one year later.....

[Guest guest]

Joy,

That's great that you have done so well!! Are you in the Detroit

area? We're in St. Clair Shores. I think there are a few more from

this area in the group. As you may have read in my last post, my

husband is going to TCC next week for Botox. He has Diffuse

Esophageal Spasm, which is similar to A, but his LES works O.K. I

guess we're lucky that TCC is only a few hours away! I'm glad you've

had such success with your surgery and are swallowing normally!

What a great vacation your family had! We hiked the Grand Canyon

once, but only made it to Indian Gardens on Bright Angel Trail (just a

day hike). Beautiful scenery! I'm glad your A didn't get in the way

at all! Hope you have many many more years of successful swallowing!

> Hello group. I wanted to check back in. I just looked at my calendar

> and realized that the 20th will be my 1 year " anniversary " of my

> Heller surgery at the C/C. Reminds me I better make my " check-up "

> appt.

> I had HORRIBLE spasms before the surgery and only 1 (one) mild

> incident lasting less than 2 hours since....so I am THRILLED with that!

> Swallowing - well....basically is normal. So normal in fact that

> I " forgot " I had achalasia until I noticed it on the calandar the

> other day. As a matter of fact....for our family vacation this year

> we backpacked into the Grand Canyon for over a week (filtering water

> from puddles and streams and eating all sorts of bizzarre dried-up

> backpacking food without narry a single problem). Well, eating

> anyway. We did get lost, but that's another story.

> So, yes, I don't eat wontonly with disregard.....but I have had

> this all my life so I have grown accustomed to consuming large amounts

> of beverage with all my meals. (If they ever ban a Big Gulp - that

> will be the day I die).

> Unless the Dr. has anything different to report after a check-

> up....I would say the surgery was a huge success. Shouldn't have put

> it off all those years.

> Sorry I let the Detroit Area Achalasia group " go " but I am always

> here if anyone needs me. And, I see my surgery pics. are still

> posted ...I guess now I should really post some pics. of me with real

> clothes on (hehe)

> Joy

[Guest guest]

Hi ,

Yes, Bloomfield.

I had botox about a year before my surgery just as a " stop-gap "

measure to get me functioning and not just eating over the kitchen

sink. Too many rush trips to the emergency room before my swollower

would decide to relax and release the food (I do hate choking and not

breathing).

It's odd...because 3 years ago we did Grand Canyon on the S.

Kaibab and stayed at Phantom Ranch and then up the Bright

Angel.....horrid spasms the whole time and I was sipping water and

subsequently needing to urinate the whole time....(on a main trail in

a desert environment with NO TREES around....that's a big worry).

The more I sipped to soothe the more pressure as my bladder would

fill and push up....it was a vicious circle of endless pain. I

nibbled every pain killer and antacid in my pack to no avail.

Anyway, funny that I didn't think twice about this trip....knowing we

would be going to an area where we wouldn't see anybody else for days

and NOT have a water source and NOT even be able to use a cell phone

if something did happen. Guess that's a testament to how " normal "

things are.

Hope all goes well with you husband. Is he seeing Dr. Rice?

Joy

> Joy,

> That's great that you have done so well!! Are you in the

Detroit

> area? We're in St. Clair Shores. I think there are a few more from

> this area in the group. As you may have read in my last post, my

> husband is going to TCC next week for Botox. He has Diffuse

> Esophageal Spasm, which is similar to A, but his LES works O.K. I

> guess we're lucky that TCC is only a few hours away! I'm glad

you've

> had such success with your surgery and are swallowing normally!

> What a great vacation your family had! We hiked the Grand

Canyon

> once, but only made it to Indian Gardens on Bright Angel Trail

(just a

> day hike). Beautiful scenery! I'm glad your A didn't get in the

way

> at all! Hope you have many many more years of successful

swallowing!

>

>

>

>

> > Hello group. I wanted to check back in. I just looked at my

calendar

> > and realized that the 20th will be my 1 year " anniversary " of my

> > Heller surgery at the C/C. Reminds me I better make my " check-

up "

> > appt.

