I find on the web! ;-)

OT: A little more about our daughter. She is genetically both of ours as we

used my egg and my partner’s brother’s sperm. I gave birth to her and she

is breastfed, so yes she is very lucky!

I look forward to reading more of the great emails from this group.

C

_____

From: Vaccinations [mailto:Vaccinations ] On

Behalf Of le

Sent: Thursday, September 15, 2005 2:59 PM

Vaccinations

Subject: Re: Another New member