New to the group

[Guest guest]

Hi Bill,

I am praying for you to defeat the tumer in your battle, and hope you will

find alternative methods instead of surgery.

I receive on my e-mail about how to defeat cancer,(book) , I will forward

the message to the group, see what is the opinion about it.

neli

>From: " bill Wilkins " <w.wilkins@...>

>Reply-cures for cancer

><cures for cancer >

>Subject: Re: Re: New to the group

>Date: Tue, 14 Aug 2007 16:41:58 -0700

>

>Nelly,

>I was amazed by your english. You did very well at introducing yourself.

>Sorry you had to go thru the conventional cancer treatment. I'm researching

>all alternative treatments to the dismay of my surgeon as he wants me under

>the knife right away.

>I've put my GIST tumer into a beniegn state using

>1. Dr Joanna Budwig's cancer diet

>2. Zeolite (still unsure of this one)

>3. Oxy-e

>4. Green Tea extract

>5 AHCC

>6. Latest! I Brewed up some Oleander Soup last night and i am taking very

>small amounts of that. It may be the best strategy yet.

>Still haven't shrunk the tumer! I will let everyone in the group know when

>I'm successful.

>Another person new to the group. Not yet a survivor like you!

>Bill

>

> Re: New to the group

>

>

> Hi Rich,

>

> I am also new to these groups and this is the first time I am

> writing.

> First to wish you good health and all your future tests and results

> to be to the most satisfaction.

> I am cancel survivor (if I can use this word as they usualy use it

> for the people who pass 5 years after discovering the cancer) , like

> you I was diagnozed in July 2005 with brest cancer, I passed the

> whole horror of surgery, himeotherapy , radiation and now I am on

> Tamoxifen.

>

> Now I am in good situation and and I do not have any complaints, but

> still I remember how horible for me was all above experience, forgot

> to mention I am 47 years old.

>

> I would like to comunicate with other people who are intersted in t

> his subject and can share their experience and advises and give

> their support.

>

> have a nice day

>

> (excuse my mistakes as I am foreigner - Bulgarian, so English is not

> my native).

>

> Nelly

>

>

> >

> > Good day all. My name is Rich and I am a cancer survivor. My

> cancer was

> > discovered in July of 2005. Stage II Squama cell in my left tonsil

> and left neck

> > lymph nodes.

> > I had my 9 week chemo and radiation done at Mass. General in

> Boston and neck

> > disection next store at Mass. Eye & Ear Infirmary.

> > Dr.'s and Busse at MGH and Dr. Rocco at ME & E.

> > I survived the treatment and currently cancer free 1 1/2 years.

> > Taste buds are at 60%+/- and saliva glands 60%+/-.

> > I have lots of energy for 57yrs. old!

> > If I can be of any help to anyone please feel free to email me.

> > I'm also moderator on an AtrialFibrillation support group.

> But cured of

> > that ailment as well.

> > Thank you for listening.

> > Rich

> >

> >

> > **************************************

> > Get a sneak peek of the all-new

> > AOL at http://discover.aol.com/memed/aolcom30tour

> >

> >

> >

[Guest guest]

Hi Michele,

I am interested in your story. What type surgery did you have in the 50's? I,

too, have a C curve and it seems we are in the minority. Did you have a gradual

increase in shortness of breath? I'm 56, so not far behind you in age. I had my

curve fused at the age of 45.

I don't make it on line everyday and unfortunately answered a note from Debbie

earlier tonight that I included questions in that she had already addressed in

later notes. I say this to apologize to her (Debbie) if she is still reading the

posts, and to tell you that if you get a chance to answer my note and don't hear

back from me for days, I am interested in your answer.

I feel I had to have the fusion when I did. As far as future surgery, my

medical dr made the comment last year that I am still " young " and that I have

years and years ahead to consider surgery if my problems get unmanageable. Since

I was told that the scoliosis drs prefer to do fusions before 40, I find that

statement to be unreasonable. However, it was what I wanted and needed to hear

at the time and it allowed me to continue to delay surgery with more peace of

mind. Had you ever been told that more surgery would've helped at any time since

the 50's? And have you been told that future surgery is out of the question with

the pulmonary limitations you now have?

Thanks for adding your perspective. It is helpful to see the many directions

this scoliosis takes us and the outsomes from each choice. I dream of being able

to play hard once again but have accepted the limitations as long as I am not

too terribly disabled.

Bea

Micmb <fordigests@...> wrote:

Debby:

" OH My: You are 2-3 years older than me; you are the

self that had the fusion

that I didn't have and you are having problems. Not

that I wish them on anyone,

noone, but... since I just decided to have this spinal

lower back fusion, I have

been really second-guessing myself about past

therapies, things done and not

done, and Here you are with the fusion I did' have and

you are still

questioning. And hurting. The scoliosis road is long

and winding, and there are

no answers. I see now. Especially us that are a little

older, because 45 years

ago, there were a lot less options. After I stopped

nursing in late 03', due to

the discomfort in my back, I tried to help elders, and

I did. Many. Now my

husband and I are involved in helping one lady. 95 in

Oct, who has a very severe

scoliosis. She is the opposite of me. She curves left

and I curve

right.Margaret. She's a kick. No one ever did anything

for her, surgery-wise.

She didn't have the option. She has told me that she

hasn't had

pain for years. She is pretty crippled but walks well

with a walker. And very

cognizant until this Nov. when she fell. But she makes

me see that its sometimes

not so bad to do nothing. And have no worse outcome,

at least pain wise. She is

95! I hope to live as long. God bless us all.

Debbie "

Debbie: I'm a little bit late in my response...sorry

but that seems to be par for the course for me these

days. I wanted to add some food for thought to your

message (shown above). I'm older than you. In fact,

I may be one of the oldest ones in this

group........63 years old. I have severe idiop. scoli

for which I had surgery (3 of them) back in 1957 and

58....most of you weren't even born then.....lol.

Anyhow, those were the only surgeries I ever had. I

then proceeded to live my life (as I was told). When

I last saw an orthoped. sometime around 2001 or maybe

earlier my C curve was measured at around 110 degrees.

I am also on supplemental O2 for the rest of my life.

My severe scoli has permanently squashed my lungs.

My point to make it short.....to do nothing might mean

you might need O2 like me. Please get examined by a

pulmonary dr. and have tests taken to see how your

breathing is and how good your lungs still are. I

don't mean to frighten anyone but it sure was a shock

for me to hear some 9 years ago that I will have to

drag around an O2 tank for the rest of my life.

Michele

PS. I will be happy to provide more background if you

wish.

__________________________________________________________

Be a better Heartthrob. Get better relationship answers from someone who knows.

Answers - Check it out.

http://answers./dir/?link=list & sid=396545433

[Guest guest]

Hi. Beverlee, I'm here. I'm in the Santa Cruz area now where we've gone to do

elder care/housesitting for 3 weeks; from here, on Sept 27 I go to have my

surgery. Fantastic beauriful redwoods, a beautiful home, hottub; I am truly

blessed to relax here before my surgery. I must agree that sometimes these

emails run together/get confusing.

I'm not sure what your question is? But I would like you to rephrase it. In

my particular case, I never really had a specialist that I could trust, and

didn't have real problems with my scoliosis til I got to my 50's. Yes, there was

an ortho dr. but not a scoli specialist, that just kept saying, you'll have to

eventually have scoliosis surgery, and you'll know it when it's time. Then the

last time I saw him he said: it's too late, it would be too complicated; but he

wasn't great on communication. I didn't really realize I had a big problem til

this year; I knew I had mild spinal stenosis, but it really all started to get

crazy this spring; when my pain got way out of control. I've been looking at

surgery since then, but now that I found a surgeon I think I can trust, I must

do it. My marriage is suffering, I'm on way too many narcs, and I still have

terrible pain. I think partly my situation has been aggravated over the years by

my mistrust of MD's (as a nurse) and the

fact that I just kept sucking up the pain, until I topped out.

Need to rest now.

Debbie

Beverlee <bea_simmons@...> wrote:

Hi Michele,

I am interested in your story. What type surgery did you have in the 50's? I,

too, have a C curve and it seems we are in the minority. Did you have a gradual

increase in shortness of breath? I'm 56, so not far behind you in age. I had my

curve fused at the age of 45.

I don't make it on line everyday and unfortunately answered a note from Debbie

earlier tonight that I included questions in that she had already addressed in

later notes. I say this to apologize to her (Debbie) if she is still reading the

posts, and to tell you that if you get a chance to answer my note and don't hear

back from me for days, I am interested in your answer.

I feel I had to have the fusion when I did. As far as future surgery, my medical

dr made the comment last year that I am still " young " and that I have years and

years ahead to consider surgery if my problems get unmanageable. Since I was

told that the scoliosis drs prefer to do fusions before 40, I find that

statement to be unreasonable. However, it was what I wanted and needed to hear

at the time and it allowed me to continue to delay surgery with more peace of

mind. Had you ever been told that more surgery would've helped at any time since

the 50's? And have you been told that future surgery is out of the question with

the pulmonary limitations you now have?

Thanks for adding your perspective. It is helpful to see the many directions

this scoliosis takes us and the outsomes from each choice. I dream of being able

to play hard once again but have accepted the limitations as long as I am not

too terribly disabled.

Bea

Micmb <fordigests@...> wrote:

Debby:

" OH My: You are 2-3 years older than me; you are the

self that had the fusion

that I didn't have and you are having problems. Not

that I wish them on anyone,

noone, but... since I just decided to have this spinal

lower back fusion, I have

been really second-guessing myself about past

therapies, things done and not

done, and Here you are with the fusion I did' have and

you are still

questioning. And hurting. The scoliosis road is long

and winding, and there are

no answers. I see now. Especially us that are a little

older, because 45 years

ago, there were a lot less options. After I stopped

nursing in late 03', due to

the discomfort in my back, I tried to help elders, and

I did. Many. Now my

husband and I are involved in helping one lady. 95 in

Oct, who has a very severe

scoliosis. She is the opposite of me. She curves left

and I curve

right.Margaret. She's a kick. No one ever did anything

for her, surgery-wise.

