New to forum

[Guest guest]

>Hello, my name is Judith and I am inquiring about HBOT treatments for my

>neice Nicollette who suffers from Rett Syndrome. it's a severe

>neurological disorder where they can't talk or fend for themselves, many

>girls are wheelchair bound, tubefed, unable to feed themselves. It is a

>life threatening disease, but she is doing well at the moment. as they

>get older they seem to fall apart more and more from what i've seen. she

>is only five now and can still walk although really awkward and clumsy

>like. it's sort like a mix between autism and cerebral palsy in one.

>

>well, that the best analogy i can come up with at the moment. Nicollette

>is a medicaid recepient as she is daughter to my sister who is autistic.

>

>any help or info regarding on how to make steps if there is a process,

>i'de like to know. i am guardian to my sister and her daughter. and would

>like to know what kind of fight i have ahead of me

>

>thank you in advance,

>

>Judith

Judith,

Which state are you in?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

" For everyone who asks receives; he who seeks finds; and to him who knocks,

the door will be opened. " [Luke 11:10]

Freels

2948 Windfield Circle

Tucker, GA 30084-6714

770/491-6776 (phone and fax)

509/275-1618 (efax, sends fax as email attachment)

mailto:dfreels@...

http://www.freelanceforum.org/df

[Guest guest]

Rob....I'm very new to the forum as well. Am very interested in hearing

about the zapper to which you referred. Where to find? Etc..

Thanks, Rae

[Guest guest]

Rae-

This should get you started. Let me know what else I can do... Have a great

day!!!

http://www.elixa.com/estim/zapper.htm

http://www.toolsforhealing.com/products/Zapper/Terminator.htm

http://www.worldwithoutparasites.org/

Rob

Oh and I am still looking for people's feedback on this device. Are people

using this out there?

Re: New to forum

Rob....I'm very new to the forum as well. Am very interested in hearing

about the zapper to which you referred. Where to find? Etc..

Thanks, Rae

[Guest guest]

800-873-1663

Yorkieblu2@... wrote:Rob....I'm very new to the forum as well. Am very

interested in hearing

about the zapper to which you referred. Where to find? Etc..

Thanks, Rae

[Guest guest]

Oops! sent to wrong forum

new to forum

Hi lana

You certainly have had your share of health problems.You have persevered through

so much and you will continue to do so!..That is great that you want to hear for

your son.That will make life so much better for both of you.Have you looked into

getting a seeing eye dog for your son?hey ,maybe you can get 2 dogs.A trained

dog for the hearing handicapped too!!And maybe your son will get his Father back

too.

Dora Weber

Nucleus Volunteer Advocate

dora_weber@...

Bilateral

N22-96

N24C-01

Cochlear Otosclerosis

[Guest guest]

Dear Lavender,

First off, what a pretty name! Welcome to the group, sorry you are going

throught this, but there are many here who are in the same shape, facing

revision surgery, some that are mulling it over, and quite a few of us that

have been through it already. You east coast gals have quite a few great

doc's in your area, I'm out in Denver area and love my surgeon, just not

that same amount of choices out here. Go to the Files section of the site

and a good place to start is to read the Stories file, when you start

reading there you won't feel so alone in this, there is a lot of us that had

Harrington Rod's placed in the 60's, 70's, and 80's who are now going

through this new battle with Scoliosis. There are many here that probably

will chime in on Doc's in your area, my suggestion is to get at least two

opinions. Once again welcome, you are among friends!

Colorado Springs

[ ] new to forum

> hello everyone! I'm new to this forum. I had scoliosis surgery

> (harrington)at 10 years old and then again at 12. I'm 43 now. I am so

> completely bummed because i thought it was all behind me. I guess i

> cant complain too much because i had almost 30 years with no problems.

> I think 2006 will be the year of revision surgery for me. The pain is

> getting worse and is almost constant. I must admit i'm terrified to be

> facing this. I saw a doc at Duke about 2 years ago and he confirmed

> that i needed this surgery. I've heard that a Doctor Kostiuk(spelling?)

> at JOhns Hopkins in Baltimore is wonderful. Even the doc at Duke sang

> his praises. . I gotta start making my plans. My pulmonary doc (yes, i

> have lung function issues) said, " Don't wait till you're in agony to

> have this surgery...It'll be that much harder on you " . Anyway its nice

> to know there are some nice folks to talk to about all this. I

> seriously believed i was the " only one " at first. I should've known

> better, right? I'm open to suggestions, ideas, and advice if you have

> any. Nice meeting you! -Lavender

>

>

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

[Guest guest]

Hi Lavender,

Is that your " nom de plume " or for real? It's great. Welcome to our

little corner of the world. Sorry you are in a position to share our

bad luck...as you say it is quite stunning when all of a sudden you

find yourself redoing this surgery in your 40's or 50's when you

thought you were all set!

You must live in the south if you are looking at doctors in that

area. I have read of Dr Kostuik, I think...but perhaps more in

relation to primary scoli surgery.

Anyway, if you are starting to look toward surgery you should

consider narrowing your list to two doctors and see them both for

opinions before you proceed. Who was the doctor at Duke...why are

you not considering him for for your surgeon?

Well, we are all in various stages of post Harrington life...some

thinking about surgery...some not...some revised. I think we can

share insight on just about any revision issues you can come up

with...so don't be shy.

Welcome! Cam

>

> hello everyone! I'm new to this forum. I had scoliosis surgery

> (harrington)at 10 years old and then again at 12. I'm 43 now. I am

so

> completely bummed because i thought it was all behind me. I guess

i

> cant complain too much because i had almost 30 years with no

problems.

> I think 2006 will be the year of revision surgery for me. The pain

is

> getting worse and is almost constant. I must admit i'm terrified

to be

> facing this. I saw a doc at Duke about 2 years ago and he

confirmed

> that i needed this surgery. I've heard that a Doctor Kostiuk

(spelling?)

