Support

[Guest guest]

---,

I had surgery with Rand almost six months ago. It is tough surgery. I

do believe Rand is correct that if you leave things at counter level

for your partner she will be fine. Everybody is different so you'll

have to see but it worked for me. I went to my sisters house after 2

eight hour surgeries at NEBH, I went in Jan 13 and came home Feb2. I

was able to ambulate up and down the stairs with a cane.

I know this is scary for all involved. Somehow, with supports from

forums , you get through it. I am six months post op , back to work

caring for my four children and even spent 12 hours in Hershey Park

recently...walking with my children, not riding the rides!!!

Best of luck,,it is hard but you can be a great support to her.

,PA

In , " beltanegrrl "

<beltanegrrl@...> wrote:

>

> Hello Everyone!

>

> Well, I joined this group becuase my partner of 5 years is getting

> ready to have Revision surgery with Dr Rand in Boston, MA and we

> both joined to get support and information in what she was about to

> go through.

>

> We moved up here from Florida almost two years ago. She has quit

> smoking, seen Dr Rand a few times, gone through a mylegram, and

> other tests and she set a surgery date with Dr Rand for October

> 10th. Since then, it has been a rollercoaster ride to say the

least.

>

> She has been up and down so much. It was like everything she was

> going through (pain, dr appts, etc) has been surreal and when she

> got the letter in the mail from his office the other day confirming

> everything, she broke down and emotionally lost it. It was like

that

> letter made it all real in her mind she was really going through

> this all over again. (Her first Harrington Rod surgery was in 1979)

>

> It has been a long hard road on both of us, and sometimes she feels

> so alone because I just cant understand it all and A LOT of times I

> feel alone because I dont understand it all and I dont know what I

> can do to help her. I will always be there to listen, hold her

hand,

> rub her back and do what ever she needs me to do. But there have

> been many MANY times that I cry my whole way to work (a 20 minute

> ride) because I feel like I cant do enough and no one understands

> what I am going through being there but feeling like my hands are

> tied most of the time.

>

> I know most of you are going through what she is and some may

> actually be in worse shape then she is. Her surgery is going to be

> done in 1 12-15 hour surgery from L4-S1 with Pelvic Implants. We

> have 1 last meeting with Rand at the end of August and then her

> prescreening on Sept 19th.

>

> Anyway, I guess what my issues are, is I am wondering what else we

> can do to make her more comfortable. We went to his fusion class

> (which was just bad for her because she was the worst case scenario

> and we both could see everyone looking at her like she was walking

> to her death sentence). We have a lot of questions to ask him and

> the prescreening people. One thing I was wondering, Rand's response

> about me needing to be home with her after surgery was that all I

> have to do is leave everything on counter level before I go to

work.

> Can someone answer me that has been through this HOW REALISTIC IS

> THAT??? (Oh, and he also stated that she will be able to walk up

the

> flight of stairs to our bedrooms or should we set up a bedroom for

> her downstairs??)

>

> Anyway, I am scared, I know she is scared and is there anyone else

> here who is supporting there loved one through this that might be

> able to give me advice or has been through this already that can

> give me advice on what I can do to make this easier for her. I just

> dont know what to expect after her surgery and what else I will be

> able to do to help her before and after her surgery.

>

> Thanks for all your help and my prayers are out to all of you going

> through this. You are all very strong and couragous people and are

> in my thoughts.

>

> M.

> Lawrence, MA

>

[Guest guest]

I am about a week away from revision and can say that amazingly I

feel OK mentaly. I am a planner and organized things in my closet,

kitchen, and bath to be reachable. Doing this has helped me to feel

like I am doing things to aid in my own well being as well as

helping my husband and kids be able to help me get better. We also

have lots of friends who are bringing meals and have hired a nanny

and a cleaning lady to help out.

I am going to go shopping this weekend (my last weekend prior to

revision)to stock up on convenience items like pudding cups, granola

bars and small packaged drinks like boost and juices. That way life

will be a little easier for the first few weeks I am home.

The stress on me is just to get better while the stress on my

husband is to do everything else.

I know that helpless feeling since my daughter (9) had chest surgery

a few months ago. You are already doing the best thing possible by

offering support. I cried alot when I thought about my daughter's

impending surgery because there was nothing I could really do to

help her other than be there for her.

When you feel like crying sometimes it is best to let it out. A good

cry is a stress reliever. My husband is trying to figure out how to

occupy his alone time while I am in the operating room. He keeps

saying he is not worried because he knows that everything will be

fine.

My husband and I keep focusing on the end result and imagining me

standing up straight and being able to live a better quality of

life. Staying focused on why I am having the surgery is better than

focusing on the actual surgery. Just remember a year from now you

guys will be focusing on your lives together instead of a bum back.

Try to treat yourselves to a nice meal or to some fresh flowers not

because of the impending surgery but because you could use the

uplifting. Please know that you are in my thoughts and I am sure all

will work out for both you and your partner.

Jolynn

>

> Hello Everyone!

>

> Well, I joined this group becuase my partner of 5 years is getting

> ready to have Revision surgery with Dr Rand in Boston, MA and we

> both joined to get support and information in what she was about

to

> go through.

>

> We moved up here from Florida almost two years ago. She has quit

> smoking, seen Dr Rand a few times, gone through a mylegram, and

> other tests and she set a surgery date with Dr Rand for October

> 10th. Since then, it has been a rollercoaster ride to say the

least.

>

> She has been up and down so much. It was like everything she was

> going through (pain, dr appts, etc) has been surreal and when she

> got the letter in the mail from his office the other day

confirming

> everything, she broke down and emotionally lost it. It was like

that

> letter made it all real in her mind she was really going through

> this all over again. (Her first Harrington Rod surgery was in 1979)

>

> It has been a long hard road on both of us, and sometimes she

feels

> so alone because I just cant understand it all and A LOT of times

I

> feel alone because I dont understand it all and I dont know what I

> can do to help her. I will always be there to listen, hold her

hand,

> rub her back and do what ever she needs me to do. But there have

> been many MANY times that I cry my whole way to work (a 20 minute

> ride) because I feel like I cant do enough and no one understands

> what I am going through being there but feeling like my hands are

> tied most of the time.