> > I had HORRIBLE spasms before the surgery and only 1 (one) mild

> > incident lasting less than 2 hours since....so I am THRILLED with

that!

> > Swallowing - well....basically is normal. So normal in fact

that

> > I " forgot " I had achalasia until I noticed it on the calandar the

> > other day. As a matter of fact....for our family vacation this

year

> > we backpacked into the Grand Canyon for over a week (filtering

water

> > from puddles and streams and eating all sorts of bizzarre dried-

up

> > backpacking food without narry a single problem). Well, eating

> > anyway. We did get lost, but that's another story.

> > So, yes, I don't eat wontonly with disregard.....but I have

had

> > this all my life so I have grown accustomed to consuming large

amounts

> > of beverage with all my meals. (If they ever ban a Big Gulp -

that

> > will be the day I die).

> > Unless the Dr. has anything different to report after a check-

> > up....I would say the surgery was a huge success. Shouldn't have

put

> > it off all those years.

> > Sorry I let the Detroit Area Achalasia group " go " but I am

always

> > here if anyone needs me. And, I see my surgery pics. are still

> > posted ...I guess now I should really post some pics. of me with

real

> > clothes on (hehe)

> > Joy

[Guest guest]

-Thankyou

Hearing your story is a great inspiration for me as I think this is

the path I may be looking at soon. I would like to think I could get

on with life and again do some of the activities I always intended to

do.

-- In achalasia , " Joy " <q.t@s...> wrote:

> Hello group. I wanted to check back in. I just looked at my

calendar

> and realized that the 20th will be my 1 year " anniversary " of my

> Heller surgery at the C/C. Reminds me I better make my " check-up "

> appt.

> I had HORRIBLE spasms before the surgery and only 1 (one) mild

> incident lasting less than 2 hours since....so I am THRILLED with

that!

> Swallowing - well....basically is normal. So normal in fact that

> I " forgot " I had achalasia until I noticed it on the calandar the

> other day. As a matter of fact....for our family vacation this

year

> we backpacked into the Grand Canyon for over a week (filtering

water

> from puddles and streams and eating all sorts of bizzarre dried-up

> backpacking food without narry a single problem). Well, eating

> anyway. We did get lost, but that's another story.

> So, yes, I don't eat wontonly with disregard.....but I have had

> this all my life so I have grown accustomed to consuming large

amounts

> of beverage with all my meals. (If they ever ban a Big Gulp - that

> will be the day I die).

> Unless the Dr. has anything different to report after a check-

> up....I would say the surgery was a huge success. Shouldn't have

put

> it off all those years.

> Sorry I let the Detroit Area Achalasia group " go " but I am

always

> here if anyone needs me. And, I see my surgery pics. are still

> posted ...I guess now I should really post some pics. of me with

real

> clothes on (hehe)

> Joy

[Guest guest]

Hi ,

I remember too that not only was I freaking about the surgery a

year ago....but I made my family take summer vacation to Mexico so

that I could have a great beach vacation.....just in case I ended up

riddled with scars. Well, I giggle now to think how silly I

was....and my husband took me back to Mexico for our 20th anniversary

(7mo. after surgery)....and you would have been hard pressed to see

the tiny little scars. (Well, I shouldn't probably have been in a

skimpy bikini.....so nobody would have noticed the scars anyway

(hehe)...but hey, it was just us and the sunshine and the scars are

teeny tiny! And, to top it off....ate from every weird little taco

shack we came across for 4 days with NO trouble!! I DO hate warm pop

though.

But, basically, what I want to convey, is sometimes the more you

worry ---the worse things are. When I just totally forget

about " it " ....I do great. The only trouble I EVER have swallowing

anymore is when I am thinking about swallowing because I know someone

is watching me (who knows about " it " ) Ah weird.

Wishing you all the best.

Joy

> > Hello group. I wanted to check back in. I just looked at my

> calendar

> > and realized that the 20th will be my 1 year " anniversary " of my

> > Heller surgery at the C/C. Reminds me I better make my " check-

up "

> > appt.