> at JOhns Hopkins in Baltimore is wonderful. Even the doc at Duke

sang

> his praises. . I gotta start making my plans. My pulmonary doc

(yes, i

> have lung function issues) said, " Don't wait till you're in agony

to

> have this surgery...It'll be that much harder on you " . Anyway its

nice

> to know there are some nice folks to talk to about all this. I

> seriously believed i was the " only one " at first. I should've

known

> better, right? I'm open to suggestions, ideas, and advice if you

have

> any. Nice meeting you! -Lavender

>

[Guest guest]

Hi Lavender, Welcome to the group. I had Harrington rod surgery in

1976--fusion T3-L1. I made it almost 30 years without surgery. Had

fusion from L1-L5 with rod extension and 2 cages on Oct. 13th. My

surgeon is Dr. Lloyd Hey in Raleigh,NC. He is very knowledgeable and

so kind. All he does is spine and scoliosis surgery When I e-mail

him, he gets back to me in a timely manner. I am doing well-still

have some bad days but they are getting fewer. I go for my check up

on Dec. 7th. I live in South Carolina. Thought you might be in the

south too since you mentioned Duke. Let me know if you want me to

send info on Dr. Hey, tel#, address, etc. Hope you find some relief

soon. Janet

>

> hello everyone! I'm new to this forum. I had scoliosis surgery

> (harrington)at 10 years old and then again at 12. I'm 43 now. I am

so

> completely bummed because i thought it was all behind me. I guess

i

> cant complain too much because i had almost 30 years with no

problems.

> I think 2006 will be the year of revision surgery for me. The pain

is

> getting worse and is almost constant. I must admit i'm terrified

to be

> facing this. I saw a doc at Duke about 2 years ago and he

confirmed

> that i needed this surgery. I've heard that a Doctor Kostiuk

(spelling?)

> at JOhns Hopkins in Baltimore is wonderful. Even the doc at Duke

sang

> his praises. . I gotta start making my plans. My pulmonary doc

(yes, i

> have lung function issues) said, " Don't wait till you're in agony

to

> have this surgery...It'll be that much harder on you " . Anyway its

nice

> to know there are some nice folks to talk to about all this. I

> seriously believed i was the " only one " at first. I should've

known

> better, right? I'm open to suggestions, ideas, and advice if you

have

> any. Nice meeting you! -Lavender

>

[Guest guest]

Hi Cam, thanks for the warm welcome. No, its not actually my real name

its just my on line moniker. The doc i saw at Duke was

. I really liked him and he was very honest with me however

he said he had only done about 30 revision surgeries. I think he

suggested Dr. Kostiuk because he had so much more experience and he

had heard so many good things about him. The doctor that did my

surgery so many years ago also mentioned him. Now i hear this doctor

has retired. Perhaps i wont be going to s Hopkins after all. I

have an appointment with my neuro-surgeon next week and i'm going to

try an epidural injection to the spine to give me some relief from the

pain i've been having lately. I don't do narcotic pain-killers very

well. They make me sick. I've tried the epidural one other time but it

really did'nt do anything for me. I'm hoping this time might work. I

keep singing that ny Cash song to myself...Burning Ring Of Fire,

because that's exactly what the lower half of my spine feels like

lately. It burns, burns, burns. Oh well, in my next life i'm gonna

have a good spine! Cheers! Happy turkey day! -Lavender

[Guest guest]

Hi Janet! Thanks for the reply. Yes i would love info on Dr. Hey. May

i ask, what are cages? And i'm sorry if i'm being a little dim but was

that revision surgery you had this past october? I'm glad to hear that

you are getting better. It's so nice to hear some good news. Yes, I'm

in the south...Virginia. It would be nice to go to NC instead of

land or DC. It would be a relief actually. I'm more familiar with

the Raleigh/Durham area. So nice to speak to you and i hope your days

get better and better. Thanks again, -Lavender

[Guest guest]

Lavender,

It sounds like you are off to a good start looking for an experienced

revision surgeon. It is good to hear that your doctor, with 30 under

his belt, did not feel comfortable proceeding. That squares with all

that I have read indicating that you would ideally like to find a

doctor who had performed this surgery many times with good result.

As you go through the process you should not be shy about qualifying

any doctor you speak to...you are the consumer!

I had two epidurals with only small, short term success...but I know

what you mean...that burning fire...you will try anything to get it to

stop. Good luck...sometimes they say it can take a few injections to

get maximum result. Surgery fixed the pain, and left me straight and

tall...so no complaints there...but getting between diagnosis, second

opinions and scheduled surgery was pretty grueling.

Take Care, Cam

[Guest guest]

Hi Lavender, Yes, my surgery was Oct 13th, 2005. I am recovering

nicely, just get tired so easily. Not sure if I can explain this

right, but cages are some kind of metal that is used to help keep

vertebra apart. Some of my vertebra had curved so that the were

touching on one side. He said the cages would give more support in

keeping these vertebra apart. I have alot of ?? about my surgery

when I go for my visit--need some explanations of some of the things

my husband said Dr. Hey told him. Hubby didn't ask ? I would have--

don't think he really knew what to ask-he was just glad the surgery

went well. I am a nurse so of course I would have ? hubby wouldn't

think of. I didn't think of these ? while I was in hospital. Things

sort of a blur except when the PT came in to get me up to walk.

Standing was very painful at first.

Here is the info for Dr. Hey:

Dr. Lloyd Hey, MD,MS

Hey Clinic for Scoliosis and Spine Surgery

3404 Wake Forest Road--Suite 203

Raleigh, NC 27609

Tel#: (919) 790-1717

Fax#: (919) 573-9438

Website: www.heyclinic.com

Dr. Hey's e-mail: hey@...