>

> I know most of you are going through what she is and some may

> actually be in worse shape then she is. Her surgery is going to be

> done in 1 12-15 hour surgery from L4-S1 with Pelvic Implants. We

> have 1 last meeting with Rand at the end of August and then her

> prescreening on Sept 19th.

>

> Anyway, I guess what my issues are, is I am wondering what else we

> can do to make her more comfortable. We went to his fusion class

> (which was just bad for her because she was the worst case

scenario

> and we both could see everyone looking at her like she was walking

> to her death sentence). We have a lot of questions to ask him and

> the prescreening people. One thing I was wondering, Rand's

response

> about me needing to be home with her after surgery was that all I

> have to do is leave everything on counter level before I go to

work.

> Can someone answer me that has been through this HOW REALISTIC IS

> THAT??? (Oh, and he also stated that she will be able to walk up

the

> flight of stairs to our bedrooms or should we set up a bedroom for

> her downstairs??)

>

> Anyway, I am scared, I know she is scared and is there anyone else

> here who is supporting there loved one through this that might be

> able to give me advice or has been through this already that can

> give me advice on what I can do to make this easier for her. I

just

> dont know what to expect after her surgery and what else I will be

> able to do to help her before and after her surgery.

>

> Thanks for all your help and my prayers are out to all of you

going

> through this. You are all very strong and couragous people and are

> in my thoughts.

>

> M.

> Lawrence, MA

>

[Guest guest]

--Jolyn,

Best of luck!! I hope all goes well for you!! , PA

- In , " luqueback "

<luqueback@...> wrote:

>

> I am about a week away from revision and can say that amazingly I

> feel OK mentaly. I am a planner and organized things in my closet,

> kitchen, and bath to be reachable. Doing this has helped me to feel

> like I am doing things to aid in my own well being as well as

> helping my husband and kids be able to help me get better. We also

> have lots of friends who are bringing meals and have hired a nanny

> and a cleaning lady to help out.

>

> I am going to go shopping this weekend (my last weekend prior to

> revision)to stock up on convenience items like pudding cups,

granola

> bars and small packaged drinks like boost and juices. That way life

> will be a little easier for the first few weeks I am home.

>

> The stress on me is just to get better while the stress on my

> husband is to do everything else.

>

> I know that helpless feeling since my daughter (9) had chest

surgery

> a few months ago. You are already doing the best thing possible by

> offering support. I cried alot when I thought about my daughter's

> impending surgery because there was nothing I could really do to

> help her other than be there for her.

>

> When you feel like crying sometimes it is best to let it out. A

good

> cry is a stress reliever. My husband is trying to figure out how to

> occupy his alone time while I am in the operating room. He keeps

> saying he is not worried because he knows that everything will be

> fine.

>

> My husband and I keep focusing on the end result and imagining me

> standing up straight and being able to live a better quality of

> life. Staying focused on why I am having the surgery is better than

> focusing on the actual surgery. Just remember a year from now you

> guys will be focusing on your lives together instead of a bum back.

>

> Try to treat yourselves to a nice meal or to some fresh flowers not

> because of the impending surgery but because you could use the

> uplifting. Please know that you are in my thoughts and I am sure

all

> will work out for both you and your partner.

>

> Jolynn

>

>

> >

> > Hello Everyone!

> >

> > Well, I joined this group becuase my partner of 5 years is

getting

> > ready to have Revision surgery with Dr Rand in Boston, MA and we

> > both joined to get support and information in what she was about

> to

> > go through.

> >

> > We moved up here from Florida almost two years ago. She has quit

> > smoking, seen Dr Rand a few times, gone through a mylegram, and

> > other tests and she set a surgery date with Dr Rand for October

> > 10th. Since then, it has been a rollercoaster ride to say the

> least.

> >

> > She has been up and down so much. It was like everything she was

> > going through (pain, dr appts, etc) has been surreal and when she

> > got the letter in the mail from his office the other day

> confirming

> > everything, she broke down and emotionally lost it. It was like

> that

> > letter made it all real in her mind she was really going through

> > this all over again. (Her first Harrington Rod surgery was in

1979)

> >

> > It has been a long hard road on both of us, and sometimes she

> feels

> > so alone because I just cant understand it all and A LOT of times

> I

> > feel alone because I dont understand it all and I dont know what

I

> > can do to help her. I will always be there to listen, hold her

> hand,

> > rub her back and do what ever she needs me to do. But there have

> > been many MANY times that I cry my whole way to work (a 20 minute

> > ride) because I feel like I cant do enough and no one understands

> > what I am going through being there but feeling like my hands are

> > tied most of the time.

> >

> > I know most of you are going through what she is and some may

> > actually be in worse shape then she is. Her surgery is going to

be

> > done in 1 12-15 hour surgery from L4-S1 with Pelvic Implants. We

> > have 1 last meeting with Rand at the end of August and then her

> > prescreening on Sept 19th.

> >

> > Anyway, I guess what my issues are, is I am wondering what else

we

> > can do to make her more comfortable. We went to his fusion class

> > (which was just bad for her because she was the worst case

> scenario

> > and we both could see everyone looking at her like she was

walking

> > to her death sentence). We have a lot of questions to ask him and

> > the prescreening people. One thing I was wondering, Rand's

> response

> > about me needing to be home with her after surgery was that all I

> > have to do is leave everything on counter level before I go to

> work.

> > Can someone answer me that has been through this HOW REALISTIC IS

> > THAT??? (Oh, and he also stated that she will be able to walk up

> the

> > flight of stairs to our bedrooms or should we set up a bedroom

for

> > her downstairs??)

> >

> > Anyway, I am scared, I know she is scared and is there anyone

else

> > here who is supporting there loved one through this that might be

> > able to give me advice or has been through this already that can

> > give me advice on what I can do to make this easier for her. I

> just

> > dont know what to expect after her surgery and what else I will

be

> > able to do to help her before and after her surgery.

> >

> > Thanks for all your help and my prayers are out to all of you

> going

> > through this. You are all very strong and couragous people and

are

> > in my thoughts.

> >

> > M.