> > I had HORRIBLE spasms before the surgery and only 1 (one) mild

> > incident lasting less than 2 hours since....so I am THRILLED with

> that!

> > Swallowing - well....basically is normal. So normal in fact

that

> > I " forgot " I had achalasia until I noticed it on the calandar the

> > other day. As a matter of fact....for our family vacation this

> year

> > we backpacked into the Grand Canyon for over a week (filtering

> water

> > from puddles and streams and eating all sorts of bizzarre dried-

up

> > backpacking food without narry a single problem). Well, eating

> > anyway. We did get lost, but that's another story.

> > So, yes, I don't eat wontonly with disregard.....but I have

had

> > this all my life so I have grown accustomed to consuming large

> amounts

> > of beverage with all my meals. (If they ever ban a Big Gulp -

that

> > will be the day I die).

> > Unless the Dr. has anything different to report after a check-

> > up....I would say the surgery was a huge success. Shouldn't have

> put

> > it off all those years.

> > Sorry I let the Detroit Area Achalasia group " go " but I am

> always

> > here if anyone needs me. And, I see my surgery pics. are still

> > posted ...I guess now I should really post some pics. of me with

> real

> > clothes on (hehe)

> > Joy

[Guest guest]

Thanks Joy,

We too have not long been to the beach in Fiji. We went for a

conference for work( tough isn't it). I enjoyed the trip and spent a

lot of the spare time just sitting on the beach watching my husband

Trevor and the girls snorkelling. I did go in and snorkel twice but

did not last long and was really exhausted afterwards. I just dosed a

lot to try and keep up.

I hated the fact that part of the experience is the food and the

resort had 5 restaurants and I really struggled with finding things

to successfully eat. It was becoming distressing. I have always been

a big eater and enjoy it and always been energetic.

I used to always wear my girls out doing things outdoors now they

wear me out with daily routines.

We have also had our 20th anniversary this year and I celebrated my

40th birthday recently, both of which my family and friends

celebrated and I sat and enjoyed their company and support. I was

really sick.

Thankyou

> > > Hello group. I wanted to check back in. I just looked at my

> > calendar

> > > and realized that the 20th will be my 1 year " anniversary " of

my

> > > Heller surgery at the C/C. Reminds me I better make my " check-

> up "

> > > appt.

> > > I had HORRIBLE spasms before the surgery and only 1 (one)

mild

> > > incident lasting less than 2 hours since....so I am THRILLED

with

> > that!

> > > Swallowing - well....basically is normal. So normal in fact

> that

> > > I " forgot " I had achalasia until I noticed it on the calandar

the

> > > other day. As a matter of fact....for our family vacation this

> > year

> > > we backpacked into the Grand Canyon for over a week (filtering

> > water

> > > from puddles and streams and eating all sorts of bizzarre dried-

> up

> > > backpacking food without narry a single problem). Well, eating

> > > anyway. We did get lost, but that's another story.

> > > So, yes, I don't eat wontonly with disregard.....but I have

> had

> > > this all my life so I have grown accustomed to consuming large

> > amounts

> > > of beverage with all my meals. (If they ever ban a Big Gulp -

> that

> > > will be the day I die).

> > > Unless the Dr. has anything different to report after a

check-

> > > up....I would say the surgery was a huge success. Shouldn't

have

> > put

> > > it off all those years.

> > > Sorry I let the Detroit Area Achalasia group " go " but I am

> > always

> > > here if anyone needs me. And, I see my surgery pics. are still

> > > posted ...I guess now I should really post some pics. of me

with

> > real

> > > clothes on (hehe)

> > > Joy

[Guest guest]

Thanks Joy,

We too have not long been to the beach in Fiji. We went for a

conference for work( tough isn't it). I enjoyed the trip and spent a

lot of the spare time just sitting on the beach watching my husband

Trevor and the girls snorkelling. I did go in and snorkel twice but

did not last long and was really exhausted afterwards. I just dosed a

lot to try and keep up.

I hated the fact that part of the experience is the food and the

resort had 5 restaurants and I really struggled with finding things

to successfully eat. It was becoming distressing. I have always been

a big eater and enjoy it and always been energetic.