She didn't have the option. She has told me that she

hasn't had

pain for years. She is pretty crippled but walks well

with a walker. And very

cognizant until this Nov. when she fell. But she makes

me see that its sometimes

not so bad to do nothing. And have no worse outcome,

at least pain wise. She is

95! I hope to live as long. God bless us all.

Debbie "

Debbie: I'm a little bit late in my response...sorry

but that seems to be par for the course for me these

days. I wanted to add some food for thought to your

message (shown above). I'm older than you. In fact,

I may be one of the oldest ones in this

group........63 years old. I have severe idiop. scoli

for which I had surgery (3 of them) back in 1957 and

58....most of you weren't even born then.....lol.

Anyhow, those were the only surgeries I ever had. I

then proceeded to live my life (as I was told). When

I last saw an orthoped. sometime around 2001 or maybe

earlier my C curve was measured at around 110 degrees.

I am also on supplemental O2 for the rest of my life.

My severe scoli has permanently squashed my lungs.

My point to make it short.....to do nothing might mean

you might need O2 like me. Please get examined by a

pulmonary dr. and have tests taken to see how your

breathing is and how good your lungs still are. I

don't mean to frighten anyone but it sure was a shock

for me to hear some 9 years ago that I will have to

drag around an O2 tank for the rest of my life.

Michele

PS. I will be happy to provide more background if you

wish.

__________________________________________________________

Be a better Heartthrob. Get better relationship answers from someone who knows.

Answers - Check it out.

http://answers./dir/?link=list & sid=396545433

[Guest guest]

Hi Debbie, wow, again- your part of the country sounds awesome! I hope you and

your husband get to enjoy a real relaxing time together before your surgery,

I had a question about the expected (according to your surgeon) decrease in

your pain level. And also about the problems that the medications are causing

you. You've mentioned that you are taking way too many pain meds- I guess I

wondered if a pain specialist was doing the prescribing. I take a bus load- or

so it seems to me at times- but have minimal problems. I feel like my pain

clinic is excellent and professional and they have worked so hard with me to get

my pain under control. I know the doses on the meds have a max and I am there

with the methadone so if it, and the Lyrica and the prn morphine, don't take

care of the pain I just have to go to bed and stay there until I am better. I

don't know how long I will ride it out before I start thinking about surgery if

I get down again. The 4 months last winter was about my breaking point, but I'm

back on hold again, like I said earlier. I'm sorry....I'm rambling. Have a

great time away, and if your friends need some house

sitting done again, hmmmmm.......

Let us know how the surgery goes if you get busy and don't get a chance to

write before the 27th. Prayers for you to do well. Beverlee

debbie brickley <debbiebrickley@...> wrote:

Hi. Beverlee, I'm here. I'm in the Santa Cruz area now where we've

gone to do elder care/housesitting for 3 weeks; from here, on Sept 27 I go to

have my surgery. Fantastic beauriful redwoods, a beautiful home, hottub; I am

truly blessed to relax here before my surgery. I must agree that sometimes these

emails run together/get confusing.

I'm not sure what your question is? But I would like you to rephrase it. In my

particular case, I never really had a specialist that I could trust, and didn't

have real problems with my scoliosis til I got to my 50's. Yes, there was an

ortho dr. but not a scoli specialist, that just kept saying, you'll have to

eventually have scoliosis surgery, and you'll know it when it's time. Then the

last time I saw him he said: it's too late, it would be too complicated; but he

wasn't great on communication. I didn't really realize I had a big problem til

this year; I knew I had mild spinal stenosis, but it really all started to get

crazy this spring; when my pain got way out of control. I've been looking at

surgery since then, but now that I found a surgeon I think I can trust, I must

do it. My marriage is suffering, I'm on way too many narcs, and I still have

terrible pain. I think partly my situation has been aggravated over the years by

my mistrust of MD's (as a nurse) and the

fact that I just kept sucking up the pain, until I topped out.

Need to rest now.

Debbie

Beverlee <bea_simmons@...> wrote:

Hi Michele,

I am interested in your story. What type surgery did you have in the 50's? I,

too, have a C curve and it seems we are in the minority. Did you have a gradual

increase in shortness of breath? I'm 56, so not far behind you in age. I had my

curve fused at the age of 45.

I don't make it on line everyday and unfortunately answered a note from Debbie

earlier tonight that I included questions in that she had already addressed in

later notes. I say this to apologize to her (Debbie) if she is still reading the

posts, and to tell you that if you get a chance to answer my note and don't hear

back from me for days, I am interested in your answer.

I feel I had to have the fusion when I did. As far as future surgery, my medical

dr made the comment last year that I am still " young " and that I have years and

years ahead to consider surgery if my problems get unmanageable. Since I was

told that the scoliosis drs prefer to do fusions before 40, I find that

statement to be unreasonable. However, it was what I wanted and needed to hear

at the time and it allowed me to continue to delay surgery with more peace of

mind. Had you ever been told that more surgery would've helped at any time since

the 50's? And have you been told that future surgery is out of the question with

the pulmonary limitations you now have?

Thanks for adding your perspective. It is helpful to see the many directions

this scoliosis takes us and the outsomes from each choice. I dream of being able

to play hard once again but have accepted the limitations as long as I am not

too terribly disabled.

Bea

Micmb <fordigests@...> wrote:

Debby:

" OH My: You are 2-3 years older than me; you are the

self that had the fusion

that I didn't have and you are having problems. Not

that I wish them on anyone,

noone, but... since I just decided to have this spinal

lower back fusion, I have

been really second-guessing myself about past

therapies, things done and not

done, and Here you are with the fusion I did' have and

you are still

questioning. And hurting. The scoliosis road is long

and winding, and there are

no answers. I see now. Especially us that are a little

older, because 45 years

ago, there were a lot less options. After I stopped

nursing in late 03', due to

the discomfort in my back, I tried to help elders, and

I did. Many. Now my

husband and I are involved in helping one lady. 95 in

Oct, who has a very severe

scoliosis. She is the opposite of me. She curves left

and I curve

right.Margaret. She's a kick. No one ever did anything

for her, surgery-wise.

She didn't have the option. She has told me that she

hasn't had

pain for years. She is pretty crippled but walks well

with a walker. And very

cognizant until this Nov. when she fell. But she makes

me see that its sometimes

not so bad to do nothing. And have no worse outcome,

at least pain wise. She is

95! I hope to live as long. God bless us all.

Debbie "

Debbie: I'm a little bit late in my response...sorry

but that seems to be par for the course for me these

days. I wanted to add some food for thought to your

message (shown above). I'm older than you. In fact,

I may be one of the oldest ones in this

group........63 years old. I have severe idiop. scoli

for which I had surgery (3 of them) back in 1957 and

58....most of you weren't even born then.....lol.

Anyhow, those were the only surgeries I ever had. I

then proceeded to live my life (as I was told). When

I last saw an orthoped. sometime around 2001 or maybe

earlier my C curve was measured at around 110 degrees.

I am also on supplemental O2 for the rest of my life.

My severe scoli has permanently squashed my lungs.

My point to make it short.....to do nothing might mean

you might need O2 like me. Please get examined by a

pulmonary dr. and have tests taken to see how your

breathing is and how good your lungs still are. I

don't mean to frighten anyone but it sure was a shock

for me to hear some 9 years ago that I will have to

drag around an O2 tank for the rest of my life.

Michele

PS. I will be happy to provide more background if you

wish.

__________________________________________________________

Be a better Heartthrob. Get better relationship answers from someone who knows.

Answers - Check it out.

http://answers./dir/?link=list & sid=396545433

[Guest guest]

Thanks for writing, Bev; it's a great place to be and a nice spot to relax

before the surgery. My pain med regime is regulated by my G.P.; I live in a

small town and there aren't any real pain specialists: last spring, he started

me on Duragesic patches (Fentanyl) and I supplemented with vicodin and a little

methadone and some soma etc. You know, there is nothing to really kill nerve

pain which is what I have. It's the worst a night or when I lie down to take a

nap. I don't know what Lyrica is. But all these meds make me sleepy and kinda

buzzy and forgetful and just different than I used to be. I'd like to live my

life off of most of them. Is your pain nerve pain or muscular pain; they are

really different?

Thanks for writing. I have tons of time to write back here. Hope your space

is good today.

Debbie

Beverlee <bea_simmons@...> wrote:

Hi Debbie, wow, again- your part of the country sounds awesome! I hope

you and your husband get to enjoy a real relaxing time together before your

surgery,

I had a question about the expected (according to your surgeon) decrease in your

pain level. And also about the problems that the medications are causing you.

You've mentioned that you are taking way too many pain meds- I guess I wondered

if a pain specialist was doing the prescribing. I take a bus load- or so it

seems to me at times- but have minimal problems. I feel like my pain clinic is

excellent and professional and they have worked so hard with me to get my pain

under control. I know the doses on the meds have a max and I am there with the

methadone so if it, and the Lyrica and the prn morphine, don't take care of the

pain I just have to go to bed and stay there until I am better. I don't know how

long I will ride it out before I start thinking about surgery if I get down

again. The 4 months last winter was about my breaking point, but I'm back on

hold again, like I said earlier. I'm sorry....I'm rambling. Have a great time

away, and if your friends need some house

sitting done again, hmmmmm.......