> > Lawrence, MA

> >

>

[Guest guest]

Hi, --

I want to offer you a very warm welcome to the group. I think you --

like everyone else in a supportive or caregiver role with us

revision-surgery people -- are " doing God's work. "

Dr. Rand did my own initial revision surgery. He was great, and I

recommend him without reservation. I expect his advice about leaving

things at counter level will prove to be sound advice. I was fine

during the day without someone staying with me every minute

following my release form the hospital. Living in Lawrence, you

should be much better able to set up the home health care your

partner may need with the help of a discharge planner at New England

Baptist. My one problem was that I came home to Chicago a little

earlier than I should have. My therapists here were on the horn to

Dr. Rand rather urgently about this and that, as I was an ornery

patient and had a few minor complications. (The overall complication

rate for revision surgery, as you may know, is about 30 percent.) In

retrospect, I might have done better to stay Jordan Rehab a little

longer. If your partner's insurance allows this, she may also want

to consider carefully whether she is really ready to go home as soon

as she might want to. It can be a big shock to leave a setting in

which all your needs are met automatically -- despite previous

surgeries, I was not really prepared for this.

I had my posterior revision surgery on Dec. 11, 2001, followed by

the anterior and final posterior surgery on Dec. 24 or thereabouts,

and I was back in Chicago for New Year's Day. It was just too soon.

I think the best thing you can do for your partner is understand

that she MAY be in quite a state as the surgery approaches. I am

generally a fairly calm, unflappable person, but by the last few pre-

op days, I was just about blowing my mind and bouncing off the

walls. I have heard this from others -- not everyone, but many, many

revision surgery patients. A total freakout is just about the norm

as The Day arrives. Just try to understand that this may happen, and

let it happen -- I think this is about the best thing you can do

(besides taking very good care of yourself and trying to make sure

that your own needs get met somehow -- easier said than done, I

know, when you are in such a responsible caregiving role).

It is also very important for a revision-surgery patient -- in my

opinion -- to have at least one close person in her life who can

remain at her side pretty much 24/7 in the days immediately after

the surgery. Are you planning to sleep in the room with your partner

at the hospital? This would be an excellent idea. My son stayed with

me the whole month I was in Boston, and it made a big difference --

especially in the early days after each installment of the surgery,

when I was too groggy to assert myself in my own behalf with anyone

who pushed me too hard or proposed something I would not have

wanted. If nothing else, it helps to have someone at one's bedside

to push the button for the " self " -administered morphine -- with the

patient's ur advance consent -- if she is conked out (as I often

was) at the time she could have another dose and probably could use

one. This way, she will not wake up in excruciating pain from

missing a dose. I believe my son also said a few supportive words

(as I was screeching in protest) when one PT tried to get me walking

the first day after my surgery. Most of the PT's were great, but

this guy was definitely overambitious.

As I got better, my son took off to see the sights in Boston. I also

had some friends and relatives who came to see me and then took him

out for pizza or invited him over for dinner. Again, I think this is

really important -- try to do some nice things for you, see some

other people, whatever might give you a little relief from the

hospital, once your partner is out of the critical period.

My heart goes out to both of you. This is not an easy thing to deal

with. It is very likely to make a great change for the better in

both of your lives, but you just have to get through this very

challenging time. Do keep us posted on your situation.

Best,

>

> Hello Everyone!

>

> Well, I joined this group becuase my partner of 5 years is getting

> ready to have Revision surgery with Dr Rand in Boston, MA and we

> both joined to get support and information in what she was about

to

> go through.

>

> We moved up here from Florida almost two years ago. She has quit

> smoking, seen Dr Rand a few times, gone through a mylegram, and

> other tests and she set a surgery date with Dr Rand for October

> 10th. Since then, it has been a rollercoaster ride to say the

least.

>

> She has been up and down so much. It was like everything she was

> going through (pain, dr appts, etc) has been surreal and when she

> got the letter in the mail from his office the other day

confirming

> everything, she broke down and emotionally lost it. It was like

that

> letter made it all real in her mind she was really going through

> this all over again. (Her first Harrington Rod surgery was in 1979)

>

> It has been a long hard road on both of us, and sometimes she

feels

> so alone because I just cant understand it all and A LOT of times

I

> feel alone because I dont understand it all and I dont know what I

> can do to help her. I will always be there to listen, hold her

hand,

> rub her back and do what ever she needs me to do. But there have

> been many MANY times that I cry my whole way to work (a 20 minute

> ride) because I feel like I cant do enough and no one understands

> what I am going through being there but feeling like my hands are

> tied most of the time.

>

> I know most of you are going through what she is and some may

> actually be in worse shape then she is. Her surgery is going to be

> done in 1 12-15 hour surgery from L4-S1 with Pelvic Implants. We

> have 1 last meeting with Rand at the end of August and then her

> prescreening on Sept 19th.

>

> Anyway, I guess what my issues are, is I am wondering what else we

> can do to make her more comfortable. We went to his fusion class

> (which was just bad for her because she was the worst case

scenario

> and we both could see everyone looking at her like she was walking

> to her death sentence). We have a lot of questions to ask him and

> the prescreening people. One thing I was wondering, Rand's

response

> about me needing to be home with her after surgery was that all I

> have to do is leave everything on counter level before I go to

work.

> Can someone answer me that has been through this HOW REALISTIC IS

> THAT??? (Oh, and he also stated that she will be able to walk up

the

> flight of stairs to our bedrooms or should we set up a bedroom for

> her downstairs??)

>

> Anyway, I am scared, I know she is scared and is there anyone else

> here who is supporting there loved one through this that might be

> able to give me advice or has been through this already that can

> give me advice on what I can do to make this easier for her. I

just

> dont know what to expect after her surgery and what else I will be

> able to do to help her before and after her surgery.

>

> Thanks for all your help and my prayers are out to all of you

going

> through this. You are all very strong and couragous people and are

> in my thoughts.

>

> M.

> Lawrence, MA

>

[Guest guest]

P.S. I just re-read your letter and was struck by your feeling of

aloneness. I am wondering if you have anyone else in your lives who

can take some of the load off you? Since you only recently moved to

Boston, I suppose this may be unrealistic. I hope that going to

work, at least, gives you a change of mental geography -- some new

faces and new issues to deal with. At least I hope your work is not

ADDING to the stress in any big way!

