need advice please

[Guest guest]

Will do!

In the meantime, I am on my way out the door right now to pick up some

chicken broth. Do you think I could put veggie soup in the blender and

smooth it out? Or would this not be worth chancing?

Thanks for all your help,

Berta

From:

[mailto: ] On Behalf Of moonshadow.sandy

Sent: Monday, June 09, 2008 11:26 AM

Subject: Re: Need advice please

Berta, Let's see what your doc thinks. I'd also ask hm more about

this meat tenderizer idea. I can't believe he ok's his staff to

advise things like that.

Usually, 1/2 to 1/3 of the fill is enough to get out. I'd suggst

trying 1/3, and hanging around for an hour near the office, sipping

hot liquids and see how it goes. they should go doewn easily. You can

get more out, if needed, but i bet tht will be enough.

Good advice from heather, too, as usual!

Sandy r

> >

> > I had my last fill May 7. I was adjusting to the new level fine

> until

> > Friday. Friday night, about 7:00, I had grilled chicken and

> mushrooms

> > for dinner. I skipped the grilled peppers and tomatoes in an

> effort to

> > avoid irritating anything. At 11:00 I was getting ready for bed

and

> > without any warning whatsoever I vomited. It seemed to be just

> clear

> > liquid with some of the seasoning from the chicken mixed in. No

> food,

> > not slime or saliva. Saturday I did liquids. Saturday night I

> coughed

> > up fluids in my sleep and have been sleeping upright ever since.

> >

> >

> >

> > Yesterday was pure misery. I had horrible heartburn, even before

> eating

> > anything. I did water all day and then in the evening I had some

> > strained cream of mushroom soup. The soup went down, stayed down,

> no

> > problem. I think the warmth actually helped soothe things a bit.

> >

> >

> >

> > This morning I have had several glasses of water. That went well,

> so I

> > tried a glass of milk. It felt like the milk sort of backed up in

> my

> > throat and is sitting there. Some of it came back up in what I

can

> only

> > assume is a " pb " .

> >

> >

> >

> > I called my doctors office to have fill taken out. They will not

> see me

> > until tomorrow and told me in the meantime to put meat tenderizer

in

> > water and drink that. I am afraid this will irritate my obviously

> > already swollen pouch. I told her this and she said it would

> dissolve

> > whatever is in there and I will feel better. It sounds ludicrous

> to me.

> >

> >

> >

> >

> > Berta

> >

> >

> >

> >

[Guest guest]

Well maybe the doc needs a new staff. I've heard of the meat tenderizer thing

as well as papaya enzyme to help something get unstuck. None of it is proven

and none of it makes sense. Stick to Sandy's advice and you should be fine.

Did you have the fill done under fluro? Do you typically swell a lot with

fills. I don't really, but my husband does (both banded). He swells so badly

that he needs to do liquids a couple of days before he moves on to mushier and

then more solid things.

@...: berta@...: Mon, 9 Jun

2008 12:14:45 -0400Subject: RE: Need advice please

Thanks , I think I need a new dr. Need advice pleaseI had my last fill

May 7. I was adjusting to the new level fineuntilFriday. Friday night, about

7:00, I had grilled chicken andmushroomsfor dinner. I skipped the grilled

peppers and tomatoes in aneffort toavoid irritating anything. At 11:00 I was

getting ready for bedandwithout any warning whatsoever I vomited. It seemed to

be justclearliquid with some of the seasoning from the chicken mixed in.

Nofood,not slime or saliva. Saturday I did liquids. Saturday night Icoughedup

fluids in my sleep and have been sleeping upright ever since.Yesterday was pure

misery. I had horrible heartburn, even beforeeatinganything. I did water all day

and then in the evening I hadsomestrained cream of mushroom soup. The soup went

down, stayed down,noproblem. I think the warmth actually helped soothe things a

bit. Thismorning I have had several glasses of water. That went well, so Itried

aglass of milk. It felt like the milk sort of backed up in mythroat andis

sitting there. Some of it came back up in what I can onlyassume is a " pb " . I

called my doctors office to have fill taken out. They will notsee meuntil

tomorrow and told me in the meantime to put meat tenderizerinwater and drink

that. I am afraid this will irritate myobviouslyalready swollen pouch. I told

her this and she said it woulddissolvewhatever is in there and I will feel

better. It sounds ludicrousto me.Berta[Non-text portions of this message have

been removed] __________________________________________________________It's

easy to add contacts from Facebook and other social sites throughWindows

Live Messenger. Learn

how.https://www.invite2messenger.net/im/?source=TXT_EML_WLH_LearnHow[Non-text

portions of this message have been

removed]------------------------------------

[Guest guest]

If you liquify it in the blender it would probably be okay. If it looks too

thick, just add some chicken broth to it to thin it out more. Or you might want

to just wait until after you have some fluid removed to have it just in case.