He has been wonderful to me and I hope that you will see him for an

opinion. He was the 3rd doctor I visited for opinions. I knew after

only talking with him for a few minutes that he was the one.

Take Care! Janet

>

> Hi Janet! Thanks for the reply. Yes i would love info on Dr. Hey.

May

> i ask, what are cages? And i'm sorry if i'm being a little dim but

was

> that revision surgery you had this past october? I'm glad to hear

that

> you are getting better. It's so nice to hear some good news. Yes,

I'm

> in the south...Virginia. It would be nice to go to NC instead of

> land or DC. It would be a relief actually. I'm more familiar

with

> the Raleigh/Durham area. So nice to speak to you and i hope your

days

> get better and better. Thanks again, -Lavender

>

[Guest guest]

Hi Janet,

I'm exploring whether to see Dr. Hey for post-revision problems. He's not too far from where I live, though I plan to consult Dr. Boachie, who did my revision, and to see more than one Dr. Would you mind telling me the names of the other two doctors you considered. Thanks.

Bonnie

[ ] Re: new to forum

Hi Lavender, Yes, my surgery was Oct 13th, 2005. I am recovering nicely, just get tired so easily. Not sure if I can explain this right, but cages are some kind of metal that is used to help keep vertebra apart. Some of my vertebra had curved so that the were touching on one side. He said the cages would give more support in keeping these vertebra apart. I have alot of ?? about my surgery when I go for my visit--need some explanations of some of the things my husband said Dr. Hey told him. Hubby didn't ask ? I would have--don't think he really knew what to ask-he was just glad the surgery went well. I am a nurse so of course I would have ? hubby wouldn't think of. I didn't think of these ? while I was in hospital. Things sort of a blur except when the PT came in to get me up to walk. Standing was very painful at first.Here is the info for Dr. Hey:Dr. Lloyd Hey, MD,MSHey Clinic for Scoliosis and Spine Surgery3404 Wake Forest Road--Suite 203Raleigh, NC 27609Tel#: (919) 790-1717Fax#: (919) 573-9438Website: www.heyclinic.comDr. Hey's e-mail: hey@...He has been wonderful to me and I hope that you will see him for an opinion. He was the 3rd doctor I visited for opinions. I knew after only talking with him for a few minutes that he was the one.Take Care! Janet>> Hi Janet! Thanks for the reply. Yes i would love info on Dr. Hey. May > i ask, what are cages? And i'm sorry if i'm being a little dim but was > that revision surgery you had this past october? I'm glad to hear that > you are getting better. It's so nice to hear some good news. Yes, I'm > in the south...Virginia. It would be nice to go to NC instead of > land or DC. It would be a relief actually. I'm more familiar with > the Raleigh/Durham area. So nice to speak to you and i hope your days > get better and better. Thanks again, -Lavender>

[Guest guest]

Dear Barb,

Welcome to the group, so sorry you need to be among us, but I hope you find help and comfort with us. I know it's hard to hear you need another go around at surgery all these years later. For me I knew something was wrong for years and it took a long while to find a doc to diagnosis my Flatback, but for me the diagnosis was a relief, to know something could be done to help me with the pain and ever increasing trouble walking. I'm now 4 1/2 years out from my last revision with Dr. Kumar in Denver and doing very well.

While I didn't have crankshafting, I had severe stenosis, severe rotation, osteoarthritis and Flatback. I had my original Harrington Rod surgery at 14 in 1973 at University of California, San Francisco hospital. There are a lot of us who had our original surgeries in California, and tons of you guys from the Boston area. Where are you located now? How did you get refered to Dr. Lenke? Many here have had surgery with Dr. Bridwell, both Dr's Lenke and Bridwell were consulted on my case by my doc at a SRS meeting, my doc finds them both to be top notch, and go to guys for an opinion when dealing with complex cases. It's good you are getting to an excellent doc from the get go who knows Flatback, many of us fumble around for years looking for such a doc, such a good thing for you!

I know this all can be overwhelming, but now you are among friends, just take it one step at a time. First the site is full of great educational materials, all about the in's and out's of Flatback and the surgery. The files section is full of great info, so just park yourself at the computer and read. An informed patient can always be the best advocate for themselves. For your first visit with Lenke it's good to bring along a friend or family member too, good to have someone to help keep track of whats said. Bring along a list of questions, mine were formed from my reading, but in the files section there is an excellent list of questions to take to the doc. Know this can be emotional, so preparing and having someone there to help is a good idea, hate to get home and not remember exactly what he said.

I'm holding good thoughts for you and your visit, a good doc is the first step in this journey. Anything we can do to help just ask!

Welcome!

Colorado Springs

[ ] new to forum

hi everyone,i am 35 and had harrington rod and fusion done in boston in 1982. i recently was told i have flatback, severe osteoarthritis, that i crankshafted ? above my rod and need my whole spine reconstructed!wow i thought i just pulled a muscle really bad!i have been blown away reading everyone elses stories, never having known anyone else who had what i had done.i am seeing dr. lenke in st.louis on the 27th. i'm nervous but anxious at the same time. i tried to post one time before so i hope i'm not repeating myself...i did not see my post with the others.anyway i was wondering if there is anyone out there who recently had reconstructive surgery or if anyone is familiar with dr. lenke.my best to all!barb

[Guest guest]

Hi Barb,

Welcome. Just for the sake of clarity: what you are calling reconstructive surgery is generally referred to here as revision surgery. So when you read through the site, realize that the surgery we talk about is the same as has been recommended for you. When I say the same, I don't mean the exact same surgery as every patient is somewhat different, except that we've all (or mostly all) have had prior Harrington Rod surgery for scoliosis. And now, years later, the results of that surgery are Flatback, or the loss of lordosis, (the normal front to back curve) and resulting wear and tear on the lower spine causing all sorts of problems, like degenerative disc disease, arthritis, stenosis, spondylosis, etc., which cause much pain. Hence the need for further surgery. The surgery is very complicated and only a few orthopedists sub-specialize in this surgery. You are lucky to have found one so quickly in Dr. Lenke. Some of us spent an awful lot of time with surgeons who did not understand our situation and did not know what is being done about it and who can do it. As you read through the site, you'll find others besides Dr. Lenke. For starters, there's Dr. Rand in Boston, Dr. Boachie in NYC, Dr. Bendo in NYC, Dr. Kumar in Colorado Springs and several doctors at UCSF in San Francisco. Last but not least on my list, is Dr. Bridwell in St Louis. He and Dr. Lenke are in the same practice.