I also want to comment on the fusion class you attended. I am so

sorry you felt as if your partner was attracting special (negative)

attention. I myself felt as if I was being stared at many times

during my last preoperative months, albeit by more " normal "

individuals outside the hospital setting. I carried my torso at a

ninety-degree angle to the ground and needed a walker for support at

all times. Somehow I missed the fusion class -- which may be a good

thing, now that I have heard about your experiences in such a class.

At the time of my Boston surgery, I heard about at least one other

patient of Dr. Rand's who had been more severely deformed than I

was, pre-revision. Otherwise, I would have thought that mine was the

worst case anyone could have.

Best,

-- In , " beltanegrrl "

<beltanegrrl@...> wrote:

>

> Hello Everyone!

>

> Well, I joined this group becuase my partner of 5 years is getting

> ready to have Revision surgery with Dr Rand in Boston, MA and we

> both joined to get support and information in what she was about

to

> go through.

>

> We moved up here from Florida almost two years ago. She has quit

> smoking, seen Dr Rand a few times, gone through a mylegram, and

> other tests and she set a surgery date with Dr Rand for October

> 10th. Since then, it has been a rollercoaster ride to say the

least.

>

> She has been up and down so much. It was like everything she was

> going through (pain, dr appts, etc) has been surreal and when she

> got the letter in the mail from his office the other day

confirming

> everything, she broke down and emotionally lost it. It was like

that

> letter made it all real in her mind she was really going through

> this all over again. (Her first Harrington Rod surgery was in 1979)

>

> It has been a long hard road on both of us, and sometimes she

feels

> so alone because I just cant understand it all and A LOT of times

I

> feel alone because I dont understand it all and I dont know what I

> can do to help her. I will always be there to listen, hold her

hand,

> rub her back and do what ever she needs me to do. But there have

> been many MANY times that I cry my whole way to work (a 20 minute

> ride) because I feel like I cant do enough and no one understands

> what I am going through being there but feeling like my hands are

> tied most of the time.

>

> I know most of you are going through what she is and some may

> actually be in worse shape then she is. Her surgery is going to be

> done in 1 12-15 hour surgery from L4-S1 with Pelvic Implants. We

> have 1 last meeting with Rand at the end of August and then her

> prescreening on Sept 19th.

>

> Anyway, I guess what my issues are, is I am wondering what else we

> can do to make her more comfortable. We went to his fusion class

> (which was just bad for her because she was the worst case

scenario

> and we both could see everyone looking at her like she was walking

> to her death sentence). We have a lot of questions to ask him and

> the prescreening people. One thing I was wondering, Rand's

response

> about me needing to be home with her after surgery was that all I

> have to do is leave everything on counter level before I go to

work.

> Can someone answer me that has been through this HOW REALISTIC IS

> THAT??? (Oh, and he also stated that she will be able to walk up

the

> flight of stairs to our bedrooms or should we set up a bedroom for

> her downstairs??)

>

> Anyway, I am scared, I know she is scared and is there anyone else

> here who is supporting there loved one through this that might be

> able to give me advice or has been through this already that can

> give me advice on what I can do to make this easier for her. I

just

> dont know what to expect after her surgery and what else I will be

> able to do to help her before and after her surgery.

>

> Thanks for all your help and my prayers are out to all of you

going

> through this. You are all very strong and couragous people and are

> in my thoughts.

>

> M.

> Lawrence, MA

>

[Guest guest]

,

You are truly amazing! Just reread your post and look at how far

you've come in so short a time. Let's get together soon.

Jane

> >

> > Hello Everyone!

> >

> > Well, I joined this group becuase my partner of 5 years is

getting

> > ready to have Revision surgery with Dr Rand in Boston, MA and we

> > both joined to get support and information in what she was about

to

> > go through.

> >

> > We moved up here from Florida almost two years ago. She has quit

> > smoking, seen Dr Rand a few times, gone through a mylegram, and

> > other tests and she set a surgery date with Dr Rand for October

> > 10th. Since then, it has been a rollercoaster ride to say the

> least.

> >

> > She has been up and down so much. It was like everything she was

> > going through (pain, dr appts, etc) has been surreal and when

she

> > got the letter in the mail from his office the other day

confirming

> > everything, she broke down and emotionally lost it. It was like

> that

> > letter made it all real in her mind she was really going through

> > this all over again. (Her first Harrington Rod surgery was in

1979)

> >

> > It has been a long hard road on both of us, and sometimes she

feels

> > so alone because I just cant understand it all and A LOT of

times I

> > feel alone because I dont understand it all and I dont know what

I

> > can do to help her. I will always be there to listen, hold her

> hand,

> > rub her back and do what ever she needs me to do. But there have

> > been many MANY times that I cry my whole way to work (a 20

minute

> > ride) because I feel like I cant do enough and no one

understands

> > what I am going through being there but feeling like my hands

are

> > tied most of the time.

> >

> > I know most of you are going through what she is and some may

> > actually be in worse shape then she is. Her surgery is going to

be

> > done in 1 12-15 hour surgery from L4-S1 with Pelvic Implants. We

> > have 1 last meeting with Rand at the end of August and then her

> > prescreening on Sept 19th.

> >

> > Anyway, I guess what my issues are, is I am wondering what else

we

> > can do to make her more comfortable. We went to his fusion class

> > (which was just bad for her because she was the worst case

scenario

> > and we both could see everyone looking at her like she was

walking

> > to her death sentence). We have a lot of questions to ask him

and

> > the prescreening people. One thing I was wondering, Rand's

response

> > about me needing to be home with her after surgery was that all

I

> > have to do is leave everything on counter level before I go to

> work.

> > Can someone answer me that has been through this HOW REALISTIC

IS

> > THAT??? (Oh, and he also stated that she will be able to walk up

> the

> > flight of stairs to our bedrooms or should we set up a bedroom

for

> > her downstairs??)

> >

> > Anyway, I am scared, I know she is scared and is there anyone

else

> > here who is supporting there loved one through this that might

be

> > able to give me advice or has been through this already that can

> > give me advice on what I can do to make this easier for her. I

just

> > dont know what to expect after her surgery and what else I will

be

> > able to do to help her before and after her surgery.