@...: berta@...: Mon, 9 Jun

2008 12:30:38 -0400Subject: RE: Re: Need advice please

Will do! In the meantime, I am on my way out the door right now to pick up

somechicken broth. Do you think I could put veggie soup in the blender andsmooth

it out? Or would this not be worth chancing? Thanks for all your help,BertaFrom:

[mailto: ] On

Behalf Of moonshadow.sandySent: Monday, June 09, 2008 11:26 AMTo:

@...: Re: Need advice

pleaseBerta, Let's see what your doc thinks. I'd also ask hm more about this

meat tenderizer idea. I can't believe he ok's his staff to advise things like

that. Usually, 1/2 to 1/3 of the fill is enough to get out. I'd suggst trying

1/3, and hanging around for an hour near the office, sipping hot liquids and see

how it goes. they should go doewn easily. You can get more out, if needed, but i

bet tht will be enough. Good advice from heather, too, as usual!Sandy r> >> > I had my last fill May 7. I was adjusting to the new level fine >

until> > Friday. Friday night, about 7:00, I had grilled chicken and >

mushrooms> > for dinner. I skipped the grilled peppers and tomatoes in an >

effort to> > avoid irritating anything. At 11:00 I was getting ready for bed

and> > without any warning whatsoever I vomited. It seemed to be just > clear> >

liquid with some of the seasoning from the chicken mixed in. No > food,> > not

slime or saliva. Saturday I did liquids. Saturday night I > coughed> > up fluids

in my sleep and have been sleeping upright ever since. > > > > > > > > Yesterday

was pure misery. I had horrible heartburn, even before > eating> > anything. I

did water all day and then in the evening I had some> > strained cream of

mushroom soup. The soup went down, stayed down, > no> > problem. I think the

warmth actually helped soothe things a bit. > > > > > > > > This morning I have

had several glasses of water. That went well, > so I> > tried a glass of milk.

It felt like the milk sort of backed up in > my> > throat and is sitting there.

Some of it came back up in what I can > only> > assume is a " pb " . > > > > > > >

> I called my doctors office to have fill taken out. They will not > see me> >

until tomorrow and told me in the meantime to put meat tenderizer in> > water

and drink that. I am afraid this will irritate my obviously> > already swollen

pouch. I told her this and she said it would > dissolve> > whatever is in there

and I will feel better. It sounds ludicrous > to me.> > > > > > > > > > Berta> >

> > > > > >

[Guest guest]

Any thinned soup is fine. blend well to smooth it completely, then

add more broth so it's very thin nd could get thru a straw. you don't

have to USE the straw, but that is the test.

Things like chunky bean and ham will have good protein and fiber, but

for only the day or 2 you'll need liquids, that really doesn't

matter much.

you'll know if it will work! If any trouble, go to thinner things.

get the low-salt broths, as you don't need salt when you're trying to

prevent dehydration. Things like the very high-salt boullion are NOT

good.

sandy r

> > >

> > > I had my last fill May 7. I was adjusting to the new level fine

> > until

> > > Friday. Friday night, about 7:00, I had grilled chicken and

> > mushrooms

> > > for dinner. I skipped the grilled peppers and tomatoes in an

> > effort to

> > > avoid irritating anything. At 11:00 I was getting ready for bed

> and

> > > without any warning whatsoever I vomited. It seemed to be just

> > clear

> > > liquid with some of the seasoning from the chicken mixed in. No

> > food,

> > > not slime or saliva. Saturday I did liquids. Saturday night I

> > coughed

> > > up fluids in my sleep and have been sleeping upright ever

since.

> > >

> > >

> > >

> > > Yesterday was pure misery. I had horrible heartburn, even

before

> > eating

> > > anything. I did water all day and then in the evening I had some

> > > strained cream of mushroom soup. The soup went down, stayed

down,

> > no

> > > problem. I think the warmth actually helped soothe things a

bit.

> > >

> > >

> > >

> > > This morning I have had several glasses of water. That went

well,

> > so I

> > > tried a glass of milk. It felt like the milk sort of backed up

in

> > my

> > > throat and is sitting there. Some of it came back up in what I

> can

> > only

> > > assume is a " pb " .

> > >

> > >

> > >

> > > I called my doctors office to have fill taken out. They will

not

> > see me

> > > until tomorrow and told me in the meantime to put meat

tenderizer

> in

> > > water and drink that. I am afraid this will irritate my

obviously

> > > already swollen pouch. I told her this and she said it would

> > dissolve

> > > whatever is in there and I will feel better. It sounds

ludicrous

> > to me.

> > >

> > >

> > >

> > >

> > > Berta

> > >

> > >

> > >

> > >

[Guest guest]

o.k. . . . it is worse this morning, having trouble sipping water, it

bubbles back up and has started the heartburn all over again. I managed

to sip broth and water (I got a little of the thinned soup down) all

afternoon and evening yesterday, but I must have become dehydrated

anyway, so now on top of everything else, I have a splitting headache.

My appointment to have the fluid removed is at 1:15. Wish me luck!!

Berta

From:

[mailto: ] On Behalf Of moonshadow.sandy

Sent: Monday, June 09, 2008 11:55 AM

Subject: Re: Need advice please

Any thinned soup is fine. blend well to smooth it completely, then

add more broth so it's very thin nd could get thru a straw. you don't

have to USE the straw, but that is the test.

Things like chunky bean and ham will have good protein and fiber, but

for only the day or 2 you'll need liquids, that really doesn't

matter much.

you'll know if it will work! If any trouble, go to thinner things.

get the low-salt broths, as you don't need salt when you're trying to

prevent dehydration. Things like the very high-salt boullion are NOT

good.

sandy r

> > >

> > > I had my last fill May 7. I was adjusting to the new level fine

> > until

> > > Friday. Friday night, about 7:00, I had grilled chicken and

> > mushrooms

> > > for dinner. I skipped the grilled peppers and tomatoes in an

> > effort to

> > > avoid irritating anything. At 11:00 I was getting ready for bed

> and

> > > without any warning whatsoever I vomited. It seemed to be just

> > clear

> > > liquid with some of the seasoning from the chicken mixed in. No

> > food,

> > > not slime or saliva. Saturday I did liquids. Saturday night I

> > coughed

> > > up fluids in my sleep and have been sleeping upright ever

since.