Good luck to you in your visit with Dr. Lenke. Please let us know what he has to say. And feel free to ask us your questions, or to vent, as the case may be. We are here to help.

Bonnie

[ ] new to forum

hi everyone,i am 35 and had harrington rod and fusion done in boston in 1982. i recently was told i have flatback, severe osteoarthritis, that i crankshafted ? above my rod and need my whole spine reconstructed!wow i thought i just pulled a muscle really bad!i have been blown away reading everyone elses stories, never having known anyone else who had what i had done.i am seeing dr. lenke in st.louis on the 27th. i'm nervous but anxious at the same time. i tried to post one time before so i hope i'm not repeating myself...i did not see my post with the others.anyway i was wondering if there is anyone out there who recently had reconstructive surgery or if anyone is familiar with dr. lenke.my best to all!barb

[Guest guest]

>hi bonnie,

thank you for responding. how did your revision surgery go? did you

have it with dr. bridwell. he is one of the best. thank god for these

dr's who specialize in this! my biggest challenge or fear facing this

surgery is doing it as a wife and mother of 3. when i had the other i

was 11 and fearless! my appologies to lavender i don't know why my

post came up on her thread. i guess i'm not too comp. savvy!

> Hi Barb,

>

> Welcome. Just for the sake of clarity: what you are calling

reconstructive surgery is generally referred to here as revision

surgery. So when you read through the site, realize that the surgery

we talk about is the same as has been recommended for you. When I

say the same, I don't mean the exact same surgery as every patient is

somewhat different, except that we've all (or mostly all) have had

prior Harrington Rod surgery for scoliosis. And now, years later,

the results of that surgery are Flatback, or the loss of lordosis,

(the normal front to back curve) and resulting wear and tear on the

lower spine causing all sorts of problems, like degenerative disc

disease, arthritis, stenosis, spondylosis, etc., which cause much

pain. Hence the need for further surgery. The surgery is very

complicated and only a few orthopedists sub-specialize in this

surgery. You are lucky to have found one so quickly in Dr. Lenke.

Some of us spent an awful lot of time with surgeons who did not

understand our situation and did not know what is being done about it

and who can do it. As you read through the site, you'll find others

besides Dr. Lenke. For starters, there's Dr. Rand in Boston, Dr.

Boachie in NYC, Dr. Bendo in NYC, Dr. Kumar in Colorado Springs and

several doctors at UCSF in San Francisco. Last but not least on my

list, is Dr. Bridwell in St Louis. He and Dr. Lenke are in the same

practice.

>

> Good luck to you in your visit with Dr. Lenke. Please let us know

what he has to say. And feel free to ask us your questions, or to

vent, as the case may be. We are here to help.

>

> Bonnie

> [ ] new to forum

>

>

> hi everyone,

>

> i am 35 and had harrington rod and fusion done in boston in 1982.

i

> recently was told i have flatback, severe osteoarthritis, that i

> crankshafted ? above my rod and need my whole spine reconstructed!

> wow i thought i just pulled a muscle really bad!

> i have been blown away reading everyone elses stories, never

having

> known anyone else who had what i had done.

> i am seeing dr. lenke in st.louis on the 27th. i'm nervous but

anxious

> at the same time. i tried to post one time before so i hope i'm

not

> repeating myself...i did not see my post with the others.

> anyway i was wondering if there is anyone out there who recently

had

> reconstructive surgery or if anyone is familiar with dr. lenke.

> my best to all!

> barb

>

[Guest guest]

>

> hi susan!

thank you so much for your response. i have found it VERY comforting

and also sad finding others like me. i am so happy for you that your

revision surgery has brought you relief. did you have to have more

than one? i feel extremely blessed to have found dr. lenke right

away. and i'm learning that i was very blessed to have had the

surgeon i had 24 years ago also. from reading others stories at this

point where i am others have already had to have numerous surgeries.

> i live in mt.vernon m.o. my husband retired from the coast guard

and we settled here. but i am from m.a.

the hardest part of this is coming to the understanding that i have a

deformity or disease. the way it has always been presented to me or

my understanding was that i HAD a problem but it was fixed, like

setting an arm. was i just blissfully ignorant or were you just as

shocked? again my appologies to lavender i'm not sure how my post

ended up on her thread. i hope i'm doing this right!?

barb

> [ ] new to forum

>

>

> hi everyone,

>

> i am 35 and had harrington rod and fusion done in boston in 1982.

i

> recently was told i have flatback, severe osteoarthritis, that i

> crankshafted ? above my rod and need my whole spine reconstructed!

> wow i thought i just pulled a muscle really bad!

> i have been blown away reading everyone elses stories, never

having

> known anyone else who had what i had done.

> i am seeing dr. lenke in st.louis on the 27th. i'm nervous but

anxious

> at the same time. i tried to post one time before so i hope i'm

not

> repeating myself...i did not see my post with the others.

> anyway i was wondering if there is anyone out there who recently

had

> reconstructive surgery or if anyone is familiar with dr. lenke.

> my best to all!