> >

> > Thanks for all your help and my prayers are out to all of you

going

> > through this. You are all very strong and couragous people and

are

> > in my thoughts.

> >

> > M.

> > Lawrence, MA

> >

>

[Guest guest]

--- Jane,

I'd love to!!! I will be in Boston next week to see Rand for the 6th

month check up. Let me know. My cell is 484-919-4950. I just get

frustrated with myself and feel like I should be doing more, faster

but I have to keep reminding myself this was horrific surgery!!!!!How

are you doing? , PA

In , " Jane S. " <jane434@...>

wrote:

>

> ,

>

> You are truly amazing! Just reread your post and look at how far

> you've come in so short a time. Let's get together soon.

>

> Jane

>

>

> > >

> > > Hello Everyone!

> > >

> > > Well, I joined this group becuase my partner of 5 years is

> getting

> > > ready to have Revision surgery with Dr Rand in Boston, MA and

we

> > > both joined to get support and information in what she was

about

> to

> > > go through.

> > >

> > > We moved up here from Florida almost two years ago. She has

quit

> > > smoking, seen Dr Rand a few times, gone through a mylegram, and

> > > other tests and she set a surgery date with Dr Rand for October

> > > 10th. Since then, it has been a rollercoaster ride to say the

> > least.

> > >

> > > She has been up and down so much. It was like everything she

was

> > > going through (pain, dr appts, etc) has been surreal and when

> she

> > > got the letter in the mail from his office the other day

> confirming

> > > everything, she broke down and emotionally lost it. It was like

> > that

> > > letter made it all real in her mind she was really going

through

> > > this all over again. (Her first Harrington Rod surgery was in

> 1979)

> > >

> > > It has been a long hard road on both of us, and sometimes she

> feels

> > > so alone because I just cant understand it all and A LOT of

> times I

> > > feel alone because I dont understand it all and I dont know

what

> I

> > > can do to help her. I will always be there to listen, hold her

> > hand,

> > > rub her back and do what ever she needs me to do. But there

have

> > > been many MANY times that I cry my whole way to work (a 20

> minute

> > > ride) because I feel like I cant do enough and no one

> understands

> > > what I am going through being there but feeling like my hands

> are

> > > tied most of the time.

> > >

> > > I know most of you are going through what she is and some may

> > > actually be in worse shape then she is. Her surgery is going to

> be

> > > done in 1 12-15 hour surgery from L4-S1 with Pelvic Implants.

We

> > > have 1 last meeting with Rand at the end of August and then her

> > > prescreening on Sept 19th.

> > >

> > > Anyway, I guess what my issues are, is I am wondering what else

> we

> > > can do to make her more comfortable. We went to his fusion

class

> > > (which was just bad for her because she was the worst case

> scenario

> > > and we both could see everyone looking at her like she was

> walking

> > > to her death sentence). We have a lot of questions to ask him

> and

> > > the prescreening people. One thing I was wondering, Rand's

> response

> > > about me needing to be home with her after surgery was that all

> I

> > > have to do is leave everything on counter level before I go to

> > work.

> > > Can someone answer me that has been through this HOW REALISTIC

> IS

> > > THAT??? (Oh, and he also stated that she will be able to walk

up

> > the

> > > flight of stairs to our bedrooms or should we set up a bedroom

> for

> > > her downstairs??)

> > >

> > > Anyway, I am scared, I know she is scared and is there anyone

> else

> > > here who is supporting there loved one through this that might

> be

> > > able to give me advice or has been through this already that

can

> > > give me advice on what I can do to make this easier for her. I

> just

> > > dont know what to expect after her surgery and what else I will

> be

> > > able to do to help her before and after her surgery.

> > >

> > > Thanks for all your help and my prayers are out to all of you

> going

> > > through this. You are all very strong and couragous people and

> are

> > > in my thoughts.

> > >

> > > M.

> > > Lawrence, MA

> > >

> >

>

[Guest guest]

support

>I was moved to write because of the TIME Sandy took to

>review band rules and to simply EDUCATE us. Thank you.

>The exercise part is huge for me. If I don't do the 45

>minutes each day, I maintain (I'm menopausal and

>hypothyroid).

Sandy is indeed great at that. Maybe she'll write a book someday.

>The advice we get here is just awesome. Dan has taught

>about Smart Lipo...

The adventure is continuing. A little glitch I'll write about later. No

problem with the doctor or procedure, but my body.

>You two just rock on. This is wonderful. Carry on!!

>Success speaks for itself.

I'm still hoping to get my smartlipo stuff up on web by weekend.

And, us helping others helps us. If I remind someone about liquid calories, I'm

reminding MYSELF at the same time. And I need it. Reminding, butt kicking,

etc.

Finally, plenty of others have helped us over the years, and it is the least we

can do to try to pass it on.

dan

" Even if you're on the right track, you'll get run over if you just sit there. "

-- Will

www.mylapband.tk or www.riverofdata.com

Dan Lester, Boise, Idaho, USA

Dr. Ortiz, Tijuana, 4/27/03

355/323/210/190

[Guest guest]

I agree, I have learned so much more from this support group then I ever learned

from my surgeons office. This is the place I go for information, advise,

support and what not. Thanks for all the good information you continue to give

to us.

Sherry s.

support

> I was moved to write because of the TIME Sandy took to

> review band rules and to simply EDUCATE us. Thank you.

> The exercise part is huge for me. If I don't do the 45

> minutes each day, I maintain (I'm menopausal and

> hypothyroid).

>

> The advice we get here is just awesome. Dan has taught

> about Smart Lipo...

>

> You two just rock on. This is wonderful. Carry on!!

> Success speaks for itself.

>

> Glo

> 213/161/140

> Banded in Mexico by Dr. Rumbaut

>

>

>

>

________________________________________________________________________________\

____

> Get your own web address.

> Have a HUGE year through Small Business.

> http://smallbusiness./domains/?p=BESTDEAL

>

[Guest guest]

I sure echo what Dan said. We started this group becuase we are

educators, and learned a lot the hard way - aND WANT TO SAVE YOU GUYS

SOME OF THE GRIEF. When we were both banded 4 yrs ago (within, I

think , just a couple weeks of each other, although we had not met

then) there was not much info at all available. We both did many many

many hours of research to find things out by purselves. We both also

had very experienced Mexican docs even then, which helped a lot.