> > >

> > >

> > >

> > > Yesterday was pure misery. I had horrible heartburn, even

before

> > eating

> > > anything. I did water all day and then in the evening I had some

> > > strained cream of mushroom soup. The soup went down, stayed

down,

> > no

> > > problem. I think the warmth actually helped soothe things a

bit.

> > >

> > >

> > >

> > > This morning I have had several glasses of water. That went

well,

> > so I

> > > tried a glass of milk. It felt like the milk sort of backed up

in

> > my

> > > throat and is sitting there. Some of it came back up in what I

> can

> > only

> > > assume is a " pb " .

> > >

> > >

> > >

> > > I called my doctors office to have fill taken out. They will

not

> > see me

> > > until tomorrow and told me in the meantime to put meat

tenderizer

> in

> > > water and drink that. I am afraid this will irritate my

obviously

> > > already swollen pouch. I told her this and she said it would

> > dissolve

> > > whatever is in there and I will feel better. It sounds

ludicrous

> > to me.

> > >

> > >

> > >

> > >

> > > Berta

> > >

> > >

> > >

> > >

[Guest guest]

Yes, I would start again now and you should do fine.

Have a great day!! Darena

need advice please

I did the protocal for about 17 days and had to stop due to a vacation. I didn't gain anything and continued to eat pretty well last few days. So I've been off the hcg for two weeks and would like to start another round. I know I haven't waited the required time, but was wondering if I could start the hcg again so soon. I lost 15lbs the first time and have another 15-20 to go. Any advice would be great. Thanks, Kaila

[Guest guest]

I think you can just continue where you left off. Dont start over with

the load days and all. Just continue from where you were.

>

> I did the protocal for about 17 days and had to stop due to a

vacation. I didn't gain

> anything and continued to eat pretty well last few days. So I've

been off the hcg for two

> weeks and would like to start another round. I know I haven't waited

the required time,

> but was wondering if I could start the hcg again so soon. I lost

15lbs the first time and

> have another 15-20 to go. Any advice would be great. Thanks, Kaila

>

[Guest guest]

"Move to Arkansan in Nov..The nearest HIV. Dr. is an hour away. I am on Medicare so I have to get my son to drive me there. and right now we do not have the money to get to the Dr there."Lyn, This all sounds so terrible. Are there any AIDS service organizations that can inform you?JB

[Guest guest]

Yes, it IS drastic

Dr. Dan

Write to me, directly, if you want to chat about your future.

On Tue, Apr 27, 2010 at 7:08 PM, <fltugger@...> wrote:

>

>

> Hello all!

> I have been taking ARV's for many years, then decided to stop them in late

> January of this year. I had gone on drug holidays before, once for about a

> year, and another time for about a year and a half. After the doing the drug

> holidays and returning for treatment, the doctors I dealt with were amazed

> that my counts didn't change very much during the holidays. My philosophy

> has always been that the ARV's can be of benefit to people with HIV (and

> lifesaving in severe cases), but know of the documented toxicity of the

> drugs, therefore some people benefitting from drug holidays.

>

> Well, I have been on continuous ARV therapy for about 7 years, until I

> stopped this January. My viral load during that whole period of time was

> always undetectable, and CD4 fluctuated between 500-1090. It was usually in

> the 600-800 range. The count of 1090 was from Dec. 2009, and although the

> validity of CD4 counts is questionable, you can't help but be happy about

> it. I thought the high CD4 was mostly due to the supplements I take -

> Selenium, Q10, Alpha Lipoic Acid, Chlorella and Spirulina. Well today I got

> my results from last week's test and CD4 is 352 (hasn't been that low in

> many years), and viral load is now 165,000 (never been above 50,000). Do you

> believe this is just my body's reaction to stopping the ARV's, or should I

> be worried about these counts? I have heard that your counts can drop

> somewhat after stopping the meds, but isn't this a little drastic?

>

> Sorry for the length of this post, but would really appreciate any and all

> opinions.

>

> Peace,

>

>

>

>

>

[Guest guest]

Yes, it IS drastic

Dr. Dan

Write to me, directly, if you want to chat about your future.

On Tue, Apr 27, 2010 at 7:08 PM, <fltugger@...> wrote:

>

>

> Hello all!

> I have been taking ARV's for many years, then decided to stop them in late

> January of this year. I had gone on drug holidays before, once for about a

> year, and another time for about a year and a half. After the doing the drug

> holidays and returning for treatment, the doctors I dealt with were amazed

> that my counts didn't change very much during the holidays. My philosophy

> has always been that the ARV's can be of benefit to people with HIV (and

> lifesaving in severe cases), but know of the documented toxicity of the

> drugs, therefore some people benefitting from drug holidays.

>

> Well, I have been on continuous ARV therapy for about 7 years, until I

> stopped this January. My viral load during that whole period of time was

> always undetectable, and CD4 fluctuated between 500-1090. It was usually in

> the 600-800 range. The count of 1090 was from Dec. 2009, and although the

> validity of CD4 counts is questionable, you can't help but be happy about

> it. I thought the high CD4 was mostly due to the supplements I take -

> Selenium, Q10, Alpha Lipoic Acid, Chlorella and Spirulina. Well today I got

> my results from last week's test and CD4 is 352 (hasn't been that low in

> many years), and viral load is now 165,000 (never been above 50,000). Do you

> believe this is just my body's reaction to stopping the ARV's, or should I

> be worried about these counts? I have heard that your counts can drop

> somewhat after stopping the meds, but isn't this a little drastic?