> barb

>

[Guest guest]

Dear Barb,

Glad you are finding the group to be of help and comfort to you! I too thought I was " healed " after my Harrington Rod surgery all those years ago, but about 11 years afterwards I started having troubles and could find a doc that knew what was wrong. After about fifteen years of searching for an answer to my hip and leg pain, I finally got to Dr. Kumar and got my diagnosis, Flatback, it came as a relief! I have had three surgeries to fix the flatback and stenosis. I first tried decompression surgery to deal with the stenosis and buy me some timebefore I needed to be fused to the sacrum. Alas I only got a year out of that surgery and the pain was to the point that revision was necessary. I had my first revision in jan of 2002, was doing terrific, feeling good till I cracked my Harrington Rod fusion mass above my revision, and since I was in pain and falling to the right I needed a second revision, just dumb luck, no ones fault. Had my second revision in dec 2002, and things couldn't be better, I'm rid of the pain, can walk and stand as much as I like and feel terrific.

What sside of missouri are you on. Mt hubby just got back from working on a computer system out there in Popular Bluff, he goes out to missouri fairly often. At least you are in the same state as Lenke, most of our gals have traveled out there from states away. I too was lucky my doc was in state, Kumar is right in Denver, only a twenty minute drive for me when I was having the surgeries.

I look forward to hearing how your appointment goes, you are in good hands with that practice.

Colorado Springs

[ ] new to forum> > > hi everyone,> > i am 35 and had harrington rod and fusion done in boston in 1982. i > recently was told i have flatback, severe osteoarthritis, that i > crankshafted ? above my rod and need my whole spine reconstructed!> wow i thought i just pulled a muscle really bad!> i have been blown away reading everyone elses stories, never having > known anyone else who had what i had done.> i am seeing dr. lenke in st.louis on the 27th. i'm nervous but anxious > at the same time. i tried to post one time before so i hope i'm not > repeating myself...i did not see my post with the others.> anyway i was wondering if there is anyone out there who recently had > reconstructive surgery or if anyone is familiar with dr. lenke.> my best to all!> barb>

[Guest guest]

Hi Donna!

I am 6-weeks post op too! Where did you have your surgery done?

And was it a one-stage or a two-stage? It's so amazing how many of

us had surgery in July!!

Every surgeon seems to have a different opinion on bracing, and of

course it also matters on exactly what was done during your

surgery. I myself just have an optional, soft-cloth, corset-type of

brace. It has some metal bars through it that give it support, but

it's not much of anything really - especially compared to other

braces I've seen. I don't wear it too much right now.

As far as getting your x-rays posted onto the website here - do you

by chance have them on CD already, or do you have hard copies of the

films? If you have them on CD let us know. Someone here had a

wonderful, easy way of saving the files as .jpg's so that you could

upload them. Just post again and someone can give you more detailed

instructions!

Welcome again, and good luck to you as we move through our

recoveries

>

> Hi,my name is Donna and I am new ,though I have been reading your

> posts for a while.I am six weeks post-op and doing a little

better.I

> am fused from t2 to sacrum ,had cages placed in all of my Lumbar

discs

> when they did the anterior approach,then of course all the rods

and

> screws in the posterior approach.I was told at my second post-op

visit

> I would have to wear the Boston brace for a year because I had

such an

> extensive surgery,anyone else ever been told that?Needless to say

I,

> not too thrilled about it!!I have a question,how do you go about

> getting your xrays onto the computer?I want everyone to know how

much

> you have helped me,I was a wreck before surgery and still am

sometimes

> but when it happens I just go online and read your stuff and it

really

> helps.Thank You,Donna

>

[Guest guest]

Welcome Donna! I was fused from L1 to the sacrum with instrumentation into the pelvis. I have been wearing a soft brace for 3 months and still have to wear it when I go out although not around the house. I have to say that if I had the fusion you have described, I would certainly feel safer wearing a Boston brace at least for 6 months. I'm not sure who in the group has worn one for a year but, even though it is uncomfortable and hot, I wouldn't mind having to wear it for a year with such an extensive fusion.

Peggy

[ ] New to forum

Hi,my name is Donna and I am new ,though I have been reading your posts for a while.I am six weeks post-op and doing a little better.I am fused from t2 to sacrum ,had cages placed in all of my Lumbar discs when they did the anterior approach,then of course all the rods and screws in the posterior approach.I was told at my second post-op visit I would have to wear the Boston brace for a year because I had such an extensive surgery,anyone else ever been told that?Needless to say I, not too thrilled about it!!I have a question,how do you go about getting your xrays onto the computer?I want everyone to know how much you have helped me,I was a wreck before surgery and still am sometimes but when it happens I just go online and read your stuff and it really helps.Thank You,Donna

[Guest guest]

Donna, I just started my 6th week of recovery from ant/post revision surgery on July 23. I have to wear a brace 24 hours/day except when I shower. My brace was custom made for my body. I was told I will have to wear it for 6 months. I'm fused t3 to sacrum with cages and 2 osteotomies. The brace is hot here in the Texas heat, but Fall is just around the corner I had follow up x/rays done today and everything looks good! I'm sure you posted this already, but who did your surgery? MelindaDonna <nursedonnadlct@...> wrote: Hi,my name is Donna and I am new ,though I have been reading your posts for a while.I am six weeks post-op and doing a little better.I am fused from t2 to sacrum ,had cages placed in all of my Lumbar discs when they did the anterior approach,then of course all the rods and screws in the posterior approach.I was told at my second post-op visit I would have to wear the Boston brace for a year because I had such an extensive surgery,anyone else ever been told that?Needless to say I, not too thrilled about it!!I have a question,how do you go about getting your xrays onto the computer?I want everyone to know how much you have helped me,I was a wreck before surgery and still am sometimes but when it happens I just go online and read your stuff and it really helps.Thank You,Donna

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[Guest guest]

Hi Sam, your son seams to have a few problems that need sorting out,umm.but his adrenals could be compromised the adrenals can alter how much urine we produce.and to much may be over production or under.! get a 24 hour salivary test done privately.look in our files for details. when one gland is not functioning it has a knock-on effect to othersso this test may prove fruitful.also an antibodie test TPOab might help to . angel.