I used to always wear my girls out doing things outdoors now they

wear me out with daily routines.

We have also had our 20th anniversary this year and I celebrated my

40th birthday recently, both of which my family and friends

celebrated and I sat and enjoyed their company and support. I was

really sick.

Thankyou

> > > Hello group. I wanted to check back in. I just looked at my

> > calendar

> > > and realized that the 20th will be my 1 year " anniversary " of

my

> > > Heller surgery at the C/C. Reminds me I better make my " check-

> up "

> > > appt.

> > > I had HORRIBLE spasms before the surgery and only 1 (one)

mild

> > > incident lasting less than 2 hours since....so I am THRILLED

with

> > that!

> > > Swallowing - well....basically is normal. So normal in fact

> that

> > > I " forgot " I had achalasia until I noticed it on the calandar

the

> > > other day. As a matter of fact....for our family vacation this

> > year

> > > we backpacked into the Grand Canyon for over a week (filtering

> > water

> > > from puddles and streams and eating all sorts of bizzarre dried-

> up

> > > backpacking food without narry a single problem). Well, eating

> > > anyway. We did get lost, but that's another story.

> > > So, yes, I don't eat wontonly with disregard.....but I have

> had

> > > this all my life so I have grown accustomed to consuming large

> > amounts

> > > of beverage with all my meals. (If they ever ban a Big Gulp -

> that

> > > will be the day I die).

> > > Unless the Dr. has anything different to report after a

check-

> > > up....I would say the surgery was a huge success. Shouldn't

have

> > put

> > > it off all those years.

> > > Sorry I let the Detroit Area Achalasia group " go " but I am

> > always

> > > here if anyone needs me. And, I see my surgery pics. are still

> > > posted ...I guess now I should really post some pics. of me

with

> > real

> > > clothes on (hehe)

> > > Joy

[Guest guest]

Hi ,

You wrote " I used to always wear my girls out doing things outdoors

now they wear me out with daily routines. "

> We have also had our 20th anniversary this year and I celebrated my

> 40th birthday recently......... "

O.K.........so on that one we are in the same boat too! But I always

attribute everything BAD to my age (hehe) and not the surgery or " A. "

So what's wrong with relaxing on the beach.....sounds great to me!

Joy

[Guest guest]

-Hi Joy,

I don't let my age worry me at all. I think we are at a great age. Just

need to get the health under control to enjoy it more.

Need to eliminate one problem at a time and stay positive.

-- In achalasia , " Joy " <q.t@s...> wrote:

> Hi ,

> You wrote " I used to always wear my girls out doing things

outdoors

> now they wear me out with daily routines. "

> > We have also had our 20th anniversary this year and I celebrated my

> > 40th birthday recently......... "

>

> O.K.........so on that one we are in the same boat too! But I always

> attribute everything BAD to my age (hehe) and not the surgery or " A. "

> So what's wrong with relaxing on the beach.....sounds great to me!

> Joy

[Guest guest]

Joy,

That doesn't sound like a fun hike you had 3 years ago! The pain

of spasms would be bad enough, let alone having to try to find some

privacy for bathroom stops from drinking all the water! I remember

how barren Bright Angel trail was - not much privacy there! That is a

good testament to how good you feel, now, since you didn't even think

twice about the trip this year.

My husband is seeing Dr. Achkar for the Botox. He said he

consulted with his surgeon (I believe Dr. Rice) after we were there

Aug. 2nd for tests and initial consultation and they decided they

wouldn't recommend surgery at this time. We have lots of questions

for him, including why he wants to delay surgery and do more Botox.