>

> Sorry for the length of this post, but would really appreciate any and all

> opinions.

>

> Peace,

>

>

>

>

>

[Guest guest]

I wouldn't say your viral load had a drastic change. My friend had an

undetectable viral load. After 5 weeks off the meds, his viral load got up to

730,000 but his CD4 remained the same. Go figure!

From: <fltugger@...>

Subject: Need advice please

cures for AIDS

Date: Tuesday, April 27, 2010, 7:08 PM

 

Hello all!

I have been taking ARV's for many years, then decided to stop them in late

January of this year. I had gone on drug holidays before, once for about a year,

and another time for about a year and a half. After the doing the drug holidays

and returning for treatment, the doctors I dealt with were amazed that my counts

didn't change very much during the holidays. My philosophy has always been that

the ARV's can be of benefit to people with HIV (and lifesaving in severe cases),

but know of the documented toxicity of the drugs, therefore some people

benefitting from drug holidays.

Well, I have been on continuous ARV therapy for about 7 years, until I stopped

this January. My viral load during that whole period of time was always

undetectable, and CD4 fluctuated between 500-1090. It was usually in the 600-800

range. The count of 1090 was from Dec. 2009, and although the validity of CD4

counts is questionable, you can't help but be happy about it. I thought the high

CD4 was mostly due to the supplements I take - Selenium, Q10, Alpha Lipoic Acid,

Chlorella and Spirulina. Well today I got my results from last week's test and

CD4 is 352 (hasn't been that low in many years), and viral load is now 165,000

(never been above 50,000). Do you believe this is just my body's reaction to

stopping the ARV's, or should I be worried about these counts? I have heard that

your counts can drop somewhat after stopping the meds, but isn't this a little

drastic?

Sorry for the length of this post, but would really appreciate any and all

opinions.

Peace,

[Guest guest]

We must remember when people use the term undetectable they mean undetectable

within the blood (it like a half bitten carrot dangling on a string) as many of

you know HIV/AIDS still hide in the gut.

cures for AIDS

From: hsanches1990@...

Date: Wed, 28 Apr 2010 07:39:03 -0700

Subject: Re: Need advice please

I wouldn't say your viral load had a drastic change. My friend had an

undetectable viral load. After 5 weeks off the meds, his viral load got up to

730,000 but his CD4 remained the same. Go figure!

From: <fltugger@...>

Subject: Need advice please

cures for AIDS

Date: Tuesday, April 27, 2010, 7:08 PM

Hello all!

I have been taking ARV's for many years, then decided to stop them in late

January of this year. I had gone on drug holidays before, once for about a year,

and another time for about a year and a half. After the doing the drug holidays

and returning for treatment, the doctors I dealt with were amazed that my counts

didn't change very much during the holidays. My philosophy has always been that

the ARV's can be of benefit to people with HIV (and lifesaving in severe cases),

but know of the documented toxicity of the drugs, therefore some people

benefitting from drug holidays.

Well, I have been on continuous ARV therapy for about 7 years, until I stopped

this January. My viral load during that whole period of time was always

undetectable, and CD4 fluctuated between 500-1090. It was usually in the 600-800

range. The count of 1090 was from Dec. 2009, and although the validity of CD4

counts is questionable, you can't help but be happy about it. I thought the high

CD4 was mostly due to the supplements I take - Selenium, Q10, Alpha Lipoic Acid,

Chlorella and Spirulina. Well today I got my results from last week's test and

CD4 is 352 (hasn't been that low in many years), and viral load is now 165,000

(never been above 50,000). Do you believe this is just my body's reaction to

stopping the ARV's, or should I be worried about these counts? I have heard that

your counts can drop somewhat after stopping the meds, but isn't this a little

drastic?

Sorry for the length of this post, but would really appreciate any and all

opinions.

Peace,

[Guest guest]

We must remember when people use the term undetectable they mean undetectable

within the blood (it like a half bitten carrot dangling on a string) as many of

you know HIV/AIDS still hide in the gut.

cures for AIDS

From: hsanches1990@...

Date: Wed, 28 Apr 2010 07:39:03 -0700

Subject: Re: Need advice please

I wouldn't say your viral load had a drastic change. My friend had an

undetectable viral load. After 5 weeks off the meds, his viral load got up to

730,000 but his CD4 remained the same. Go figure!

From: <fltugger@...>

Subject: Need advice please

cures for AIDS

Date: Tuesday, April 27, 2010, 7:08 PM

Hello all!

I have been taking ARV's for many years, then decided to stop them in late

January of this year. I had gone on drug holidays before, once for about a year,

and another time for about a year and a half. After the doing the drug holidays

and returning for treatment, the doctors I dealt with were amazed that my counts

didn't change very much during the holidays. My philosophy has always been that

the ARV's can be of benefit to people with HIV (and lifesaving in severe cases),

but know of the documented toxicity of the drugs, therefore some people

benefitting from drug holidays.

Well, I have been on continuous ARV therapy for about 7 years, until I stopped

this January. My viral load during that whole period of time was always

undetectable, and CD4 fluctuated between 500-1090. It was usually in the 600-800

range. The count of 1090 was from Dec. 2009, and although the validity of CD4

counts is questionable, you can't help but be happy about it. I thought the high

CD4 was mostly due to the supplements I take - Selenium, Q10, Alpha Lipoic Acid,

Chlorella and Spirulina. Well today I got my results from last week's test and

CD4 is 352 (hasn't been that low in many years), and viral load is now 165,000

(never been above 50,000). Do you believe this is just my body's reaction to

stopping the ARV's, or should I be worried about these counts? I have heard that

your counts can drop somewhat after stopping the meds, but isn't this a little

drastic?