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First - I am sorry not to have got back to you sooner but I have had Broadband problems which were only sorted this morning.

Hi Sheila thanks for reply - Marcs GP did request FT3 but the hospital in question (Alder Hey) do not do FT3 they only do TT3. I will ask the GP if she would request that his blood be sent elsewhere as they do for aldosterone for the FT3 to be done. I do not think that his antibodies have been tested. Marc is due at the GP tomorrow so i will request that test also.

Ask your GP to do another blood test but ONLY for Free T3 - the laboratory will probably do the test then. If the TSH is within the normal reference interval and the Free T4 is too, then most laboratories refuse to test Free T3 thinking it unnecessary. See if this works.> > I am no expert, but his T4 is ridiculously low and I don't understand why there is such a difference between the NHS blood results and the urine tests.

i dont understand this either but i am aware that the urine test is over a greater lenght of time and is more sensitive. I have shown the urine results to the hospital consultant who (as i have explained to you), shouted at me and told me not to surf the net for quacks and he couldn,t act on these tests as they are not scientifically sound. He said as far as he was concerned Marcs thyroid is fine.

This idiotic Endoprat needs to be put out to grass and retired from doctoring completely. Tell him, next time he tries anything like this, to give you PROOF that these tests are not scientifically sound, and 'shout' at him that you do not surf the net to look for quacks - you have one sitting in front of you after all - but you have been driven to doing your own research because there is nobody around who seems able to help you.....well - you know what I mean, but I would love to sit in with you and have my say at such idiotic remarks.> Did they increase his cortisone at that time ? The dose he is taking now appears small compared to his adrenal results.

No 7.5mg was his starting dose after 6 months of not treating him. I was told to let the hospital know if he was not significantly better on the hydrocortisone and then they would see Marc to change the dosage but when i spoke to the endocrine nurse he said it would take a lot longer and to wait. I did this and a few weeks back wrote telling the doctor that he was not much better but was told i would see him at the next clinic appointment at end of August.

I had been made aware that anybody taking hydrocortisone would have an almost immediate beneficial effect - I can't understand why they feel he should wait before an increase. Can you telephone the secretary of the clinic and ask to be given the appointment of anybody who cancels?> > What problems is your husband having on T4/T3? If you see any endocrinologist within the NHS, you should check that their specialty is thyroid and not diabetes. Most are diabetes - and know little about thyroid problems sadly.

My husband appears to not be able to convert and is on both T3 and T4 along with armour. The surgeon who removed his thyroid kept reducing his T4 saying he was on too much and my husband was getting progressively worse with shakes and muscle tendon pains and knots and was trying to continue working but the T4 was reduced so much that he was having falls and stumbles but no one would listen to him. He then fell in work the day after being given a last written sickness warning and damaged his arm so badly he is no longer able to do the job and was medically retired. He went to see an NHS doctor privately who gave him the T3 and upped his T4. He is now seeing no doctor at all as he is scared they will stop his T3 and reduce his T4.

I think your husband needs to join our forum in his own right - as I am positive that we will be able to help him. Ask him to join us Sam. > Again, was this urine test done through the NHS? Did you get the 'paper' results of this test. You should always insist on getting these, because we are learning that for a doctor to tell you the results were 'normal' and nothing to worry about - is often far from the truth. We have people here who might be able to tell you whether tests ~ARE normal or not.

I did not get any paper results as i dont think any proper test results were written - just that a comment on his notes said that his first urine of the day was sufficiently concentrated. It wasn't tested any other way and no accompanying blood test was done which i thought was all part of the test which should also go on longer than 10 minutes - but i could be wrong. yes this was done in Alder Hey on the NHS by the endocrine nurse.

There must definitely be clear results either 'paper' or on the doctors computer. Take a pen and paper with you next time and copy these from the doctors computer screen, together with the reference ranges for each test. I don't have any idea how long these test should go on for, but somebody should know. Ask your GP when you see him.> Insist also on getting his electrolytes tested. This is MOST important. Aldosterone is the principal of a group of mineralocorticoids. It helps regulate levels of sodium and potassium in your body-i.e. it helps you retain needed salt, which in turn helps control blood pressure, the distribution of fluids in the body, and the balance of electrolytes in your blood. Does Marc crave salt btw?

Marc does crave salt and we have to watch him carefully as he would pour it on if allowed. ( We use sea salt so a bit harder to just pour on.) I am taking him to the GP tomorrow so will insist on his electrolyes and aldosterone being done along with the FT3. He is thirsty a lot too but strangely we do have to make sure he drinks alot more water than he does. He doesn't drink fizzy drinks at all just water and fruit juice and occassionally milk.

Oh, this is such a POWERFUL symptom of low adrenal reserve. Ask your GP also to test his blood sugar. Let us know as soon as you get these results. > > When aldosterone gets too high, your blood pressure also gets too high and your potassium levels become too low. You can have muscle cramps, muscle weakness, and numbness or tingling in your extremities.> > However, when it gets too low, which can be common in patients with cortisol deficiency, the kidneys will excrete too much salt, and it leads to low blood pressure; low blood volume; a high pulse and/or palpitations, dizziness and or lightheadedness when you stand; fatigue; and a craving for salt. Symptoms of low aldosterone can also include frequent urination (as you mention), sweating, and a feeling of thirst, besides the craving of salt.

we took Marc to Pendle Hill on the weekend as he loves to walk and despite his fatigue he puts in a lot of effort and enjoys it immensely. He does tire and get thirsty but in the past this has been a long time after we have all flagged. However this weekend he asked could we turn back and go home after only 10 minutes as he was so thirsty and tired and his stomach started to ache and he felt like he could throw up. He was fine when he was sitting in the car on way home. This is very concerning to us as it is happening so quickly although in other ways he appears much better but this could be due to his more stable blood sugars?