My husband has had Botox twice before, done at Troy Beaumont, with

only very limited success. Dr. Achkar said he'd like to administer it

himself this time. The way he talked about the long myotomy that they

do for Diffuse Esophageal Spasm, it doesn't sound as effective as the

Heller's is for A patients. If the Botox doesn't work (and we're not

holding our breath on it), I'd like to hear what Dr. Rice has to say

about the success rates of the long myotomy, unless they come up with

something else to treat my husband with. I've read that DES can lead

to A, so I'm wondering if they're holding out to see if his LES

decides to quit cooperating or what. Oh, well, I guess we better get

busy with the list of questions for Dr. Achkar. He was kind of quick

with us when we met him last month, so I'm hoping we can pin him down

to get some more answers Tuesday. At least he told us it was DES,

unlike the U of M doctor that just said it was an esophagus motility

disorder (without being more specific) and only recommended lifestyle

changes to my husband. My husband wasn't too happy with that, since

he's tried a lot of different things in the 3 years that he's had

this! After losing 60+ lbs. and missing lots of time from work, he

felt he needed more aggresive treatment than that (and his Beaumont

doctor agreed)! Thanks for your well wishes!

P.S. Have you ever hiked in the Smokies? The hike to LeConte Lodge

there is very pretty (in a different way than Grand Canyon). We've

done that one a couple of times.

> > > Hello group. I wanted to check back in. I just looked at my

> calendar

> > > and realized that the 20th will be my 1 year " anniversary " of my

> > > Heller surgery at the C/C. Reminds me I better make my " check-

> up "

> > > appt.

> > > I had HORRIBLE spasms before the surgery and only 1 (one) mild

> > > incident lasting less than 2 hours since....so I am THRILLED with

> that!

> > > Swallowing - well....basically is normal. So normal in fact

> that

> > > I " forgot " I had achalasia until I noticed it on the calandar the

> > > other day. As a matter of fact....for our family vacation this

> year

> > > we backpacked into the Grand Canyon for over a week (filtering

> water

> > > from puddles and streams and eating all sorts of bizzarre dried-

> up

> > > backpacking food without narry a single problem). Well, eating

> > > anyway. We did get lost, but that's another story.

> > > So, yes, I don't eat wontonly with disregard.....but I have

> had

> > > this all my life so I have grown accustomed to consuming large

> amounts

> > > of beverage with all my meals. (If they ever ban a Big Gulp -

> that

> > > will be the day I die).

> > > Unless the Dr. has anything different to report after a check-

> > > up....I would say the surgery was a huge success. Shouldn't have

> put

> > > it off all those years.

> > > Sorry I let the Detroit Area Achalasia group " go " but I am

> always

> > > here if anyone needs me. And, I see my surgery pics. are still

> > > posted ...I guess now I should really post some pics. of me with

> real

> > > clothes on (hehe)

> > > Joy

[Guest guest]

,

Dr. Achkar wanted to do another Botox with me also...but Dr. Rice

wanted to do the surgery and said the Botox would cause scar tissue

that would not be good in the long run and make the outcome of a

possible future surgury less predictable (positive)....so we just did

the surgery. Best thing I ever did!

Where in the Smokies do you hike....I would love more info.

My husbands birthday is coming up in a couple weeks and I need a

family " getaway plan " for a weekend to celebrate. Do you do any

hiking nearby?

Joy

[Guest guest]

....I was just kidding you about " keeping up with kids "

comment. It's just the faster they get....the slower we get - go

figure!

Joy

> > Hi ,

> > You wrote " I used to always wear my girls out doing things

> outdoors

> > now they wear me out with daily routines. "

> > > We have also had our 20th anniversary this year and I

celebrated my

> > > 40th birthday recently......... "

> >

> > O.K.........so on that one we are in the same boat too! But I

always

> > attribute everything BAD to my age (hehe) and not the surgery

or " A. "

> > So what's wrong with relaxing on the beach.....sounds great to me!

> > Joy

[Guest guest]

Joy,

We will definitely ask Dr. Achkar about that in the morning. I've

heard that before, that Botox makes future surgery tougher.