Sorry for the length of this post, but would really appreciate any and all

opinions.

Peace,

[Guest guest]

Hi my name is and I'm new here, was hoping I could ask some questions or

get some advice on what to do and the best direction to take. I had scholiosis

surgery in 1981 when I was 13, I have never had any problems up until I turned

40, I ignorned it for about 3 years but the pain has gotten worse, on most days

it is hard for me to walk for very long or sit or stand. After several tests

they told me I had degenative disc issues that comes from the Harrington rod

that could not have been forseen in the 80's. My doctor sent me to a pain

management doctor who only wants to give me pills and a shot once in a while. I

do not want to be on pain pills for a number of reasons and the SI injections

aren't working real well, I have expressed this with my pain management doc. He

told me to come back when it gets real bad, the pain is real bad now but I don't

want to go back to him. I would like for whatever is wrong to be fixed. Is this

unheard of or something cause I've read several people in the same shape. What

could I be doing to make my sitution better? I use to be active, now I'm always

telling people " I can't cause my back hurts " it is very depressing to me. I have

also done physical therepy. I don't know what to do I'm just tired of being

tired. Thank you in advance for any information, its nice to know I'm not

alone...thanks for listening

[Guest guest]

, I am in your exact position. Pain management does not work and you want it fixed. I'm deciding whether to go all out with the complete marathon surgery of 11 hours and a year recovery or do it in stages....I will probably do it in stages...and do it with a local doctor who does not have a ton of flatback surgeries under his belt but is very familar with it all. Pamela

From: sabrinastrickland@...Date: Fri, 28 Jan 2011 05:47:25 +0000Subject: [ ] need advice please

Hi my name is and I'm new here, was hoping I could ask some questions or get some advice on what to do and the best direction to take. I had scholiosis surgery in 1981 when I was 13, I have never had any problems up until I turned 40, I ignorned it for about 3 years but the pain has gotten worse, on most days it is hard for me to walk for very long or sit or stand. After several tests they told me I had degenative disc issues that comes from the Harrington rod that could not have been forseen in the 80's. My doctor sent me to a pain management doctor who only wants to give me pills and a shot once in a while. I do not want to be on pain pills for a number of reasons and the SI injections aren't working real well, I have expressed this with my pain management doc. He told me to come back when it gets real bad, the pain is real bad now but I don't want to go back to him. I would like for whatever is wrong to be fixed. Is this unheard of or something cause I've read several people in the same shape. What could I be doing to make my sitution better? I use to be active, now I'm always telling people "I can't cause my back hurts" it is very depressing to me. I have also done physical therepy. I don't know what to do I'm just tired of being tired. Thank you in advance for any information, its nice to know I'm not alone...thanks for listening

[Guest guest]

,

 

Welcome to the group, and yes you are not alone in this.

 

Next step is usually consults. Do let us know what area you are at, and we could suggest some doc's for opinions. Many buy some time with PT and med's or injections, but usually it gets to the point where surgical intervention is necessary.

 

What levels are fused on you, and who did that surgery? Where are you located and who have you seen about your current problems? If you go to the Scoliosis Research Society page  www.srs.org, they have a doc locator there by city, state, just look for doc's with Aging spine in their description. Also regionally we know of doc's that deal with patients like us often, and have proven track records. This is very specialized surgery, and experience counts.

 

So being here is helpful because you get to see other patients like yourself at various stages of the process, those looking for diagnosis and a doc, those in the run up to surgery, those just after surgery and recovering, those who for various reasons are coping with Flatback till either they can have surgery, or aren't ready for it, and those like me who are years away from my sucessful revision. I'm 8 years out from my last revision and am doing very well, rid of the pain, and back at life.

 

So, please write back and let us know more about you, and hopefully we can be of help, and welcome to the group, we are always sorry that you need to be here, but glad to have you among us, afterall we have been right where you are and get it.

 

Colorado Springs

On Fri, Jan 28, 2011 at 7:57 AM, Pamela Hanley <campbetty@...> wrote:

 

, I am in your exact position. Pain management does not work and you want it fixed. I'm deciding whether to go all out with the complete marathon surgery of 11 hours and a year recovery or do it in stages....I will probably do it in stages...and do it with a local doctor who does not have a ton of flatback surgeries under his belt but is very familar with it all. 

Pamela 

From: sabrinastrickland@...Date: Fri, 28 Jan 2011 05:47:25 +0000

Subject: [ ] need advice please  

Hi my name is and I'm new here, was hoping I could ask some questions or get some advice on what to do and the best direction to take. I had scholiosis surgery in 1981 when I was 13, I have never had any problems up until I turned 40, I ignorned it for about 3 years but the pain has gotten worse, on most days it is hard for me to walk for very long or sit or stand. After several tests they told me I had degenative disc issues that comes from the Harrington rod that could not have been forseen in the 80's. My doctor sent me to a pain management doctor who only wants to give me pills and a shot once in a while. I do not want to be on pain pills for a number of reasons and the SI injections aren't working real well, I have expressed this with my pain management doc. He told me to come back when it gets real bad, the pain is real bad now but I don't want to go back to him. I would like for whatever is wrong to be fixed. Is this unheard of or something cause I've read several people in the same shape. What could I be doing to make my sitution better? I use to be active, now I'm always telling people " I can't cause my back hurts " it is very depressing to me. I have also done physical therepy. I don't know what to do I'm just tired of being tired. Thank you in advance for any information, its nice to know I'm not alone...thanks for listening