Pendle Hill is just down the road from me - and the countryside around here is absolutely beautiful. Do get the GP to test to see whether he could have diabetes - but more likely, this is adrenal related. Any chance you can get to see Dr Peatfield again as early as you can with him?> > Another clue that aldosterone may be too low is being on high amounts of HC, such as 30-40 mg, and not getting good results.> > > thanks for reading all this - I am nearly asleep myself...Luv - Sheila

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>> First - I am sorry not to have got back to you sooner but I have had Broadband problems which were only sorted this morning.>

No worries. Sheila can you let me know if i am replying, posting correctly or do i need to be deleting some of the message thread first.> > > Hi Sheila thanks for reply - Marcs GP did request FT3 but the hospital in question (Alder Hey) do not do FT3 they only do TT3. I will ask the GP if she would request that his blood be sent elsewhere as they do for aldosterone for the FT3 to be done. I do not think that his antibodies have been tested. Marc is due at the GP tomorrow so i will request that test also.> > Ask your GP to do another blood test but ONLY for Free T3 - the laboratory will probably do the test then. If the TSH is within the normal reference interval and the Free T4 is too, then most laboratories refuse to test Free T3 thinking it unnecessary. See if this works.

I will try this approach> > > > I am no expert, but his T4 is ridiculously low and I don't understand why there is such a difference between the NHS blood results and the urine tests.> > i dont understand this either but i am aware that the urine test is over a greater lenght of time and is more sensitive. I have shown the urine results to the hospital consultant who (as i have explained to you), shouted at me and told me not to surf the net for quacks and he couldn,t act on these tests as they are not scientifically sound. He said as far as he was concerned Marcs thyroid is fine.> > This idiotic Endoprat needs to be put out to grass and retired from doctoring completely. Tell him, next time he tries anything like this, to give you PROOF that these tests are not scientifically sound, and 'shout' at him that you do not surf the net to look for quacks - you have one sitting in front of you after all - but you have been driven to doing your own research because there is nobody around who seems able to help you.....well - you know what I mean, but I would love to sit in with you and have my say at such idiotic remarks.

LOL . this doctor is not the doctor we should have seen. She is away at the moment and will hopefully be back in time for the next appointment. She is younger and more open and hopefully acepting of the fact that we should all be singing from the same hymn sheet.> > > > Did they increase his cortisone at that time ? The dose he is taking now appears small compared to his adrenal results.> > No 7.5mg was his starting dose after 6 months of not treating him. I was told to let the hospital know if he was not significantly better on the hydrocortisone and then they would see Marc to change the dosage but when i spoke to the endocrine nurse he said it would take a lot longer and to wait. I did this and a few weeks back wrote telling the doctor that he was not much better but was told i would see him at the next clinic appointment at end of August.> > I had been made aware that anybody taking hydrocortisone would have an almost immediate beneficial effect - I can't understand why they feel he should wait before an increase. Can you telephone the secretary of the clinic and ask to be given the appointment of anybody who cancels?

The doctor who put Marc on hydrocortisone was the one who siad it should work immediately but as she is away no one else wants to bother themselves and to be honest i would now rather wait till she returns.> > > > What problems is your husband having on T4/T3? If you see any endocrinologist within the NHS, you should check that their specialty is thyroid and not diabetes. Most are diabetes - and know little about thyroid problems sadly.> > My husband appears to not be able to convert and is on both T3 and T4 along with armour. The surgeon who removed his thyroid kept reducing his T4 saying he was on too much and my husband was getting progressively worse with shakes and muscle tendon pains and knots and was trying to continue working but the T4 was reduced so much that he was having falls and stumbles but no one would listen to him. He then fell in work the day after being given a last written sickness warning and damaged his arm so badly he is no longer able to do the job and was medically retired. He went to see an NHS doctor privately who gave him the T3 and upped his T4. He is now seeing no doctor at all as he is scared they will stop his T3 and reduce his T4. > > I think your husband needs to join our forum in his own right - as I am positive that we will be able to help him. Ask him to join us Sam.

I will ask him, of course, but he doesn,t gel well with the computer and is busy doing a teaching/assesors course to get him back into the workplace but not doing the job he used to do hands on, instead taking a teaching type of role> > > Again, was this urine test done through the NHS? Did you get the 'paper' results of this test. You should always insist on getting these, because we are learning that for a doctor to tell you the results were 'normal' and nothing to worry about - is often far from the truth. We have people here who might be able to tell you whether tests ~ARE normal or not.> > I did not get any paper results as i dont think any proper test results were written - just that a comment on his notes said that his first urine of the day was sufficiently concentrated. It wasn't tested any other way and no accompanying blood test was done which i thought was all part of the test which should also go on longer than 10 minutes - but i could be wrong. yes this was done in Alder Hey on the NHS by the endocrine nurse.> > There must definitely be clear results either 'paper' or on the doctors computer. Take a pen and paper with you next time and copy these from the doctors computer screen, together with the reference ranges for each test. I don't have any idea how long these test should go on for, but somebody should know. Ask your GP when you see him.