Let us know how the surgery goes if you get busy and don't get a chance to write

before the 27th. Prayers for you to do well. Beverlee

debbie brickley <debbiebrickley@...> wrote:

Hi. Beverlee, I'm here. I'm in the Santa Cruz area now where we've gone to do

elder care/housesitting for 3 weeks; from here, on Sept 27 I go to have my

surgery. Fantastic beauriful redwoods, a beautiful home, hottub; I am truly

blessed to relax here before my surgery. I must agree that sometimes these

emails run together/get confusing.

I'm not sure what your question is? But I would like you to rephrase it. In my

particular case, I never really had a specialist that I could trust, and didn't

have real problems with my scoliosis til I got to my 50's. Yes, there was an

ortho dr. but not a scoli specialist, that just kept saying, you'll have to

eventually have scoliosis surgery, and you'll know it when it's time. Then the

last time I saw him he said: it's too late, it would be too complicated; but he

wasn't great on communication. I didn't really realize I had a big problem til

this year; I knew I had mild spinal stenosis, but it really all started to get

crazy this spring; when my pain got way out of control. I've been looking at

surgery since then, but now that I found a surgeon I think I can trust, I must

do it. My marriage is suffering, I'm on way too many narcs, and I still have

terrible pain. I think partly my situation has been aggravated over the years by

my mistrust of MD's (as a nurse) and the

fact that I just kept sucking up the pain, until I topped out.

Need to rest now.

Debbie

Beverlee <bea_simmons@...> wrote:

Hi Michele,

I am interested in your story. What type surgery did you have in the 50's? I,

too, have a C curve and it seems we are in the minority. Did you have a gradual

increase in shortness of breath? I'm 56, so not far behind you in age. I had my

curve fused at the age of 45.

I don't make it on line everyday and unfortunately answered a note from Debbie

earlier tonight that I included questions in that she had already addressed in

later notes. I say this to apologize to her (Debbie) if she is still reading the

posts, and to tell you that if you get a chance to answer my note and don't hear

back from me for days, I am interested in your answer.

I feel I had to have the fusion when I did. As far as future surgery, my medical

dr made the comment last year that I am still " young " and that I have years and

years ahead to consider surgery if my problems get unmanageable. Since I was

told that the scoliosis drs prefer to do fusions before 40, I find that

statement to be unreasonable. However, it was what I wanted and needed to hear

at the time and it allowed me to continue to delay surgery with more peace of

mind. Had you ever been told that more surgery would've helped at any time since

the 50's? And have you been told that future surgery is out of the question with

the pulmonary limitations you now have?

Thanks for adding your perspective. It is helpful to see the many directions

this scoliosis takes us and the outsomes from each choice. I dream of being able

to play hard once again but have accepted the limitations as long as I am not

too terribly disabled.

Bea

Micmb <fordigests@...> wrote:

Debby:

" OH My: You are 2-3 years older than me; you are the

self that had the fusion

that I didn't have and you are having problems. Not

that I wish them on anyone,

noone, but... since I just decided to have this spinal

lower back fusion, I have

been really second-guessing myself about past

therapies, things done and not

done, and Here you are with the fusion I did' have and

you are still

questioning. And hurting. The scoliosis road is long

and winding, and there are

no answers. I see now. Especially us that are a little

older, because 45 years

ago, there were a lot less options. After I stopped

nursing in late 03', due to

the discomfort in my back, I tried to help elders, and

I did. Many. Now my

husband and I are involved in helping one lady. 95 in

Oct, who has a very severe

scoliosis. She is the opposite of me. She curves left

and I curve

right.Margaret. She's a kick. No one ever did anything

for her, surgery-wise.

She didn't have the option. She has told me that she

hasn't had

pain for years. She is pretty crippled but walks well

with a walker. And very

cognizant until this Nov. when she fell. But she makes

me see that its sometimes

not so bad to do nothing. And have no worse outcome,

at least pain wise. She is

95! I hope to live as long. God bless us all.

Debbie "

Debbie: I'm a little bit late in my response...sorry

but that seems to be par for the course for me these

days. I wanted to add some food for thought to your

message (shown above). I'm older than you. In fact,

I may be one of the oldest ones in this

group........63 years old. I have severe idiop. scoli

for which I had surgery (3 of them) back in 1957 and

58....most of you weren't even born then.....lol.

Anyhow, those were the only surgeries I ever had. I

then proceeded to live my life (as I was told). When

I last saw an orthoped. sometime around 2001 or maybe

earlier my C curve was measured at around 110 degrees.

I am also on supplemental O2 for the rest of my life.

My severe scoli has permanently squashed my lungs.

My point to make it short.....to do nothing might mean

you might need O2 like me. Please get examined by a

pulmonary dr. and have tests taken to see how your

breathing is and how good your lungs still are. I

don't mean to frighten anyone but it sure was a shock

for me to hear some 9 years ago that I will have to

drag around an O2 tank for the rest of my life.

Michele

PS. I will be happy to provide more background if you

wish.

__________________________________________________________

Be a better Heartthrob. Get better relationship answers from someone who knows.

Answers - Check it out.

http://answers./dir/?link=list & sid=396545433

[Guest guest]

Hi Debbie, As much as I want to visit the rest of the country- it used to be the

world, but travel has become so complicated I have narrowed that down to this

beautiful country- I love where I live and can't imagine wanting to be anywhere

else long term. Maybe that's because I've always been in the southeast :0) . We

also live in a tiny town, actually community because we have no store. It is 4-5

hours to get to Myrtle Beach or Hilton Head or ton. It is less than 2

hours to get to the mountains. I realize when you said you hoped my space was

good today you weren't meaning the geography! lol- I seem to want to talk about

that in every note! But we are close enough to cities that I have access to pain

clinics in several places. I have been at the same one since it was the one my

insurance covered from work. I got lucky- it is great. An hour drive but I am

fortunate to have friends and /or family who are always glad to drive for me so

I can lean my seat back. I really

am blessed!

Lyrica is specifically for nerve pain. I didn't realize how much of my pain

was nerve pain until I started on it. I occasionally have muscle spasms and

pain, but for the most part it is nerve pain and a horrible deep bone pain that

is my most severe pain. I don't take muscle relaxants nearly as much as the pain

specialist recommends because of how flexaril makes me feel. I was on soma but

the pain specialists are hesitant to give that out anymore because of problems

with it- it had something to do with addiction issues. The nurse practitioner

assured me she could talk with the dr and he would give it to me if I needed it

but it was not that important to me and I want to stay on as little as possible.

I don't know of a single dr in this area who would prescribe what I need who is

not a pain specialist. So I'm glad you have one who is sympathetic. My nerve

pain is a deep burning in my thighs and at times in my calves. With Lyrica it is

important to start with a low dose and

gradually increase. A friend had a GP start on a very high dose and she had

major problems with balance, memory and even slurring her words. I have memory

problems- remembering names and things like short term memory. But it has helped

SO much that I will deal with that. My internal med dr explained that Lyrica is

used for seizures and because it works in nerve impulses that it is impossible

to tell it which nerve impulses to slow. I've had a pretty busy week, meaning on

my feet a lot. There is such a fine line for me- what is enough to keep my

muscles strong and prevent the pain and stiffness that comes from inactivity and

how much causes the bad pain from too much pressure on the problem areas. I

rested all afternoon yesterday and yet I had pain that was worrisome last night-

the bone pain in my butt and the burning in my thighs. I did some things in the

house this AM and as I am lying down now the pain is getting more pronounced. It

looks like a rest-of-the-day-down

kind of afternoon. But I love to read, if I can stay awake, and it is a cloudy

day and should rain this afternoon. So I would say my space is good! I'll soak

in a bath, take however much morphine I need to break the pain cycle, or lessen

the pain, and enjoy the rest of the day. Are you staying in your relaxing place

for the 10 days until surgery? Wherever, have a wonderful rest. Bea

debbie brickley <debbiebrickley@...> wrote:

Thanks for writing, Bev; it's a great place to be and a nice spot to

relax before the surgery. My pain med regime is regulated by my G.P.; I live in

a small town and there aren't any real pain specialists: last spring, he started

me on Duragesic patches (Fentanyl) and I supplemented with vicodin and a little

methadone and some soma etc. You know, there is nothing to really kill nerve

pain which is what I have. It's the worst a night or when I lie down to take a

nap. I don't know what Lyrica is. But all these meds make me sleepy and kinda

buzzy and forgetful and just different than I used to be. I'd like to live my

life off of most of them. Is your pain nerve pain or muscular pain; they are

really different?

Thanks for writing. I have tons of time to write back here. Hope your space is

good today.

Debbie

Beverlee <bea_simmons@...> wrote:

Hi Debbie, wow, again- your part of the country sounds awesome! I hope you and

your husband get to enjoy a real relaxing time together before your surgery,

I had a question about the expected (according to your surgeon) decrease in your

pain level. And also about the problems that the medications are causing you.

You've mentioned that you are taking way too many pain meds- I guess I wondered

if a pain specialist was doing the prescribing. I take a bus load- or so it

seems to me at times- but have minimal problems. I feel like my pain clinic is

excellent and professional and they have worked so hard with me to get my pain

under control. I know the doses on the meds have a max and I am there with the

methadone so if it, and the Lyrica and the prn morphine, don't take care of the

pain I just have to go to bed and stay there until I am better. I don't know how

long I will ride it out before I start thinking about surgery if I get down

again. The 4 months last winter was about my breaking point, but I'm back on

hold again, like I said earlier. I'm sorry....I'm rambling. Have a great time

away, and if your friends need some house

sitting done again, hmmmmm.......

Let us know how the surgery goes if you get busy and don't get a chance to write

before the 27th. Prayers for you to do well. Beverlee

debbie brickley <debbiebrickley@...> wrote:

Hi. Beverlee, I'm here. I'm in the Santa Cruz area now where we've gone to do

elder care/housesitting for 3 weeks; from here, on Sept 27 I go to have my

surgery. Fantastic beauriful redwoods, a beautiful home, hottub; I am truly

blessed to relax here before my surgery. I must agree that sometimes these

emails run together/get confusing.