LeConte Lodge is the rustic lodge that we hiked to in the

Smokies. I believe it is run by the Smokey Mountain National Park

System and it's on the top of Mt. LeConte (at 6593 ft., it's the third

highest peak in the Smokies). The trails leading to it are the Alum

Cave Trail, Bull Head Trail, Rainbow Falls Trail, Trillium Gap Trail

and the Boulevard Trail. Alum Cave is the shortest at 5.5 miles to the

lodge. If I have a chance soon, I'll find a link for it on the web

and e mail it to you. We haven't hiked LeConte since 1999 and we

haven't really done much hiking close to home, so I'm not sure I have

any ideas for your family weekend. Hmm...There are some nice areas in

Ontario, if you don't mind driving a little bit. Tobermory, Ontario

is very scenic, on the Georgian Bay. There is some hiking along the

Niagara Escarpment near there, with rocky cliffs overlooking the bay.

It's about 5 hours' drive from the Detroit area. That's the last

place we hiked. Or, if you have more time, Lake Superior Provincial

Park is just gorgeous in Northern Ontario, about 1 1/2 to 2 hours

north of Sault Ste. Marie, Ontario. Good luck with your planning and

let me know if you find some other good hiking close to home!

> ,

> Dr. Achkar wanted to do another Botox with me also...but Dr. Rice

> wanted to do the surgery and said the Botox would cause scar tissue

> that would not be good in the long run and make the outcome of a

> possible future surgury less predictable (positive)....so we just did

> the surgery. Best thing I ever did!

> Where in the Smokies do you hike....I would love more info.

> My husbands birthday is coming up in a couple weeks and I need a

> family " getaway plan " for a weekend to celebrate. Do you do any

> hiking nearby?

> Joy

[Guest guest]

Hi Lorian,

About the whealchair, yes and no. I am not always using the whealchair.

I have had a whealchair since 1995 and used it when I went out of the

house. I was able to walk about a km after the flatback operation in

2004 when they tried to fix my flatback. I could stand again but sitting

has never been posible only in akward possions and wich finaly causes

heaps of pain and drop out of my legs. But now all is al most back to

how it was. I can on a good day after lying down walk outside for a bit.

I I have a ajusted house were I can use it if nessasary but usualy can

walk a bit. My problem is that I am not able to sit in a chair so I

mostly have make use of my bed. When my legs drop out I have to use the

chair in the house but the best thing is to ly down and wait till my

legs start doing what i tell them I can use my whealchair for a couple

of hours on a good day stitting in a certain position. It took me

sometime to realize that it was time to use my whealchair again. I had

pused it away for so long till it got to the point that I did not get

out of the house anymore. I finaly took the step again on holidays and

felt " happy " that I could get around with out thinking if I would make

it. I know it is real differnent with you because as I recall you had

no say over your legs do you, and probbalbly have to use it all the

time. I believe that it will take time but never will be easy. I have

been handicapt and mostley bed comitted since I was 21 years old, so I

have had plenty of time to get used to it and getting my life on rails.

I am now 40 years old so I have been this way for 19 years.

We have written each other last year September a month before your

operation. I was shocked to hear wat happend to you, as we all were. We

all no of the risk but, you to, did not expect it to realy to go wrong.

Well about if I have transverse myelitis, no I dont. I coulnt find the

write translation of the dutch word. The translation was this but I

douhted about it. I mean for people who have had an acident or for other

reasons like yourself, no or partly function over there legs and or

arms. This is a trauma centre for them and have 44 beds for them. A side

from these beds there are 71 beds for the other backpatients.

I have due to bad structure growth of the lumbal spine and fanatic

sporting with a couple of bad falls , degeneratie spine probelems wich

started with a herina at 21 and later on spondylodese of S1 to L3. I

have many dural and nerve probems probably due to the operations. Finaly

I was diagnosed with flatback in 2004. When I look back I think I

already had this in 1995 but nobody reconised it before. The operations

after felt a succes but after years it all did not work out because of

hardware loosning, nonunion, scar tussue and of course it not been put

in the write position. In Germany they had a good reason why the last

time had faild. They found that the last surgions intentions were good

but was from the start not possible to hold. He used skrews to short,

old skrew holes and did not go up far enough. So know the skrews witch

are lef tare loose, the positon did not hold and my spine has become

more dammged. I do not hold any thing against him. I know he should not

have done it because he was not experinced enough. But he was the one

who found out what was wrong after all thease years. Well and as you no

there is no tuning back time. Sometimes we make choises and I beleve

that we made them for a reason.....