[Guest guest]

Hi Pamela, thanks for responding, what is the marathon surgery you are talking about? The only thing they offered me was to fix my discs but said it would give me an "old lady walk" and the pain might not go away. As far as the "old lady walk" I feel like I already have that, my upper torso seems to pull to the front. But I would like to hear more about this surgery please....thanks

From: Pamela Hanley <campbetty@...>Subject: RE: [ ] need advice please Date: Friday, January 28, 2011, 2:57 PM

, I am in your exact position. Pain management does not work and you want it fixed. I'm deciding whether to go all out with the complete marathon surgery of 11 hours and a year recovery or do it in stages....I will probably do it in stages...and do it with a local doctor who does not have a ton of flatback surgeries under his belt but is very familar with it all. Pamela

From: sabrinastrickland@...Date: Fri, 28 Jan 2011 05:47:25 +0000Subject: [ ] need advice please

Hi my name is and I'm new here, was hoping I could ask some questions or get some advice on what to do and the best direction to take. I had scholiosis surgery in 1981 when I was 13, I have never had any problems up until I turned 40, I ignorned it for about 3 years but the pain has gotten worse, on most days it is hard for me to walk for very long or sit or stand. After several tests they told me I had degenative disc issues that comes from the Harrington rod that could not have been forseen in the 80's. My doctor sent me to a pain management doctor who only wants to give me pills and a shot once in a while. I do not want to be on pain pills for a number of reasons and the SI injections aren't working real well, I have expressed this with my pain management doc. He told me to come back when it gets real bad, the pain is real bad now but I don't want to go back to him. I would like for whatever is wrong to be

fixed. Is this unheard of or something cause I've read several people in the same shape. What could I be doing to make my sitution better? I use to be active, now I'm always telling people "I can't cause my back hurts" it is very depressing to me. I have also done physical therepy. I don't know what to do I'm just tired of being tired. Thank you in advance for any information, its nice to know I'm not alone...thanks for listening

[Guest guest]

this is the 360 degree surgery where they go in the front and to then to the back all in one shot....11 hour surgery. They put in the disc cages and then they ostomey wedge the lumbar vertebrae region to put a sway in your lower back...sorry, don't know all the technical lingo. Pamela

From: sabrinastrickland@...Date: Fri, 28 Jan 2011 11:48:02 -0800Subject: RE: [ ] need advice please

Hi Pamela, thanks for responding, what is the marathon surgery you are talking about? The only thing they offered me was to fix my discs but said it would give me an "old lady walk" and the pain might not go away. As far as the "old lady walk" I feel like I already have that, my upper torso seems to pull to the front. But I would like to hear more about this surgery please....thanks

From: Pamela Hanley <campbetty@...>Subject: RE: [ ] need advice please Date: Friday, January 28, 2011, 2:57 PM

, I am in your exact position. Pain management does not work and you want it fixed. I'm deciding whether to go all out with the complete marathon surgery of 11 hours and a year recovery or do it in stages....I will probably do it in stages...and do it with a local doctor who does not have a ton of flatback surgeries under his belt but is very familar with it all. Pamela

From: sabrinastrickland@...Date: Fri, 28 Jan 2011 05:47:25 +0000Subject: [ ] need advice please

Hi my name is and I'm new here, was hoping I could ask some questions or get some advice on what to do and the best direction to take. I had scholiosis surgery in 1981 when I was 13, I have never had any problems up until I turned 40, I ignorned it for about 3 years but the pain has gotten worse, on most days it is hard for me to walk for very long or sit or stand. After several tests they told me I had degenative disc issues that comes from the Harrington rod that could not have been forseen in the 80's. My doctor sent me to a pain management doctor who only wants to give me pills and a shot once in a while. I do not want to be on pain pills for a number of reasons and the SI injections aren't working real well, I have expressed this with my pain management doc. He told me to come back when it gets real bad, the pain is real bad now but I don't want to go back to him. I would like for whatever is wrong to be fixed. Is this unheard of or something cause I've read several people in the same shape. What could I be doing to make my sitution better? I use to be active, now I'm always telling people "I can't cause my back hurts" it is very depressing to me. I have also done physical therepy. I don't know what to do I'm just tired of being tired. Thank you in advance for any information, its nice to know I'm not alone...thanks for listening

[Guest guest]

,

Your situation sounds familiar to mine. Same ages and everything. I eventually chose revision and had mine done in Amarillo, Tx with Dr. LaGrone. I will be 4 years post in July. Of course, revision is a big decision and I recommend you get more than one opinion. Let me know if you have any questions.