I'm not sure what your question is? But I would like you to rephrase it. In my

particular case, I never really had a specialist that I could trust, and didn't

have real problems with my scoliosis til I got to my 50's. Yes, there was an

ortho dr. but not a scoli specialist, that just kept saying, you'll have to

eventually have scoliosis surgery, and you'll know it when it's time. Then the

last time I saw him he said: it's too late, it would be too complicated; but he

wasn't great on communication. I didn't really realize I had a big problem til

this year; I knew I had mild spinal stenosis, but it really all started to get

crazy this spring; when my pain got way out of control. I've been looking at

surgery since then, but now that I found a surgeon I think I can trust, I must

do it. My marriage is suffering, I'm on way too many narcs, and I still have

terrible pain. I think partly my situation has been aggravated over the years by

my mistrust of MD's (as a nurse) and the

fact that I just kept sucking up the pain, until I topped out.

Need to rest now.

Debbie

Beverlee <bea_simmons@...> wrote:

Hi Michele,

I am interested in your story. What type surgery did you have in the 50's? I,

too, have a C curve and it seems we are in the minority. Did you have a gradual

increase in shortness of breath? I'm 56, so not far behind you in age. I had my

curve fused at the age of 45.

I don't make it on line everyday and unfortunately answered a note from Debbie

earlier tonight that I included questions in that she had already addressed in

later notes. I say this to apologize to her (Debbie) if she is still reading the

posts, and to tell you that if you get a chance to answer my note and don't hear

back from me for days, I am interested in your answer.

I feel I had to have the fusion when I did. As far as future surgery, my medical

dr made the comment last year that I am still " young " and that I have years and

years ahead to consider surgery if my problems get unmanageable. Since I was

told that the scoliosis drs prefer to do fusions before 40, I find that

statement to be unreasonable. However, it was what I wanted and needed to hear

at the time and it allowed me to continue to delay surgery with more peace of

mind. Had you ever been told that more surgery would've helped at any time since

the 50's? And have you been told that future surgery is out of the question with

the pulmonary limitations you now have?

Thanks for adding your perspective. It is helpful to see the many directions

this scoliosis takes us and the outsomes from each choice. I dream of being able

to play hard once again but have accepted the limitations as long as I am not

too terribly disabled.

Bea

Micmb <fordigests@...> wrote:

Debby:

" OH My: You are 2-3 years older than me; you are the

self that had the fusion

that I didn't have and you are having problems. Not

that I wish them on anyone,

noone, but... since I just decided to have this spinal

lower back fusion, I have

been really second-guessing myself about past

therapies, things done and not

done, and Here you are with the fusion I did' have and

you are still

questioning. And hurting. The scoliosis road is long

and winding, and there are

no answers. I see now. Especially us that are a little

older, because 45 years

ago, there were a lot less options. After I stopped

nursing in late 03', due to

the discomfort in my back, I tried to help elders, and

I did. Many. Now my

husband and I are involved in helping one lady. 95 in

Oct, who has a very severe

scoliosis. She is the opposite of me. She curves left

and I curve

right.Margaret. She's a kick. No one ever did anything

for her, surgery-wise.

She didn't have the option. She has told me that she

hasn't had

pain for years. She is pretty crippled but walks well

with a walker. And very

cognizant until this Nov. when she fell. But she makes

me see that its sometimes

not so bad to do nothing. And have no worse outcome,

at least pain wise. She is

95! I hope to live as long. God bless us all.

Debbie "

Debbie: I'm a little bit late in my response...sorry

but that seems to be par for the course for me these

days. I wanted to add some food for thought to your

message (shown above). I'm older than you. In fact,

I may be one of the oldest ones in this

group........63 years old. I have severe idiop. scoli

for which I had surgery (3 of them) back in 1957 and

58....most of you weren't even born then.....lol.

Anyhow, those were the only surgeries I ever had. I

then proceeded to live my life (as I was told). When

I last saw an orthoped. sometime around 2001 or maybe

earlier my C curve was measured at around 110 degrees.

I am also on supplemental O2 for the rest of my life.

My severe scoli has permanently squashed my lungs.

My point to make it short.....to do nothing might mean

you might need O2 like me. Please get examined by a

pulmonary dr. and have tests taken to see how your

breathing is and how good your lungs still are. I

don't mean to frighten anyone but it sure was a shock

for me to hear some 9 years ago that I will have to

drag around an O2 tank for the rest of my life.

Michele

PS. I will be happy to provide more background if you

wish.

__________________________________________________________

Be a better Heartthrob. Get better relationship answers from someone who knows.

Answers - Check it out.

http://answers./dir/?link=list & sid=396545433

[Guest guest]

Hi Bea,

Wow- am I with you there on the versed. Prior to GERD surgergy I had

it before endoscopy & of course 1st thing before the surgery. These

were done in different hospitals, diff drs, diff towns but all

interconnected. I had told both groups about how it took a lot to

sedate me, but I knew they were thinking " yeah, we hear that all the

time " & just placating me. So when it comes to be, they both

said, " I've never seen anyone not react to such an amt. " And I

absolutely hate it when I hear that. Sometimes it's almost like

they're accusing you of something. Other times they seem empathetic.

As the doc was removing the endo tube from diagnosing the GERD I was

fully alert. He was just shaking his head as he walked out of the

room. He was a good one, though. He gave me enough stuff that I was

at least out for the procedure.

I came to before they extubated me after the surg for the GERD & was

fighting to breathe as they did it. That was an awful feeling.

When I had a transverse esoph. echo the doc didn't medicate me

enough. This was after my stroke, when they were checking to see if

there was a hole the reg. echo didn't show. Also after surg for the

GERD, so that area was extra tight. I wasn't even in a " twilight "

place. So, I've got the endo tube down my throat & I'm trying to

indicate to the doc that I need more meds & he's telling me to stop

moving. I'm grabbing at the nurse & everything. I was able to see the

monitor & the blood backflow, heard everything they said, the whole

thing. Afterwards, I complained all the way up the ladder to the

president & repeated everything verbatim. The only thing anyone ever

said to me was, " you shouldn't have been able to feel that, etc " A

few days later I was talking to a nurse friend of mine from my

hometown (I was in hospital 1 hr away) & she had been a cardiac nurse

for this doc. All she said was he was an ass. I concurred completely.

I liked what you said about somehow feeling yourself or others

feeling that if you are taking fewer meds that you are in a " better "

place. I've judged myself that way...probably because others have

judged me that way.

My hands are shaky today, can't hardly keep them on the keys. Don't

know why...

Moonbeam

> Debby:

>

> " OH My: You are 2-3 years older than me; you are the

> self that had the fusion

> that I didn't have and you are having problems. Not

> that I wish them on anyone,

> noone, but... since I just decided to have this spinal

> lower back fusion, I have

> been really second-guessing myself about past

> therapies, things done and not

> done, and Here you are with the fusion I did' have and

> you are still

> questioning. And hurting. The scoliosis road is long

> and winding, and there are

> no answers. I see now. Especially us that are a little

> older, because 45 years

> ago, there were a lot less options. After I stopped

> nursing in late 03', due to

> the discomfort in my back, I tried to help elders, and

> I did. Many. Now my

> husband and I are involved in helping one lady. 95 in

> Oct, who has a very severe

> scoliosis. She is the opposite of me. She curves left

> and I curve

> right.Margaret. She's a kick. No one ever did anything

> for her, surgery-wise.

> She didn't have the option. She has told me that she

> hasn't had

> pain for years. She is pretty crippled but walks well

> with a walker. And very

> cognizant until this Nov. when she fell. But she makes

> me see that its sometimes

> not so bad to do nothing. And have no worse outcome,

> at least pain wise. She is

> 95! I hope to live as long. God bless us all.

> Debbie "

>

> Debbie: I'm a little bit late in my response...sorry

> but that seems to be par for the course for me these

> days. I wanted to add some food for thought to your

> message (shown above). I'm older than you. In fact,

> I may be one of the oldest ones in this

> group........63 years old. I have severe idiop. scoli

> for which I had surgery (3 of them) back in 1957 and

> 58....most of you weren't even born then.....lol.

> Anyhow, those were the only surgeries I ever had. I

> then proceeded to live my life (as I was told). When

> I last saw an orthoped. sometime around 2001 or maybe

> earlier my C curve was measured at around 110 degrees.

> I am also on supplemental O2 for the rest of my life.

> My severe scoli has permanently squashed my lungs.

> My point to make it short.....to do nothing might mean

> you might need O2 like me. Please get examined by a

> pulmonary dr. and have tests taken to see how your

> breathing is and how good your lungs still are. I

> don't mean to frighten anyone but it sure was a shock

> for me to hear some 9 years ago that I will have to

> drag around an O2 tank for the rest of my life.

>

> Michele

>

> PS. I will be happy to provide more background if you

> wish.

>

> __________________________________________________________

> Be a better Heartthrob. Get better relationship answers from

someone who knows. Answers - Check it out.

> http://answers./dir/?link=list & sid=396545433

>

>

[Guest guest]

Can I ask all of your opinion that if you could have

done your surgery at 18 vs. 45's and 50's would you

have done that and what do you think the difference

would have been for you negative or positive? Thanks.

--- Beverlee <bea_simmons@...> wrote:

> Hi Michele,

>

> I am interested in your story. What type surgery

> did you have in the 50's? I, too, have a C curve and

> it seems we are in the minority. Did you have a

> gradual increase in shortness of breath? I'm 56, so

> not far behind you in age. I had my curve fused at

> the age of 45.

>

> I don't make it on line everyday and unfortunately

> answered a note from Debbie earlier tonight that I

> included questions in that she had already addressed

> in later notes. I say this to apologize to her

> (Debbie) if she is still reading the posts, and to

> tell you that if you get a chance to answer my note

> and don't hear back from me for days, I am

> interested in your answer.