In Holland you do not hear of flatbacksyndrome. I have studdied (a long

time ago for fysiotherapist, and my friends to but nobody has ever heard

of it. There is no information in dutch at all about flatback syndrome.

About the operation, I hope that I will hear something soon but I you

never now with this hospital seeing everything takes ages.

I think I will be off to bed now (my sleeping bed) it is 11.10 and

tomorrow the kids will be up of to school again.

I found it very nice to hear from you loriann. I wish you to the best

and thanks for your good wishes.

> >

> > Hi there elizabeth and everybody who reads this.

> > I have not been online for about a year now. To be honeset I found

it

> > great to chat at first but later on I did not want to be occupied

> > with flatback so much. Stupid mybe and sorry for that but thats the

> > situation. Therefor I find it great that you elizabeth and all the

> > others are able to.

> > I dont now if you remember my story so I will write it down.

> > I was diagnosed with flatback in 2004 after 5 operations on my back

> > because of all kind of spine problems but not because of a

scoliosis.

> > I had an operation to fix my flatback in the netherlands were I live

> > wich turend out to be a faliure and had the skrews partley taken out

> > again because of nerve jamming.So seven surgerys and still not

> > done..... No body could help me here and so I send dr Bridwell a

mail

> > to ask if he new anybody in the netherlands of in Europe. He advised

> > me three dr. Prof Harms from germany(yes from the Harms cages), prof

> > Webb from great brittan and dr CHopain from france. Dr Bridwell

> > awnserd me te same day and wished me luck!

> > Well anyway, asked advise from dr Webb and prof Harms and they both

> > had about the same idea. Germany is a lot easer from here and it is

> > 420 km from our place (aalten the netherlands) to Karlsbad

> > Langensteinbach.

> > I new I was in the write place seeing they said it was difficult to

> > fix but they have had more difficult cases than me. So I wasent a

> > special case and that made me feel good about it. The hospital has

71

> > beds for back patients en 44 for transverse myelitis (hope that is

> > hou you say it) anyway they have enough knowhow and bridwell advised

> > me.

> > Well great but then I need my insurance to pay and therfore i need

> > papers from the hospital. After heaps of email, phoning,faxes I

> > finaly got the papers at exact one year later! They said they are

> > having so much probems because of all the operations and the patient

> > who come from all over the world. I even heard that they had

patients

> > from your country, australie and so on.

> > You asked me to write if and how I got aprovel from my insurance.

> > Wel the good news is that my insurance agreed yesterday I have to

> > use the E112 form for european countrys. Then all will be paid. Not

> > all hospitals accept this but this hospital does. The only thing is

> > that Prof Harms himself will not operate because he is paid

> > differently (also more). I think that that was not the plan anyway

> > because he only does the most complicated cases. Everything about me

> > is discussed with him. I cryed yesterday of relief. Instead of

> > feeling great I am now very restless. Now I know I will be operated

> > and soon, but when? I would be admitted after aprovel as soon as

> > possible. I have tempory loss of contole of both legs wich has

always

> > returnd till now,this is not a good sigh as you probably know. I can

> > not sit, not stand and hardly walk. I That is wy they finaly wrote

> > the letter for the insurance.

> > I know partley wat they are planing to do, they are probably going

to

> > take the old bone out and reconstruct from S1- till L3, do an

> > ostotomie on L3 and join from S1 till and L1. Maybe they will go up

> > temporary an take the ones above out later. They most certanly are

> > starting at the back then the front and then the back again. I have

> > lots of dural and nerve scars wich must be removed. Well they pland

a

> > day surgery but I will not notice that luckley. I will not no for

> > sure till they have all the information they need wich will be

> > gatherd in the week before the operation.

> >

> > Enough about me, how are you ? And how are you Lorian? Have

> > you gained some strengh or has it stayed as it was after the

> > operation? Hope you both are doning oke.

> >

> > If you want to now exactly how it works with operations in Europe

let

> > me know and I will write it down. They had to will me but it is an

> > insurance so you never know.