It helps ME stay on course by devoting time to the board. It makes me

think every day how far I have come, the misery I was in before, and

that I NEVER EVER want to be there again. so thank YOU all for

keeping me motivatedc to maintain! We're all in this together...

Sandy

>

> support

>

>

> >I was moved to write because of the TIME Sandy took to

> >review band rules and to simply EDUCATE us. Thank you.

> >The exercise part is huge for me. If I don't do the 45

> >minutes each day, I maintain (I'm menopausal and

> >hypothyroid).

>

> Sandy is indeed great at that. Maybe she'll write a book someday.

>

> >The advice we get here is just awesome. Dan has taught

> >about Smart Lipo...

>

> The adventure is continuing. A little glitch I'll write about

later. No problem with the doctor or procedure, but my body.

>

> >You two just rock on. This is wonderful. Carry on!!

> >Success speaks for itself.

>

> I'm still hoping to get my smartlipo stuff up on web by weekend.

>

> And, us helping others helps us. If I remind someone about liquid

calories, I'm reminding MYSELF at the same time. And I need it.

Reminding, butt kicking, etc.

>

> Finally, plenty of others have helped us over the years, and it is

the least we can do to try to pass it on.

>

> dan

>

> " Even if you're on the right track, you'll get run over if you just

sit there. " -- Will

> www.mylapband.tk or www.riverofdata.com

> Dan Lester, Boise, Idaho, USA

> Dr. Ortiz, Tijuana, 4/27/03

> 355/323/210/190

>

[Guest guest]

Sandy and Dan

that is so cool because you guys had different doctors but the end result

should be the same.

It is good too because one is male and other female briging variety in the

process.

Thank you so much

Lidia

Sandy <MoonshadowRN@...> wrote:

I sure echo what Dan said. We started this group becuase we are

educators, and learned a lot the hard way - aND WANT TO SAVE YOU GUYS

SOME OF THE GRIEF. When we were both banded 4 yrs ago (within, I

think , just a couple weeks of each other, although we had not met

then) there was not much info at all available. We both did many many

many hours of research to find things out by purselves. We both also

had very experienced Mexican docs even then, which helped a lot.

It helps ME stay on course by devoting time to the board. It makes me

think every day how far I have come, the misery I was in before, and

that I NEVER EVER want to be there again. so thank YOU all for

keeping me motivatedc to maintain! We're all in this together...

Sandy

>

> support

>

>

> >I was moved to write because of the TIME Sandy took to

> >review band rules and to simply EDUCATE us. Thank you.

> >The exercise part is huge for me. If I don't do the 45

> >minutes each day, I maintain (I'm menopausal and

> >hypothyroid).

>

> Sandy is indeed great at that. Maybe she'll write a book someday.

>

> >The advice we get here is just awesome. Dan has taught

> >about Smart Lipo...

>

> The adventure is continuing. A little glitch I'll write about

later. No problem with the doctor or procedure, but my body.

>

> >You two just rock on. This is wonderful. Carry on!!

> >Success speaks for itself.

>

> I'm still hoping to get my smartlipo stuff up on web by weekend.

>

> And, us helping others helps us. If I remind someone about liquid

calories, I'm reminding MYSELF at the same time. And I need it.

Reminding, butt kicking, etc.

>

> Finally, plenty of others have helped us over the years, and it is

the least we can do to try to pass it on.

>

> dan

>

> " Even if you're on the right track, you'll get run over if you just

sit there. " -- Will

> www.mylapband.tk or www.riverofdata.com

> Dan Lester, Boise, Idaho, USA

> Dr. Ortiz, Tijuana, 4/27/03

> 355/323/210/190

>

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

Building a website is a piece of cake.

Small Business gives you all the tools to get online.

[Guest guest]

Dan, does Dra. have a website? I tried to look her up but didn't find a

website. Thanks

/Dallas

[Guest guest]

Hi Sandy,

I have seen FiberSure (pretty sure this is the name??) on the TV, it shows

that it can be add to any food, cold or hot. I have not seen what the main

ingredient that is in it. Do you know or anyone else know what's in it and is it

a good way to add fiber? Just wondering if it's the expandable type? Would love

to buy it but keep forgetting to check it out when I'm actually in the store. My

youngest daughter needs added fiber, we are going to have to put her on miralax

and I'd rather try something else if possible. but if I put in our food alllll

of us will get it, (smile). Thanks, Jill

Jill S.

358/296/160??

12-09-06,Dr.Kuri

Your only as good as you think you can be!!

Fussy? Opinionated? Impossible to please? Perfect. Join 's user

panel and lay it on

us.http://us.rd./evt=48516/*http://surveylink./gmrs/_pane\

l_invite.asp?a=7 hot CTA = Join 's user panel

[Guest guest]

Hi, Jill - I believe it's far better to get our fiber from good band

foods that make the band work, and are generally low-cal. If we use

this fiber-sure, it is in addition to the low-fiber foods that are

higher-cal.

These types of fiber supplements also can swell inside us, and a good

many people have gotten in to trouble.

But it should be ok for a non-banded child. However, you should

really check with her pediatrician first. Kids are rarely

constipated with a decent diet, and there are many physical things

that her doc may wish to check, if she is truly badly constipated.

In the meantime, until you can check with the pediatrician (I'm

assuming your " youngest " is a child?), reduce these constipating

foods in her diet: milk and milk products, bananas, applesauce. TRy a

daily glass of prune juice too - if you mix it 1/2 and 1/2 with 7-ip,

it tastes like Dr. Pepper. Or several soft dry or stewed prunes a

day. They make a good snack, and they are still one of the best,

easiest, and cheapest " fixes " ! ,

For BANDSTERS who absolutely cannot get in enough fiber otherwise, i

like the Metamucil cookies - they taste fine, count as " real food "

and we can count the calories in them toward our daily goals.