> I feel I had to have the fusion when I did. As far

> as future surgery, my medical dr made the comment

> last year that I am still " young " and that I have

> years and years ahead to consider surgery if my

> problems get unmanageable. Since I was told that the

> scoliosis drs prefer to do fusions before 40, I find

> that statement to be unreasonable. However, it was

> what I wanted and needed to hear at the time and it

> allowed me to continue to delay surgery with more

> peace of mind. Had you ever been told that more

> surgery would've helped at any time since the 50's?

> And have you been told that future surgery is out of

> the question with the pulmonary limitations you now

> have?

> Thanks for adding your perspective. It is helpful

> to see the many directions this scoliosis takes us

> and the outsomes from each choice. I dream of being

> able to play hard once again but have accepted the

> limitations as long as I am not too terribly

> disabled.

> Bea

>

> Micmb <fordigests@...> wrote:

> Debby:

>

> " OH My: You are 2-3 years older than me; you are the

> self that had the fusion

> that I didn't have and you are having problems. Not

> that I wish them on anyone,

> noone, but... since I just decided to have this

> spinal

> lower back fusion, I have

> been really second-guessing myself about past

> therapies, things done and not

> done, and Here you are with the fusion I did' have

> and

> you are still

> questioning. And hurting. The scoliosis road is long

> and winding, and there are

> no answers. I see now. Especially us that are a

> little

> older, because 45 years

> ago, there were a lot less options. After I stopped

> nursing in late 03', due to

> the discomfort in my back, I tried to help elders,

> and

> I did. Many. Now my

> husband and I are involved in helping one lady. 95

> in

> Oct, who has a very severe

> scoliosis. She is the opposite of me. She curves

> left

> and I curve

> right.Margaret. She's a kick. No one ever did

> anything

> for her, surgery-wise.

> She didn't have the option. She has told me that she

> hasn't had

> pain for years. She is pretty crippled but walks

> well

> with a walker. And very

> cognizant until this Nov. when she fell. But she

> makes

> me see that its sometimes

> not so bad to do nothing. And have no worse outcome,

> at least pain wise. She is

> 95! I hope to live as long. God bless us all.

> Debbie "

>

> Debbie: I'm a little bit late in my response...sorry

> but that seems to be par for the course for me these

> days. I wanted to add some food for thought to your

> message (shown above). I'm older than you. In fact,

> I may be one of the oldest ones in this

> group........63 years old. I have severe idiop.

> scoli

> for which I had surgery (3 of them) back in 1957 and

> 58....most of you weren't even born then.....lol.

> Anyhow, those were the only surgeries I ever had. I

> then proceeded to live my life (as I was told). When

> I last saw an orthoped. sometime around 2001 or

> maybe

> earlier my C curve was measured at around 110

> degrees.

> I am also on supplemental O2 for the rest of my

> life.

> My severe scoli has permanently squashed my lungs.

> My point to make it short.....to do nothing might

> mean

> you might need O2 like me. Please get examined by a

> pulmonary dr. and have tests taken to see how your

> breathing is and how good your lungs still are. I

> don't mean to frighten anyone but it sure was a

> shock

> for me to hear some 9 years ago that I will have to

> drag around an O2 tank for the rest of my life.

>

> Michele

>

> PS. I will be happy to provide more background if

> you

> wish.

>

>

__________________________________________________________

> Be a better Heartthrob. Get better relationship

> answers from someone who knows. Answers -

> Check it out.

>

http://answers./dir/?link=list & sid=396545433

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Tonight's top picks. What will you watch tonight? Preview the hottest shows on

TV.

http://tv./

[Guest guest]

I had my surgery at age 66, anterior and posterior correction. I would gladly

have had the surgery at an earlier age if I could have found a doctor who would

do it. The worst advice I ever received was, " don't ever let anyone operate on

your back. " The best advice I ever received was, " keep exercising. " I think my

recovery would have been easier and quicker had I been younger. I am very lucky

that I do not have the pain that some of you have endured, and I think that is

remarkable since I had 15 vertebrae fused. I stopped taking pain medication

(Darvocet) about one month after surgery. I do have numbness in my feet. And I

did have a problem with blood clots about one month after surgery. I am looking

forward to my one-year anniversary since surgery on October 3.

I would say there is no benefit to waiting, and it is much easier to recover

when you are younger. No doubt about it, this is a very difficult surgery. And

you want to be in the hands of a highly skilled surgeon who has made spinal

deformity correction his life's work.

Patti

Re: New to the group

Can I ask all of your opinion that if you could have

done your surgery at 18 vs. 45's and 50's would you

have done that and what do you think the difference

would have been for you negative or positive? Thanks.

--- Beverlee <bea_simmons@...> wrote:

> Hi Michele,

>

> I am interested in your story. What type surgery

> did you have in the 50's? I, too, have a C curve and

> it seems we are in the minority. Did you have a

> gradual increase in shortness of breath? I'm 56, so

> not far behind you in age. I had my curve fused at

> the age of 45.

>

> I don't make it on line everyday and unfortunately

> answered a note from Debbie earlier tonight that I

> included questions in that she had already addressed

> in later notes. I say this to apologize to her

> (Debbie) if she is still reading the posts, and to

> tell you that if you get a chance to answer my note

> and don't hear back from me for days, I am

> interested in your answer.

> I feel I had to have the fusion when I did. As far

> as future surgery, my medical dr made the comment

> last year that I am still " young " and that I have

> years and years ahead to consider surgery if my

> problems get unmanageable. Since I was told that the

> scoliosis drs prefer to do fusions before 40, I find

> that statement to be unreasonable. However, it was

> what I wanted and needed to hear at the time and it

> allowed me to continue to delay surgery with more

> peace of mind. Had you ever been told that more

> surgery would've helped at any time since the 50's?

> And have you been told that future surgery is out of

> the question with the pulmonary limitations you now

> have?

> Thanks for adding your perspective. It is helpful

> to see the many directions this scoliosis takes us

> and the outsomes from each choice. I dream of being

> able to play hard once again but have accepted the

> limitations as long as I am not too terribly

> disabled.

> Bea

>

> Micmb <fordigests@...> wrote:

> Debby:

>

> " OH My: You are 2-3 years older than me; you are the

> self that had the fusion

> that I didn't have and you are having problems. Not

> that I wish them on anyone,

> noone, but... since I just decided to have this

> spinal

> lower back fusion, I have

> been really second-guessing myself about past

> therapies, things done and not

> done, and Here you are with the fusion I did' have

> and

> you are still

> questioning. And hurting. The scoliosis road is long

> and winding, and there are

> no answers. I see now. Especially us that are a

> little

> older, because 45 years

> ago, there were a lot less options. After I stopped

> nursing in late 03', due to

> the discomfort in my back, I tried to help elders,

> and

> I did. Many. Now my

> husband and I are involved in helping one lady. 95

> in

> Oct, who has a very severe

> scoliosis. She is the opposite of me. She curves

> left

> and I curve

> right.Margaret. She's a kick. No one ever did

> anything

> for her, surgery-wise.

> She didn't have the option. She has told me that she

> hasn't had

> pain for years. She is pretty crippled but walks

> well

> with a walker. And very

> cognizant until this Nov. when she fell. But she

> makes

> me see that its sometimes

> not so bad to do nothing. And have no worse outcome,

> at least pain wise. She is

> 95! I hope to live as long. God bless us all.

> Debbie "

>

> Debbie: I'm a little bit late in my response...sorry

> but that seems to be par for the course for me these

> days. I wanted to add some food for thought to your

> message (shown above). I'm older than you. In fact,

> I may be one of the oldest ones in this

> group........63 years old. I have severe idiop.

> scoli

> for which I had surgery (3 of them) back in 1957 and

> 58....most of you weren't even born then.....lol.

> Anyhow, those were the only surgeries I ever had. I

> then proceeded to live my life (as I was told). When

> I last saw an orthoped. sometime around 2001 or

> maybe

> earlier my C curve was measured at around 110

> degrees.

> I am also on supplemental O2 for the rest of my

> life.

> My severe scoli has permanently squashed my lungs.

> My point to make it short.....to do nothing might

> mean

> you might need O2 like me. Please get examined by a

> pulmonary dr. and have tests taken to see how your

> breathing is and how good your lungs still are. I

> don't mean to frighten anyone but it sure was a

> shock

> for me to hear some 9 years ago that I will have to

> drag around an O2 tank for the rest of my life.

>

> Michele

>

> PS. I will be happy to provide more background if

> you

> wish.

>

>

__________________________________________________________

> Be a better Heartthrob. Get better relationship

> answers from someone who knows. Answers -

> Check it out.

>

http://answers./dir/?link=list & sid=396545433

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________________

Tonight's top picks. What will you watch tonight? Preview the hottest shows on

TV.

http://tv./

[Guest guest]

Hi Gail,

I am not new to the group but have been a long time lurker. )

I am 55, have 70 degree lumbar scoliosis and have never had treatment

or surgery and today am content with my decision. Unless a medical

emergency arises I never plan to have surgery as I feel I would be

trading one kind of pain for another.

My life has been limited for sure and I was left out of a lot of

activities when my childrne were growing up. I have used Motrin 800

for years for the osteoarthritis of my spine but that was it till

last year when I started having muscle spasms in in inner thighs so

now take a relaxant for that when I need it..which is sporatic.

This year I have started having numbness and tingling in the same

places where the spasms occur and I find I must spend my

days 'sitting and then doing'.

What I feel has and does help me most is that I sleep on a water bed.

It is warm, it is fully supportive and I get good rest though I

seldom can sleep on my sides much.

But I am telling you more than you asked...excuse me.

I wanted everyone to know how much I have appreciated there sharing

in letting me know I am not alone in this world...coping as we do.