Melinda Malone

From: sabrinastrickland <sabrinastrickland@...>Subject: [ ] need advice please Date: Thursday, January 27, 2011, 11:47 PM

Hi my name is and I'm new here, was hoping I could ask some questions or get some advice on what to do and the best direction to take. I had scholiosis surgery in 1981 when I was 13, I have never had any problems up until I turned 40, I ignorned it for about 3 years but the pain has gotten worse, on most days it is hard for me to walk for very long or sit or stand. After several tests they told me I had degenative disc issues that comes from the Harrington rod that could not have been forseen in the 80's. My doctor sent me to a pain management doctor who only wants to give me pills and a shot once in a while. I do not want to be on pain pills for a number of reasons and the SI injections aren't working real well, I have expressed this with my pain management doc. He told me to come back when it gets real bad, the pain is real bad now but I don't want to go back to him. I would like for whatever is wrong to be fixed. Is this unheard of or

something cause I've read several people in the same shape. What could I be doing to make my sitution better? I use to be active, now I'm always telling people "I can't cause my back hurts" it is very depressing to me. I have also done physical therepy. I don't know what to do I'm just tired of being tired. Thank you in advance for any information, its nice to know I'm not alone...thanks for listening

[Guest guest]

Can someone who has had revision confirm or deny that it changes the way you walk? Like an old lady I think was said?Pamela

From: melmalone@...Date: Fri, 28 Jan 2011 12:16:36 -0800Subject: Re: [ ] need advice please

,

Your situation sounds familiar to mine. Same ages and everything. I eventually chose revision and had mine done in Amarillo, Tx with Dr. LaGrone. I will be 4 years post in July. Of course, revision is a big decision and I recommend you get more than one opinion. Let me know if you have any questions.

Melinda Malone

From: sabrinastrickland <sabrinastrickland@...>Subject: [ ] need advice please Date: Thursday, January 27, 2011, 11:47 PM

Hi my name is and I'm new here, was hoping I could ask some questions or get some advice on what to do and the best direction to take. I had scholiosis surgery in 1981 when I was 13, I have never had any problems up until I turned 40, I ignorned it for about 3 years but the pain has gotten worse, on most days it is hard for me to walk for very long or sit or stand. After several tests they told me I had degenative disc issues that comes from the Harrington rod that could not have been forseen in the 80's. My doctor sent me to a pain management doctor who only wants to give me pills and a shot once in a while. I do not want to be on pain pills for a number of reasons and the SI injections aren't working real well, I have expressed this with my pain management doc. He told me to come back when it gets real bad, the pain is real bad now but I don't want to go back to him. I would like for whatever is wrong to be fixed. Is this unheard of or something cause I've read several people in the same shape. What could I be doing to make my sitution better? I use to be active, now I'm always telling people "I can't cause my back hurts" it is very depressing to me. I have also done physical therepy. I don't know what to do I'm just tired of being tired. Thank you in advance for any information, its nice to know I'm not alone...thanks for listening

[Guest guest]

I walk more upright since my revision in 2007.PeggySent from my Verizon Wireless BlackBerryFrom: Pamela Hanley <campbetty@...>Sender: Date: Fri, 28 Jan 2011 20:22:37 +0000< >Reply Subject: RE: [ ] need advice please Can someone who has had revision confirm or deny that it changes the way you walk? Like an old lady I think was said?Pamela From: melmalone@...Date: Fri, 28 Jan 2011 12:16:36 -0800Subject: Re: [ ] need advice please , Your situation sounds familiar to mine. Same ages and everything. I eventually chose revision and had mine done in Amarillo, Tx with Dr. LaGrone. I will be 4 years post in July. Of course, revision is a big decision and I recommend you get more than one opinion. Let me know if you have any questions. Melinda Malone From: sabrinastrickland <sabrinastrickland@...>Subject: [ ] need advice please Date: Thursday, January 27, 2011, 11:47 PM Hi my name is and I'm new here, was hoping I could ask some questions or get some advice on what to do and the best direction to take. I had scholiosis surgery in 1981 when I was 13, I have never had any problems up until I turned 40, I ignorned it for about 3 years but the pain has gotten worse, on most days it is hard for me to walk for very long or sit or stand. After several tests they told me I had degenative disc issues that comes from the Harrington rod that could not have been forseen in the 80's. My doctor sent me to a pain management doctor who only wants to give me pills and a shot once in a while. I do not want to be on pain pills for a number of reasons and the SI injections aren't working real well, I have expressed this with my pain management doc. He told me to come back when it gets real bad, the pain is real bad now but I don't want to go back to him. I would like for whatever is wrong to be fixed. Is this unheard of or something cause I've read several people in the same shape. What could I be doing to make my sitution better? I use to be active, now I'm always telling people "I can't cause my back hurts" it is very depressing to me. I have also done physical therepy. I don't know what to do I'm just tired of being tired. Thank you in advance for any information, its nice to know I'm not alone...thanks for listening

[Guest guest]

Cam,

Thank you for that reality check....so scared I am going to trade in less pain for all sorts of unpleasantries...like even more scars, COMPLETE lack of any torso movement, instant menapause ( I am 50 and still regular with periods) and a full year of recovery when I am just starting a new love relationship.Pamela

From: cammaltby@...Date: Fri, 28 Jan 2011 20:36:44 +0000Subject: [ ] Re: need advice please

Pamela,If someone is telling you that they will leave you with an "old lady walk" following revision you might want to seek another, or several opinions. I have never heard that mentioned and have had the pleasure of meeting many post-op flatback patients at our gatherings in Boston, and our two retreats. The only people that walked like an old lady were those that had not had surgery yet, or those that had failed revision...which is a possibility....just ask Kathy in CA.There may be some research suggesting you be told that your stride may be a bit shorter...although my recollection without going back and looking at the research is that it is not really all that measurable.That said, there are differences in the way one moves with such a long fusion, as well as the permanant lordosis. As DrRand explained it...sitting is a little unusual with this much lordosis....(although one gets used to it) but they must make a little bit of a compromise. So they basically chose a posture that is most effective for walking, but will permit sitting. Make sense?When I first was doing all the long walks following revision I felt very stiff and unnatural...and probably everything was very shortend from all the laying around/lack of physical activity prior to revision. Over time that changed, and I would say that my walk is comparable to any of my unfused friends. The only differences are that I really dont like to walk fast...I feel too "torqued" or something. And I much prefer walking on soft surfaces to asphalt or pavement.Take Care, Cam