Hope this helps -

Sandy R, RN, MN

banded 4 yrs, at goal x 3 + yrs

>

> Hi Sandy,

>

> I have seen FiberSure (pretty sure this is the name??) on the TV,

it shows that it can be add to any food, cold or hot. I have not seen

what the main ingredient that is in it. Do you know or anyone else

know what's in it and is it a good way to add fiber? Just wondering

if it's the expandable type? Would love to buy it but keep forgetting

to check it out when I'm actually in the store. My youngest daughter

needs added fiber, we are going to have to put her on miralax and I'd

rather try something else if possible. but if I put in our food

alllll of us will get it, (smile). Thanks, Jill

>

>

> Jill S.

> 358/296/160??

> 12-09-06,Dr.Kuri

[Guest guest]

Hi Ron and other members of the list.Now it is my hope that all of you are in good shape and health. I am this time round writing to all the members and friends who may be willing to lend a hand in my predicament.Following the systematic violence which has been experienced in Naivasha, I would wish to share with you the actual situation as one of the victims directly affected with the violence since i can count up 5 people i personally know who were slaughtered. The house that was burnt with 17 people is 500m. from my home.I have lost all my and those of my family belongings both in the house and the office. I was rescued by friend who took a bold move and courage to risk the lives of his family and his remain with my daughter this was very dangerous since the neighbors, water vender and texi (cab) who know virtually ever body were taking a door to door operations so far i am

very sure that deaths in Naivasha is over 250 people.Now i am in Nairobi temporarily while contemplating the next move i wish to appeal to you and your friends to bail me out as i start a new life, your donations will be of great help to me at this point of need.I may do a documentary if i got the finances on the same.Ac Name Otieno OdongoAc No. 042115358155Swift Code KCBLKENXBank Kenya Commercial BankBranch Naivasha Branch.RgdsOtieno+254 722 902 223

Never miss a thing. Make your homepage.

[Guest guest]

Hi Ron and other members of the list.Now it is my hope that all of you are in good shape and health. I am this time round writing to all the members and friends who may be willing to lend a hand in my predicament.Following the systematic violence which has been experienced in Naivasha, I would wish to share with you the actual situation as one of the victims directly affected with the violence since i can count up 5 people i personally know who were slaughtered. The house that was burnt with 17 people is 500m. from my home.I have lost all my and those of my family belongings both in the house and the office. I was rescued by friend who took a bold move and courage to risk the lives of his family and his remain with my daughter this was very dangerous since the neighbors, water vender and texi (cab) who know virtually ever body were taking a door to door operations so far i am

very sure that deaths in Naivasha is over 250 people.Now i am in Nairobi temporarily while contemplating the next move i wish to appeal to you and your friends to bail me out as i start a new life, your donations will be of great help to me at this point of need.I may do a documentary if i got the finances on the same.Ac Name Otieno OdongoAc No. 042115358155Swift Code KCBLKENXBank Kenya Commercial BankBranch Naivasha Branch.RgdsOtieno+254 722 902 223

Never miss a thing. Make your homepage.

[Guest guest]

SandyI thought exactly the same - 'here we go again' - perhaps Jan is trying to slag us off so the new members will join 'her' group. After all what was said in the last few weeks - we are wasting our time but as you said people shouldn't bash our group if they don't like it but its good enough for them still to visit - cant have it all ways.

AndyOn 03/03/2008, toomuchclutter <sandycarroll@...> wrote:

So Jan, why do you keep coming here if you don't like the support? I don't want to open a can of worms, but frankly, getting tired of the bashing. I've bent over backwards as many of us have to support you and your choices, but you continue to bash this group as unsupportive. Forgive me, I'm irritable today, making looking for someone to pick on. But PLEASE, quit stating this group isn't supportive, yet you continue to come here. You are welcome here, but perhaps the unspoken rule is not to bash the group if you keep coming.

Sandy

[Guest guest]

I keep coming here because occasionally I have met a very few who are

supportive. I guess it's kind of like TV...if you don't like what I

write you can change the channel. I also felt that I am constantly

bashed by the attitude you have just put across to me.... yet I am not

bashing you....simply offering some help to someone else.... I do not

know why you are so irritated by me.... I am a seeker of the few who I

can talk to. There are not many places to go.... I have to keep trying

at any rate. If what you want is me to disappear from here...then why

don't you just say that?

Jan

>

>

> So Jan, why do you keep coming here if you don't like the support? I

> don't want to open a can of worms, but frankly, getting tired of the

> bashing. I've bent over backwards as many of us have to support you

and

> your choices, but you continue to bash this group as unsupportive.

> Forgive me, I'm irritable today, making looking for someone to pick

on.

> But PLEASE, quit stating this group isn't supportive, yet you continue

> to come here. You are welcome here, but perhaps the unspoken rule is

> not to bash the group if you keep coming.

>

> Sandy

>

[Guest guest]

I am not bashing anyone or looking for anyone to join any group. I am

communicating.

Jan

> >

> > So Jan, why do you keep coming here if you don't like the

support? I

> > don't want to open a can of worms, but frankly, getting tired of

the

> > bashing. I've bent over backwards as many of us have to support

you and

> > your choices, but you continue to bash this group as

unsupportive. Forgive

> > me, I'm irritable today, making looking for someone to pick on.

But PLEASE,

> > quit stating this group isn't supportive, yet you continue to

come here.

> > You are welcome here, but perhaps the unspoken rule is not to

bash the group

> > if you keep coming.

> >

> > Sandy

> >

> >

>

[Guest guest]

JanPlease show to the group how we have NOT been supportive as we would ALL like to see where we have gone wrong. The only support we cannot give is the support you want to hear that we are hiding the miracle 'alternative' cure for Achalasia.

This is why we are all irritated by your comments. We have all tried to support you but as I have already said and others have too - the support you want to hear will not come from this group as we tell the truth and we can't offer any alternative cures as they simply don't exist. People have claimed they have members on other groups that have been cured by methods other than surgery but when asked they have never appeared with any facts - THEY DONT EXIST. THERE IS NO CURE.