Maybe now I will participate from time to time... )

Ama

> > Debby:

> >

> > " OH My: You are 2-3 years older than me; you are the

> > self that had the fusion

> > that I didn't have and you are having problems. Not

> > that I wish them on anyone,

> > noone, but... since I just decided to have this

> > spinal

> > lower back fusion, I have

> > been really second-guessing myself about past

> > therapies, things done and not

> > done, and Here you are with the fusion I did' have

> > and

> > you are still

> > questioning. And hurting. The scoliosis road is long

> > and winding, and there are

> > no answers. I see now. Especially us that are a

> > little

> > older, because 45 years

> > ago, there were a lot less options. After I stopped

> > nursing in late 03', due to

> > the discomfort in my back, I tried to help elders,

> > and

> > I did. Many. Now my

> > husband and I are involved in helping one lady. 95

> > in

> > Oct, who has a very severe

> > scoliosis. She is the opposite of me. She curves

> > left

> > and I curve

> > right.Margaret. She's a kick. No one ever did

> > anything

> > for her, surgery-wise.

> > She didn't have the option. She has told me that she

> > hasn't had

> > pain for years. She is pretty crippled but walks

> > well

> > with a walker. And very

> > cognizant until this Nov. when she fell. But she

> > makes

> > me see that its sometimes

> > not so bad to do nothing. And have no worse outcome,

> > at least pain wise. She is

> > 95! I hope to live as long. God bless us all.

> > Debbie "

> >

> > Debbie: I'm a little bit late in my response...sorry

> > but that seems to be par for the course for me these

> > days. I wanted to add some food for thought to your

> > message (shown above). I'm older than you. In fact,

> > I may be one of the oldest ones in this

> > group........63 years old. I have severe idiop.

> > scoli

> > for which I had surgery (3 of them) back in 1957 and

> > 58....most of you weren't even born then.....lol.

> > Anyhow, those were the only surgeries I ever had. I

> > then proceeded to live my life (as I was told). When

> > I last saw an orthoped. sometime around 2001 or

> > maybe

> > earlier my C curve was measured at around 110

> > degrees.

> > I am also on supplemental O2 for the rest of my

> > life.

> > My severe scoli has permanently squashed my lungs.

> > My point to make it short.....to do nothing might

> > mean

> > you might need O2 like me. Please get examined by a

> > pulmonary dr. and have tests taken to see how your

> > breathing is and how good your lungs still are. I

> > don't mean to frighten anyone but it sure was a

> > shock

> > for me to hear some 9 years ago that I will have to

> > drag around an O2 tank for the rest of my life.

> >

> > Michele

> >

> > PS. I will be happy to provide more background if

> > you

> > wish.

> >

> >

> __________________________________________________________

> > Be a better Heartthrob. Get better relationship

> > answers from someone who knows. Answers -

> > Check it out.

> >

> http://answers./dir/?link=list & sid=396545433

> >

> >

> >

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

>

>

______________________________________________________________________

______________

> Tonight's top picks. What will you watch tonight? Preview the

hottest shows on TV.

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>

[Guest guest]

I just want to say thank you to everyone in this group

with being so patient with my questions. I know I

have not been a contributor but someone taking from

the group in asking all these questions. I have not

personally been through what you have and my son has

not had his surgery to have that experience be a way

for me to be of some benefit to all of you. I am

biding my time until December when I will go back to

the original doctor and one more new one and then will

make the final decision, with my son making the

decision as well. You are all in my thoughts and

prayers and I wish you the very best quality of life,

within the limitations you present. Gail

--- astillvoice <Falconess3@...> wrote:

> Hi Gail,

> I am not new to the group but have been a long time

> lurker. )

> I am 55, have 70 degree lumbar scoliosis and have

> never had treatment

> or surgery and today am content with my decision.

> Unless a medical

> emergency arises I never plan to have surgery as I

> feel I would be

> trading one kind of pain for another.

> My life has been limited for sure and I was left out

> of a lot of

> activities when my childrne were growing up. I have

> used Motrin 800

> for years for the osteoarthritis of my spine but

> that was it till

> last year when I started having muscle spasms in in

> inner thighs so

> now take a relaxant for that when I need it..which

> is sporatic.

> This year I have started having numbness and

> tingling in the same

> places where the spasms occur and I find I must

> spend my

> days 'sitting and then doing'.

> What I feel has and does help me most is that I

> sleep on a water bed.

> It is warm, it is fully supportive and I get good

> rest though I

> seldom can sleep on my sides much.

>

> But I am telling you more than you asked...excuse

> me.

> I wanted everyone to know how much I have

> appreciated there sharing

> in letting me know I am not alone in this

> world...coping as we do.

>

> Maybe now I will participate from time to time...

> )

>

> Ama

>

>

> > > Debby:

> > >

> > > " OH My: You are 2-3 years older than me; you are

> the

> > > self that had the fusion

> > > that I didn't have and you are having problems.

> Not

> > > that I wish them on anyone,

> > > noone, but... since I just decided to have this

> > > spinal

> > > lower back fusion, I have

> > > been really second-guessing myself about past

> > > therapies, things done and not

> > > done, and Here you are with the fusion I did'

> have

> > > and

> > > you are still

> > > questioning. And hurting. The scoliosis road is

> long

> > > and winding, and there are

> > > no answers. I see now. Especially us that are a

> > > little

> > > older, because 45 years

> > > ago, there were a lot less options. After I

> stopped

> > > nursing in late 03', due to

> > > the discomfort in my back, I tried to help

> elders,

> > > and

> > > I did. Many. Now my

> > > husband and I are involved in helping one lady.

> 95

> > > in

> > > Oct, who has a very severe

> > > scoliosis. She is the opposite of me. She curves

> > > left

> > > and I curve

> > > right.Margaret. She's a kick. No one ever did

> > > anything

> > > for her, surgery-wise.

> > > She didn't have the option. She has told me that

> she

> > > hasn't had

> > > pain for years. She is pretty crippled but walks

> > > well

> > > with a walker. And very

> > > cognizant until this Nov. when she fell. But she

> > > makes

> > > me see that its sometimes

> > > not so bad to do nothing. And have no worse

> outcome,

> > > at least pain wise. She is

> > > 95! I hope to live as long. God bless us all.

> > > Debbie "

> > >

> > > Debbie: I'm a little bit late in my

> response...sorry

> > > but that seems to be par for the course for me

> these

> > > days. I wanted to add some food for thought to

> your

> > > message (shown above). I'm older than you. In

> fact,

> > > I may be one of the oldest ones in this

> > > group........63 years old. I have severe idiop.

> > > scoli

> > > for which I had surgery (3 of them) back in 1957

> and

> > > 58....most of you weren't even born

> then.....lol.

> > > Anyhow, those were the only surgeries I ever

> had. I

> > > then proceeded to live my life (as I was told).

> When

> > > I last saw an orthoped. sometime around 2001 or

> > > maybe

> > > earlier my C curve was measured at around 110

> > > degrees.

> > > I am also on supplemental O2 for the rest of my

>

=== message truncated ===

________________________________________________________________________________\

____

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[Guest guest]

Hi Patti,

I couldn't agree with you more about the importance of exercising. My

goal has always been to keep moving.

I wondered what types of exercise the members here do?

I do a tai chi warm-up every morning and ride my recumbent 20-40

minutes every other day. On the days I am not riding I do 2-10 minute

walks out on our trails with a cane.

I still do all my own housework but am finding using the vacuum more

difficult.

Congratulations with the positive outcome of your surgery.

Do you feel it has improved your health and your everyday life?

I always feel blessed at the full life I have had with my scoliosis

and that fact that my pain has always been manageable with rest etc.

Doing what is best for oneself is what brings more peace with our

condition.

Take care,

Ama

>

> I had my surgery at age 66, anterior and posterior correction. I

would gladly have had the surgery at an earlier age if I could have

found a doctor who would do it. The worst advice I ever received

was, " don't ever let anyone operate on your back. " The best advice I

ever received was, " keep exercising. " I think my recovery would have

been easier and quicker had I been younger. I am very lucky that I do

not have the pain that some of you have endured, and I think that is

remarkable since I had 15 vertebrae fused. I stopped taking pain

medication (Darvocet) about one month after surgery. I do have

numbness in my feet. And I did have a problem with blood clots about

one month after surgery. I am looking forward to my one-year

anniversary since surgery on October 3.

>

> I would say there is no benefit to waiting, and it is much easier

to recover when you are younger. No doubt about it, this is a very

difficult surgery. And you want to be in the hands of a highly

skilled surgeon who has made spinal deformity correction his life's

work.

>

> Patti

[Guest guest]

>

> Can I ask all of your opinion that if you could have

> done your surgery at 18 vs. 45's and 50's would you

> have done that and what do you think the difference

> would have been for you negative or positive? Thanks.

I'm not in my 40s or 50s yet! But my scoli doc has told me that there's

no reason to wait. His explanation is that a younger spine/back heals

faster because the muscles and spine are more flexible. Also there is

less risk for complication from blood loss, heart troubles, arthritis,

degeneration, etc.

I think that I bounced back quickly from my first surgery in my teens

and I expect that my second will take longer because it is more intense

and the bones/muscles are more set (in my 20s).

[Guest guest]

do you think that all people have to have second

surgeries even if they have the first at a young age?

--- lepetitpapier01 <alabrie@...> wrote:

>

> >

> > Can I ask all of your opinion that if you could

> have

> > done your surgery at 18 vs. 45's and 50's would

> you

> > have done that and what do you think the

> difference

> > would have been for you negative or positive?

> Thanks.

>

> I'm not in my 40s or 50s yet! But my scoli doc has

> told me that there's

> no reason to wait. His explanation is that a younger

> spine/back heals

> faster because the muscles and spine are more

> flexible. Also there is

> less risk for complication from blood loss, heart

> troubles, arthritis,

> degeneration, etc.