[Guest guest]

Kate, the forum I mentioned is the National Scoliosis Foundation forum. There's different categories to post in, and there's one about doctors that others have used. Here's the link: http://www.scoliosis.org/forum/index.php?Good luck. Felicia Kramerhttp://anotherbrightidea.etsy.comwww.feliciakramer.blogspot.com

[Guest guest]

Pamela,When I had my evaluation with Dr. Lenke, I was offered two different dates. The first was a one-day surgery of 10-12 hours, but if it took longer than expected, they would stop and continue on another day. The other date was a month sooner and was a two-day surgery with a video tutorial. Since there was a possibility that the one-day surgery would become two, I just opted for the earlier two-day surgery. And I teased Dr. Lenke that my reasoning was that he will have a camera on him so he's not about to screw anything up - no "oops" allowed. He promised he would be on his best behavior! He said his hospital is the only one doing tutorials of this type, where the medical personnel watching are allowed to ask questions during the surgery, and that the osteotomy

procedure is the one they are most interested in seeing. I have had four fusion surgeries already. I am currently fused from T4 to the sacrum, with a gap in the hardware from T10 to the lumbar which a previous surgeon removed and did not replace during my third surgery. (BTW, Dr. Lenke was adamant that he would NEVER have left that gap, even though I was supposedly completely fused. I was just as upset when I saw my xrays post-op!) Dr. Lenke said I have significant kyphosis above my fusion, so he will fuse from T4 to T1. He will examine my thoracic hardware and may reinforce it if necessary. Then he will start at T10 and redo my entire lumbar area to the sacrum, with an osteotomy at L3. Generally speaking, Dr. will remove any previous hardware during the first day. On the second day he will do the osteotomy and insert the new hardware. (When I asked what I would be like on the in-between day he said they might try to get

me on my feet for a minute. Yikes!!)We all have to make the surgery decision for ourselves. I have people close to me who have known about their various medical issues for many years and chose not to do anything about them. Now they are at the ages where surgery would be much more difficult and perhaps not even advisable, and they are suffering with pain and limited mobility every day of their lives. Personally, I choose to do whatever is available to me so that I don't end up that way. One of my favorite quotes is by Jack Kerouac: "I promise I shall never give up and that I'll die yelling and laughing." My sentiments exactly!Sorry for this long post. Hope it helps. Felicia Kramerhttp://anotherbrightidea.etsy.comwww.feliciakramer.blogspot.com

[Guest guest]

Thanks Felicia. Your Dr Lenke sounds qualified...glad you are in good hands nd thx for the long response. I think I would rather 2 shorter surgeries than one long....sounds weird huh? Maybe I'll change my mind. I'm either going with a local Dr Seybold who does 2-3 per year or I will go into NYC for Dr Bendo which is a major inconvenience considering I am single and have 2 dogs...a Great Dane and a Pomeranian. Waiting until spring to make the first appointment and then schedule the dreaded deed. It's not surgery I fear so much, it is being soooo vulnerable after.

Pamela

From: feliciakramer4@...Date: Fri, 4 Feb 2011 05:55:58 -0800Subject: [ ] Re: Need Advice Please

Pamela,When I had my evaluation with Dr. Lenke, I was offered two different dates. The first was a one-day surgery of 10-12 hours, but if it took longer than expected, they would stop and continue on another day. The other date was a month sooner and was a two-day surgery with a video tutorial. Since there was a possibility that the one-day surgery would become two, I just opted for the earlier two-day surgery. And I teased Dr. Lenke that my reasoning was that he will have a camera on him so he's not about to screw anything up - no "oops" allowed. He promised he would be on his best behavior! He said his hospital is the only one doing tutorials of this type, where the medical personnel watching are allowed to ask questions during the surgery, and that the osteotomy procedure is the one they are most interested in seeing. I have had four fusion surgeries already. I am currently fused from T4 to the sacrum, with a gap in the hardware from T10 to the lumbar which a previous surgeon removed and did not replace during my third surgery. (BTW, Dr. Lenke was adamant that he would NEVER have left that gap, even though I was supposedly completely fused. I was just as upset when I saw my xrays post-op!) Dr. Lenke said I have significant kyphosis above my fusion, so he will fuse from T4 to T1. He will examine my thoracic hardware and may reinforce it if necessary. Then he will start at T10 and redo my entire lumbar area to the sacrum, with an osteotomy at L3. Generally speaking, Dr. will remove any previous hardware during the first day. On the second day he will do the osteotomy and insert the new hardware. (When I asked what I would be like on the in-between day he said they might try to get me on my feet for a minute. Yikes!!)We all have to make the surgery decision for ourselves. I have people close to me who have known about their various medical issues for many years and chose not to do anything about them. Now they are at the ages where surgery would be much more difficult and perhaps not even advisable, and they are suffering with pain and limited mobility every day of their lives. Personally, I choose to do whatever is available to me so that I don't end up that way. One of my favorite quotes is by Jack Kerouac: "I promise I shall never give up and that I'll die yelling and laughing." My sentiments exactly!Sorry for this long post. Hope it helps.

Felicia Kramer

http://anotherbrightidea.etsy.com

www.feliciakramer.blogspot.com