> >

> > frendly greetings from a restless woman

> > aalten, the netherlands

> >

>

[Guest guest]

Hi Lida from londen!

We almost live next to each other comparing to the rest of feisty

flatbackers!

I was meaning to go to bed but just a short note tot you. You made me

laugh with your comment of dutch men. Wat gives you that idea? Funny

thing is I had a scottish friend and he thought the women were lovely!

Well poor me because I am from australia (was a kid when I came to the

netherlands).

I wrote loriann what caused my flatback and it was a long story so if

you are up to it ,it is there to read.

What about you how did you land at the feisty flatbackers?

see you.

yolanda

>

> Sorry .... meant to say Yolanda.

>

> one year later.....

>

>

>

> Hi there elizabeth and everybody who reads this.

> I have not been online for about a year now. To be honeset I found it

> great to chat at first but later on I did not want to be occupied

> with flatback so much. Stupid mybe and sorry for that but thats the

> situation.

>

[Guest guest]

Hello Yolanda,

Years ago I worked in oil exploration industry (North Sea oil rigs etc) and most of the male staff were Dutch and American engineers. I was lucky in that all the Dutch men at that time were very good looking and manly, so to me Dutch men are lovely for ever more.

I'm with this group because, from what I can gather in the literature, flatback seems to be almost inevitable for scoliotics who have had the operation. How could the surgeons have got the sagittal balance so wrong long-term?

Regards,

Lida in London

-----Original Message-----From: [mailto: ] On Behalf Of YolandaSent: 10 December 2008 22:32 Subject: Re: one year later.....

Hi Lida from londen!We almost live next to each other comparing to the rest of feistyflatbackers!I was meaning to go to bed but just a short note tot you. You made melaugh with your comment of dutch men. Wat gives you that idea? Funnything is I had a scottish friend and he thought the women were lovely!Well poor me because I am from australia (was a kid when I came to thenetherlands).I wrote loriann what caused my flatback and it was a long story so ifyou are up to it ,it is there to read.What about you how did you land at the feisty flatbackers?

MARKETPLACE

From kitchen basics to easy recipes - join the Group from Kraft Foods

..

[Guest guest]

Hello Lida,

Good question, why did they have it so wrong.

I know it is all it bit different for me because of not having a scolios

but never the less that questions me too.

Why dont we hear about this syndrome in Netherlands? Is it because they

havent got the now how so do not detect it, or did they not make those

mistakes back then or is it because we have less people who had

operations on there spine because of the small amount of people compared

to America? How often do you hear of flatback in England, America and

what about other countrys?

Flatback only started to give problems about 20 years later. In the

meantime so many people all ready had been operated and results were

good back then. Maybe this is one of the reasons why it went wrong with

so many people.

Nice to hear that the Dutch guys have given a good impression because

naturaly they are not all so great!

Best regards ,

Yolanda

>

> Hello Yolanda,

>

> Years ago I worked in oil exploration industry (North Sea oil rigs

etc) and

> most of the male staff were Dutch and American engineers. I was lucky

in

> that all the Dutch men at that time were very good looking and manly,

so to

> me Dutch men are lovely for ever more.

>

> I'm with this group because, from what I can gather in the literature,

> flatback seems to be almost inevitable for scoliotics who have had the

> operation. How could the surgeons have got the sagittal balance so

wrong

> long-term?

>

> Regards,

> Lida in London

>

>

> Re: one year later.....

>

>

>

>

> Hi Lida from londen!

>

> We almost live next to each other comparing to the rest of feisty

> flatbackers!

>

> I was meaning to go to bed but just a short note tot you. You made me

> laugh with your comment of dutch men. Wat gives you that idea? Funny

> thing is I had a scottish friend and he thought the women were lovely!

> Well poor me because I am from australia (was a kid when I came to the

> netherlands).

>

> I wrote loriann what caused my flatback and it was a long story so if

> you are up to it ,it is there to read.

>

> What about you how did you land at the feisty flatbackers?

>

>

> MARKETPLACE

> _____

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> From

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