>

> I think that I bounced back quickly from my first

> surgery in my teens

> and I expect that my second will take longer because

> it is more intense

> and the bones/muscles are more set (in my 20s).

>

>

________________________________________________________________________________\

____

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[Guest guest]

>

> do you think that all people have to have second

> surgeries even if they have the first at a young age?

I don't think so. I know a handful of people who had scoliosis

surgery in high school as well, (I met them later in college or

through work) and I am the only one I know who is having a second

surgery. Of the people I have met, they each had one curve in lumbar

or thoracic, and had hardware implanted.

I am having a second surgery, and everyone is a little horrified when

they hear that. I have double major sigmoid scoliosis. For my first

surgery, the goal was to stabilize the lower curve that was blowing

out of proportion (since my curves were evenly balanced most of my

life) due to a break in my lumbar spine that was causing the

vertabrae to slip. There was no hardware implanted and we were told

even then that if the scoli got worse they would need to go in and

attach hardware and correct the scoli. We watched my back for appx. 5

years and thought we were out of the woods and that my back was

stable. Then in one year, the upper curve has blown out of

proportion. It is now the reason for my second surgery.

From what I have read, most surgeries after the initial scoli surgery

arise from complications with the hardware, i.e. removing hardware

altogether or replacing a piece that has shifted or broken.

[Guest guest]

Hi Moonbeam,

Your experience sounds horrible! I've never had anything where I remember

being awake while something was being done, but I have developed a real fear of

there being a mess up with anesthesia and being completely awake during surgery.

I happened to see 2 programs about that back when I was considering having

revision surgery and it had me stressed, to say the least! They had two

solutions- with one they kept a tourniquet on one arm that prevented the

medication that paralyzes the body from reaching that hand. The patient could

wave to the dr if he/she woke up and needed more sedation. The second solution

used a monitor on brain waves, but the accuracy of that was questioned. The

people they interviewed were awake for all or most of surgery and had never

recovered emotionally, as I can only imagine. When I was working we would

sometimes keep a patient paralyzed. Of course they were on the ventilator and we

were supposed to be sure they were also asleep. Occasionally a dr

would not order enough sedation and I would be furious- same horror- lying

there unable to even scratch an itch and wide awake! When I woke up after the 12

hour back surgery I believed that I had only had 1/2 the surgery and that they

needed to flip me over and start on the back. Actually they had done it all and

like you I was still tubed. In my case I didn't feel like I was smothering. I

was afraid actually that I would forget to breath after extubated! They kept

yelling at me that I was going to have to breathe and I didn't want any extra

chores to keep up with at the moment other than just live!

I guess all of us pain patients have so many negative labels put on us by

society that we can't help but hear some of it and react. I hate the mess that

abusers cause legit pain patients, like making drs so afraid to cover pain. I

feel so bad for the people who live too far from a pain clinic to get good

treatment. I appreciate the understanding that I get from you and others here at

this group. It helps to know that other people understand that I'm not a 'drug

addict' and a bad person because I need these narcotics to have a good life!

Thank you for writing and sharing! Bea

moonbeamblessings <moonbeamblessings@...> wrote:

Hi Bea,

Wow- am I with you there on the versed. Prior to GERD surgergy I had

it before endoscopy & of course 1st thing before the surgery. These

were done in different hospitals, diff drs, diff towns but all

interconnected. I had told both groups about how it took a lot to

sedate me, but I knew they were thinking " yeah, we hear that all the

time " & just placating me. So when it comes to be, they both

said, " I've never seen anyone not react to such an amt. " And I

absolutely hate it when I hear that. Sometimes it's almost like

they're accusing you of something. Other times they seem empathetic.

As the doc was removing the endo tube from diagnosing the GERD I was

fully alert. He was just shaking his head as he walked out of the

room. He was a good one, though. He gave me enough stuff that I was

at least out for the procedure.

I came to before they extubated me after the surg for the GERD & was

fighting to breathe as they did it. That was an awful feeling.

When I had a transverse esoph. echo the doc didn't medicate me

enough. This was after my stroke, when they were checking to see if

there was a hole the reg. echo didn't show. Also after surg for the

GERD, so that area was extra tight. I wasn't even in a " twilight "

place. So, I've got the endo tube down my throat & I'm trying to

indicate to the doc that I need more meds & he's telling me to stop

moving. I'm grabbing at the nurse & everything. I was able to see the

monitor & the blood backflow, heard everything they said, the whole

thing. Afterwards, I complained all the way up the ladder to the

president & repeated everything verbatim. The only thing anyone ever

said to me was, " you shouldn't have been able to feel that, etc " A

few days later I was talking to a nurse friend of mine from my

hometown (I was in hospital 1 hr away) & she had been a cardiac nurse

for this doc. All she said was he was an ass. I concurred completely.

I liked what you said about somehow feeling yourself or others

feeling that if you are taking fewer meds that you are in a " better "

place. I've judged myself that way...probably because others have

judged me that way.

My hands are shaky today, can't hardly keep them on the keys. Don't

know why...

Moonbeam

> Debby:

>

> " OH My: You are 2-3 years older than me; you are the

> self that had the fusion

> that I didn't have and you are having problems. Not

> that I wish them on anyone,

> noone, but... since I just decided to have this spinal

> lower back fusion, I have

> been really second-guessing myself about past

> therapies, things done and not

> done, and Here you are with the fusion I did' have and

> you are still

> questioning. And hurting. The scoliosis road is long

> and winding, and there are

> no answers. I see now. Especially us that are a little

> older, because 45 years

> ago, there were a lot less options. After I stopped

> nursing in late 03', due to

> the discomfort in my back, I tried to help elders, and

> I did. Many. Now my

> husband and I are involved in helping one lady. 95 in

> Oct, who has a very severe

> scoliosis. She is the opposite of me. She curves left

> and I curve

> right.Margaret. She's a kick. No one ever did anything

> for her, surgery-wise.

> She didn't have the option. She has told me that she

> hasn't had

> pain for years. She is pretty crippled but walks well

> with a walker. And very

> cognizant until this Nov. when she fell. But she makes

> me see that its sometimes

> not so bad to do nothing. And have no worse outcome,

> at least pain wise. She is

> 95! I hope to live as long. God bless us all.

> Debbie "

>

> Debbie: I'm a little bit late in my response...sorry

> but that seems to be par for the course for me these

> days. I wanted to add some food for thought to your

> message (shown above). I'm older than you. In fact,

> I may be one of the oldest ones in this

> group........63 years old. I have severe idiop. scoli

> for which I had surgery (3 of them) back in 1957 and

> 58....most of you weren't even born then.....lol.

> Anyhow, those were the only surgeries I ever had. I

> then proceeded to live my life (as I was told). When

> I last saw an orthoped. sometime around 2001 or maybe

> earlier my C curve was measured at around 110 degrees.

> I am also on supplemental O2 for the rest of my life.

> My severe scoli has permanently squashed my lungs.

> My point to make it short.....to do nothing might mean

> you might need O2 like me. Please get examined by a

> pulmonary dr. and have tests taken to see how your

> breathing is and how good your lungs still are. I

> don't mean to frighten anyone but it sure was a shock

> for me to hear some 9 years ago that I will have to

> drag around an O2 tank for the rest of my life.

>

> Michele

>

> PS. I will be happy to provide more background if you

> wish.

>

> __________________________________________________________

> Be a better Heartthrob. Get better relationship answers from

someone who knows. Answers - Check it out.

> http://answers./dir/?link=list & sid=396545433

>

>

[Guest guest]

Hi Gail,

My curve progressed so much over the years and had not caused me any problems

until after I got into my 40's. So, to answer your question, I'm sure I might

have done better had I had treamtent at an earlier age, but the treatments in

the 60's were not nearly as sophiscated as they are today. That makes it harder

to say- if the doctors knew then what they know now, yes to earlier surgery. But

I had a lot of good years, including 2 pregnancies that went well, before I had

surgery so I have no regrets. Not a clear answer but the best I can do :0) ! Bea

Gail Merri <p0etiss@...> wrote:

Can I ask all of your opinion that if you could have

done your surgery at 18 vs. 45's and 50's would you

have done that and what do you think the difference

would have been for you negative or positive? Thanks.

--- Beverlee <bea_simmons@...> wrote:

> Hi Michele,

>

> I am interested in your story. What type surgery

> did you have in the 50's? I, too, have a C curve and

> it seems we are in the minority. Did you have a

> gradual increase in shortness of breath? I'm 56, so

> not far behind you in age. I had my curve fused at

> the age of 45.

>

> I don't make it on line everyday and unfortunately

> answered a note from Debbie earlier tonight that I

> included questions in that she had already addressed

> in later notes. I say this to apologize to her

> (Debbie) if she is still reading the posts, and to

> tell you that if you get a chance to answer my note

> and don't hear back from me for days, I am

> interested in your answer.

> I feel I had to have the fusion when I did. As far

> as future surgery, my medical dr made the comment

> last year that I am still " young " and that I have

> years and years ahead to consider surgery if my

> problems get unmanageable. Since I was told that the

> scoliosis drs prefer to do fusions before 40, I find

> that statement to be unreasonable. However, it was

> what I wanted and needed to hear at the time and it

> allowed me to continue to delay surgery with more

> peace of mind. Had you ever been told that more

> surgery would've helped at any time since the 50's?

> And have you been told that future surgery is out of

> the question with the pulmonary limitations you now

> have?

> Thanks for adding your perspective. It is helpful

> to see the many directions this scoliosis takes us

> and the outsomes from each choice. I dream of being

> able to play hard once again but have accepted the

> limitations as long as I am not too terribly

> disabled.