will do but with no blood being taken and no measurements i dont think there will be any unless "it looks dark and concentrated sufficiently" is a scientific result.> > > Insist also on getting his electrolytes tested. This is MOST important. Aldosterone is the principal of a group of mineralocorticoids. It helps regulate levels of sodium and potassium in your body-i.e. it helps you retain needed salt, which in turn helps control blood pressure, the distribution of fluids in the body, and the balance of electrolytes in your blood. Does Marc crave salt btw?> > Marc does crave salt and we have to watch him carefully as he would pour it on if allowed. ( We use sea salt so a bit harder to just pour on.) I am taking him to the GP tomorrow so will insist on his electrolyes and aldosterone being done along with the FT3. He is thirsty a lot too but strangely we do have to make sure he drinks alot more water than he does. He doesn't drink fizzy drinks at all just water and fruit juice and occassionally milk. > > Oh, this is such a POWERFUL symptom of low adrenal reserve. Ask your GP also to test his blood sugar. Let us know as soon as you get these results.

will do but i am testing his blood sugars regularly but they have stabilised into the middle to top of normal range noe and sometimes higher. they used to be either below the range or always at the bottom of the range (4-7)> > > > When aldosterone gets too high, your blood pressure also gets too high and your potassium levels become too low. You can have muscle cramps, muscle weakness, and numbness or tingling in your extremities.> > > > However, when it gets too low, which can be common in patients with cortisol deficiency, the kidneys will excrete too much salt, and it leads to low blood pressure; low blood volume; a high pulse and/or palpitations, dizziness and or lightheadedness when you stand; fatigue; and a craving for salt. Symptoms of low aldosterone can also include frequent urination (as you mention), sweating, and a feeling of thirst, besides the craving of salt.> > we took Marc to Pendle Hill on the weekend as he loves to walk and despite his fatigue he puts in a lot of effort and enjoys it immensely. He does tire and get thirsty but in the past this has been a long time after we have all flagged. However this weekend he asked could we turn back and go home after only 10 minutes as he was so thirsty and tired and his stomach started to ache and he felt like he could throw up. He was fine when he was sitting in the car on way home. This is very concerning to us as it is happening so quickly although in other ways he appears much better but this could be due to his more stable blood sugars?> > Pendle Hill is just down the road from me - and the countryside around here is absolutely beautiful. Do get the GP to test to see whether he could have diabetes - but more likely, this is adrenal related. Any chance you can get to see Dr Peatfield again as early as you can with him?

I think diabetes has been ruled out but not insulin resistance. Dr P is very good and has spoken to me since Marc started on the growth hormone. i think he is hoping that the thyroid may right itself after a few more months on the GH. I do not want to start Marc on any thyroid meds myself for fear of not being able to maintain it in the future if needed. at the moment we do not have the funds to see Dr P but hopefully in the future.

You are so right - it is a lovely part of the Northwest and not too far from us either.g good results.> > > > > thanks for reading all this - I am nearly asleep myself...> Luv - Sheila> > > Recent Activity> a.. 12New Members> b.. 3New Photos> c.. 5New Files> Visit Your Group > Health> Memory Loss> > Are you at risk> > for Alzheimers?> > Meditation and> Lovingkindness> > A Group> > to share and learn.> > Biz Resources> Y! Small Business> > Articles, tools,> > forms, and more.> . > > No virus found in this incoming message.> Checked by AVG - http://www.avg.com > Version: 8.0.138 / Virus Database: 270.4.5/1537 - Release Date: 06/07/2008 05:26>

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>

>

> MODERATED TO REMOVE DUPLICATED COPY. I HAVE JUST LEFT THE LATEST

QUESTIONS AND YOUR ANSWERS. - LUV - SHEILA

> ________________________________

>

I am taking him to the GP tomorrow so will insist on his

> electrolyes and aldosterone being done along with the FT3. He is

thirsty a lot too but strangely we do have to make sure he drinks

alot more water than he does. He doesn't drink fizzy drinks at all

just water and fruit juice and occassionally milk.

> >

> > Oh, this is such a POWERFUL symptom of low adrenal reserve. Ask

your

> GP also to test his blood sugar. Let us know as soon as you get

these

> results.

>

> will do but i am testing his blood sugars regularly but they have

> stabilised into the middle to top of normal range noe and sometimes

> higher. they used to be either below the range or always at the

bottom of the range (4-7)

>

> I think diabetes has been ruled out but not insulin resistance.

Dr P is

> very good and has spoken to me since Marc started on the growth

hormone.

> i think he is hoping that the thyroid may right itself after a few

more

> months on the GH. I do not want to start Marc on any thyroid meds

> myself for fear of not being able to maintain it in the future if

> needed. at the moment we do not have the funds to see Dr P but

> hopefully in the future.

>

> You are so right - it is a lovely part of the Northwest and not

too far from us either.

>

> g good results.

Hi Sheila, just a quick update

I took Marc to the GP and she said she has already done an

electrolyte test with sodium and pottassium levels ok - right in the

middle of the range.

She did another request form for T3 and aldosterone which i took to

the head of the lab myself and she assured me both tests have been

dealt with this time and they missed the aldosterone request last

time.

She put the result for T3 in the post the same night which was good

of her. I asked her would the T3 be total T3 or FT3 and apparently

they only do FT3 for research purposes so his result will be TT3 not

much use but they do not think it necessary to do RT3 in a child.

Marc is still not too well and is still fatigued and nauseous.

yesterday he had a horrible headache and vomitted quite a bit. he

is still complaining of being dizzy and " just not right " so i phoned

the endocrine nurse who said he should go back to the GP as it

doesn,t sound like a hormone problem but more like migraine which

you can get in your stomach and head. i have also had Marcs eyes

checked as his eyesight is getting worse qiute quickly of late but

thankfully there is no change there so that is not the problem.

Marc has also had a blocked nose for about three weeks - the doctor

is not sure why this is persisting but it may be hayfever although

his eyes are not streaming or itchy he just has this blocked up nose.

Anyway i will let you know his T3 result when it comes back. I am

just a bit concerned for Marc as he is going to France with his

school next week and i would like to see him being able to fully

enjoy it.

Thanks Sheila

Sam

>