On 03/03/2008, wipperwillow <wipperwillow@...> wrote:

I keep coming here because occasionally I have met a very few who are supportive. I guess it's kind of like TV...if you don't like what I write you can change the channel. I also felt that I am constantly

bashed by the attitude you have just put across to me.... yet I am not bashing you....simply offering some help to someone else.... I do not know why you are so irritated by me.... I am a seeker of the few who I

can talk to. There are not many places to go.... I have to keep trying at any rate. If what you want is me to disappear from here...then why don't you just say that? Jan > > > So Jan, why do you keep coming here if you don't like the support? I > don't want to open a can of worms, but frankly, getting tired of the > bashing. I've bent over backwards as many of us have to support you

and > your choices, but you continue to bash this group as unsupportive. > Forgive me, I'm irritable today, making looking for someone to pick on. > But PLEASE, quit stating this group isn't supportive, yet you continue

> to come here. You are welcome here, but perhaps the unspoken rule is > not to bash the group if you keep coming. > > Sandy >

[Guest guest]

" have found there is very little

support for that approach in this group. " To me that is bashing, stating their is no support when there is if you would only accept it and take it on board as fact. " I may eventually have to go

the route of surgery but want to know all of my options. " Where will you be going for support when you realise that surgery IS the only option for you? We all want to know the options and they have all been explained - dilation, botox, surgery. They have been explained on this group by many people who have had to go through the same choices and you will see them listed time after time whenever you type 'Achalasia' into any search engine.

On 03/03/2008, wipperwillow <wipperwillow@...> wrote:

I am not bashing anyone or looking for anyone to join any group. I am communicating. Jan > > > > So Jan, why do you keep coming here if you don't like the support? I > > don't want to open a can of worms, but frankly, getting tired of

the > > bashing. I've bent over backwards as many of us have to support you and > > your choices, but you continue to bash this group as unsupportive. Forgive > > me, I'm irritable today, making looking for someone to pick on.

But PLEASE, > > quit stating this group isn't supportive, yet you continue to come here. > > You are welcome here, but perhaps the unspoken rule is not to bash the group > > if you keep coming.

> > > > Sandy > > > > >

[Guest guest]

You took the words right out of my mouth!

Tonia

>

>

> So Jan, why do you keep coming here if you don't like the support? I

> don't want to open a can of worms, but frankly, getting tired of the

> bashing. I've bent over backwards as many of us have to support you

and

> your choices, but you continue to bash this group as unsupportive.

> Forgive me, I'm irritable today, making looking for someone to pick

on.

> But PLEASE, quit stating this group isn't supportive, yet you

continue

> to come here. You are welcome here, but perhaps the unspoken rule is

> not to bash the group if you keep coming.

>

> Sandy

>

[Guest guest]

Jan -I dont think its that no one wants you here-we want as many

people here that can be, but look at your comments you always make

about this group.ENOUGH IS ENOUGH!

Tonia

> >

> >

> > So Jan, why do you keep coming here if you don't like the

support? I

> > don't want to open a can of worms, but frankly, getting tired of

the

> > bashing. I've bent over backwards as many of us have to support

you

> and

> > your choices, but you continue to bash this group as

unsupportive.

> > Forgive me, I'm irritable today, making looking for someone to

pick

> on.

> > But PLEASE, quit stating this group isn't supportive, yet you

continue

> > to come here. You are welcome here, but perhaps the unspoken

rule is

> > not to bash the group if you keep coming.

> >

> > Sandy

> >

>

[Guest guest]

Thanks Sandy, Tia and I agree too!!!!! To all the new people in the group, my family would have been lost without the great SUPPORT we received and still receive from everyone here.

Jan, we all know you don't feel supported here. You know when you write your little comments you are going to offend members but yet you write them anyways... "but have found there is very little support for that approach in this group." Why do you have to keep stirring the pot??

I am raising Tia with the old fashion saying, "If you don't have anything nice to say, don't say anything at all." Tia is only 10 and she had to have surgery a year ago. She loves this group and reaches out to them often. You can reach out to others and offer your support without having to say things that will offend members of this group.

ENOUGH!!

& Tia

Re: Support

You took the words right out of my mouth!Tonia>> > So Jan, why do you keep coming here if you don't like the support? I> don't want to open a can of worms, but frankly, getting tired of the> bashing. I've bent over backwards as many of us have to support you and> your choices, but you continue to bash this group as unsupportive. > Forgive me, I'm irritable today, making looking for someone to pick on. > But PLEASE, quit stating this group isn't supportive, yet you continue> to come here. You are welcome here, but perhaps the unspoken rule is> not to bash the group if you keep coming.> >

Sandy>

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

& Tia,

I’m so glad that Tia gets involved on here and looks for

herself!! What an knowledgeable adult she will grow to be one day!!! Maybe in

50 years (we will all be gone, GOD I HOPE I AM ANYWAY, GUESS I CAN’T

SPEAK FOR OTHERS) Tia will be the leader of an achalasia group that was born

years ago, and she has been able to be around to watch it grow into a CURE!!!

From:

achalasia [mailto:achalasia ] On Behalf Of

Bourm

Sent: Monday, March 03, 2008 7:31 PM

achalasia

Subject: Re: Support

Thanks Sandy, Tia and I agree

too!!!!! To all the new people in the group, my family would have been lost

without the great SUPPORT we received and still receive from everyone here.

Jan, we all know you don't

feel supported here. You know when you write your little comments you are going

to offend members but yet you write them anyways... " but have found

there is very little support for that approach in this group. " Why do you

have to keep stirring the pot??

I am raising Tia with the old

fashion saying, " If you don't have anything nice to say, don't say

anything at all. " Tia is only 10 and she had to have surgery a year ago.

She loves this group and reaches out to them often. You can reach out to

others and offer your support without having to say things that will

offend members of this group.

ENOUGH!!

& Tia

Re: Support

You took the words right out of my mouth!

Tonia

>

>

> So Jan, why do you keep coming here if you don't like the support? I

> don't want to open a can of worms, but frankly, getting tired of the

> bashing. I've bent over backwards as many of us have to support you

and

> your choices, but you continue to bash this group as unsupportive.

> Forgive me, I'm irritable today, making looking for someone to pick

on.

> But PLEASE, quit stating this group isn't supportive, yet you

continue

> to come here. You are welcome here, but perhaps the unspoken rule is

> not to bash the group if you keep coming.

>

> Sandy

>

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