> Bea

>

> Micmb <fordigests@...> wrote:

> Debby:

>

> " OH My: You are 2-3 years older than me; you are the

> self that had the fusion

> that I didn't have and you are having problems. Not

> that I wish them on anyone,

> noone, but... since I just decided to have this

> spinal

> lower back fusion, I have

> been really second-guessing myself about past

> therapies, things done and not

> done, and Here you are with the fusion I did' have

> and

> you are still

> questioning. And hurting. The scoliosis road is long

> and winding, and there are

> no answers. I see now. Especially us that are a

> little

> older, because 45 years

> ago, there were a lot less options. After I stopped

> nursing in late 03', due to

> the discomfort in my back, I tried to help elders,

> and

> I did. Many. Now my

> husband and I are involved in helping one lady. 95

> in

> Oct, who has a very severe

> scoliosis. She is the opposite of me. She curves

> left

> and I curve

> right.Margaret. She's a kick. No one ever did

> anything

> for her, surgery-wise.

> She didn't have the option. She has told me that she

> hasn't had

> pain for years. She is pretty crippled but walks

> well

> with a walker. And very

> cognizant until this Nov. when she fell. But she

> makes

> me see that its sometimes

> not so bad to do nothing. And have no worse outcome,

> at least pain wise. She is

> 95! I hope to live as long. God bless us all.

> Debbie "

>

> Debbie: I'm a little bit late in my response...sorry

> but that seems to be par for the course for me these

> days. I wanted to add some food for thought to your

> message (shown above). I'm older than you. In fact,

> I may be one of the oldest ones in this

> group........63 years old. I have severe idiop.

> scoli

> for which I had surgery (3 of them) back in 1957 and

> 58....most of you weren't even born then.....lol.

> Anyhow, those were the only surgeries I ever had. I

> then proceeded to live my life (as I was told). When

> I last saw an orthoped. sometime around 2001 or

> maybe

> earlier my C curve was measured at around 110

> degrees.

> I am also on supplemental O2 for the rest of my

> life.

> My severe scoli has permanently squashed my lungs.

> My point to make it short.....to do nothing might

> mean

> you might need O2 like me. Please get examined by a

> pulmonary dr. and have tests taken to see how your

> breathing is and how good your lungs still are. I

> don't mean to frighten anyone but it sure was a

> shock

> for me to hear some 9 years ago that I will have to

> drag around an O2 tank for the rest of my life.

>

> Michele

>

> PS. I will be happy to provide more background if

> you

> wish.

>

>

__________________________________________________________

> Be a better Heartthrob. Get better relationship

> answers from someone who knows. Answers -

> Check it out.

>

http://answers./dir/?link=list & sid=396545433

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________________

Tonight's top picks. What will you watch tonight? Preview the hottest shows on

TV.

http://tv./

[Guest guest]

Hi Ama!

I'm glad you came out of lurking! :0) How long have you used a water bed? And

has anyone out there tried one of the sleep number beds? I had thought a water

bed would not be enough support. Can you vary the firmness on it? (Probably a

dumb question, but I've never tried even sitting on one). The mattress thing has

been a big, expensive deal for us. We now have a firm mattress with a feather

bed on top. A softer mattress caused me a lot of pain but adding the feathers on

top helped with the aches and pains in my joints. With a broken rod and fusion,

if I sleep on a too-soft surface I have seemed to actually have the fusion feel

unstable, resulting in severe pain.

Thanks for your help, Bea

astillvoice <Falconess3@...> wrote:

Hi Gail,

I am not new to the group but have been a long time lurker. )

I am 55, have 70 degree lumbar scoliosis and have never had treatment

or surgery and today am content with my decision. Unless a medical

emergency arises I never plan to have surgery as I feel I would be

trading one kind of pain for another.

My life has been limited for sure and I was left out of a lot of

activities when my childrne were growing up. I have used Motrin 800

for years for the osteoarthritis of my spine but that was it till

last year when I started having muscle spasms in in inner thighs so

now take a relaxant for that when I need it..which is sporatic.

This year I have started having numbness and tingling in the same

places where the spasms occur and I find I must spend my

days 'sitting and then doing'.

What I feel has and does help me most is that I sleep on a water bed.

It is warm, it is fully supportive and I get good rest though I

seldom can sleep on my sides much.

But I am telling you more than you asked...excuse me.

I wanted everyone to know how much I have appreciated there sharing

in letting me know I am not alone in this world...coping as we do.

Maybe now I will participate from time to time... )

Ama

> > Debby:

> >

> > " OH My: You are 2-3 years older than me; you are the

> > self that had the fusion

> > that I didn't have and you are having problems. Not

> > that I wish them on anyone,

> > noone, but... since I just decided to have this

> > spinal

> > lower back fusion, I have

> > been really second-guessing myself about past

> > therapies, things done and not

> > done, and Here you are with the fusion I did' have

> > and

> > you are still

> > questioning. And hurting. The scoliosis road is long

> > and winding, and there are

> > no answers. I see now. Especially us that are a

> > little

> > older, because 45 years

> > ago, there were a lot less options. After I stopped

> > nursing in late 03', due to

> > the discomfort in my back, I tried to help elders,

> > and

> > I did. Many. Now my

> > husband and I are involved in helping one lady. 95

> > in

> > Oct, who has a very severe

> > scoliosis. She is the opposite of me. She curves

> > left

> > and I curve

> > right.Margaret. She's a kick. No one ever did

> > anything

> > for her, surgery-wise.

> > She didn't have the option. She has told me that she

> > hasn't had

> > pain for years. She is pretty crippled but walks

> > well

> > with a walker. And very

> > cognizant until this Nov. when she fell. But she

> > makes

> > me see that its sometimes

> > not so bad to do nothing. And have no worse outcome,

> > at least pain wise. She is

> > 95! I hope to live as long. God bless us all.

> > Debbie "

> >

> > Debbie: I'm a little bit late in my response...sorry

> > but that seems to be par for the course for me these

> > days. I wanted to add some food for thought to your

> > message (shown above). I'm older than you. In fact,

> > I may be one of the oldest ones in this

> > group........63 years old. I have severe idiop.

> > scoli

> > for which I had surgery (3 of them) back in 1957 and

> > 58....most of you weren't even born then.....lol.

> > Anyhow, those were the only surgeries I ever had. I

> > then proceeded to live my life (as I was told). When

> > I last saw an orthoped. sometime around 2001 or

> > maybe

> > earlier my C curve was measured at around 110

> > degrees.

> > I am also on supplemental O2 for the rest of my

> > life.

> > My severe scoli has permanently squashed my lungs.

> > My point to make it short.....to do nothing might

> > mean

> > you might need O2 like me. Please get examined by a

> > pulmonary dr. and have tests taken to see how your

> > breathing is and how good your lungs still are. I

> > don't mean to frighten anyone but it sure was a

> > shock

> > for me to hear some 9 years ago that I will have to

> > drag around an O2 tank for the rest of my life.

> >

> > Michele

> >

> > PS. I will be happy to provide more background if

> > you

> > wish.

> >

> >

> __________________________________________________________

> > Be a better Heartthrob. Get better relationship

> > answers from someone who knows. Answers -

> > Check it out.

> >

> http://answers./dir/?link=list & sid=396545433

> >

> >

> >

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

>

>

__________________________________________________________

______________

> Tonight's top picks. What will you watch tonight? Preview the

hottest shows on TV.

> http://tv./

>

[Guest guest]

Hi again Ama,

The robot vacuum, roomba, does a pretty good job! I had to work to get all the

loose cords up off the floor because 'he' (I named mine Benson) will pull lamps

down off tables. I have also just gotten the Swivel Sweeper, advertised on TV.

It does a good job for quick clean up and lets me put off " big " vacuuming much

longer. Several of my friends have gotten roombas since we did and everyone is

very pleased with that. I got mine on eBay and it was refurbished. I've never

had any trouble with it.

It is a blessing every day that we can stay active. Like you I have to do

short walks. I have a recumbant bike but I have not used mine for a couple of

years. It seemed to cause me pain, but I think I tried to compete with myself to

do more each time, rather than being content with adequate time to keep strong.

I've been thinking about trying it again. Not today- I'm in bed today so I'm

catching up on email. I have a hard time drawing the line on my activities. If

I'm having a good day I will over do, which is what I did the last 2 days. But I

feel so blessed to have the days where I am able to do a lot, even if I do have

to be down afterwards.

Bea

astillvoice <Falconess3@...> wrote:

Hi Patti,

I couldn't agree with you more about the importance of exercising. My

goal has always been to keep moving.

I wondered what types of exercise the members here do?

I do a tai chi warm-up every morning and ride my recumbent 20-40

minutes every other day. On the days I am not riding I do 2-10 minute

walks out on our trails with a cane.

I still do all my own housework but am finding using the vacuum more

difficult.

Congratulations with the positive outcome of your surgery.

Do you feel it has improved your health and your everyday life?

I always feel blessed at the full life I have had with my scoliosis

and that fact that my pain has always been manageable with rest etc.

Doing what is best for oneself is what brings more peace with our

condition.

Take care,

Ama

>

> I had my surgery at age 66, anterior and posterior correction. I

would gladly have had the surgery at an earlier age if I could have

found a doctor who would do it. The worst advice I ever received

was, " don't ever let anyone operate on your back. " The best advice I

ever received was, " keep exercising. " I think my recovery would have

been easier and quicker had I been younger. I am very lucky that I do

not have the pain that some of you have endured, and I think that is

remarkable since I had 15 vertebrae fused. I stopped taking pain

medication (Darvocet) about one month after surgery. I do have

numbness in my feet. And I did have a problem with blood clots about

one month after surgery. I am looking forward to my one-year

anniversary since surgery on October 3.

>

> I would say there is no benefit to waiting, and it is much easier

to recover when you are younger. No doubt about it, this is a very

difficult surgery. And you want to be in the hands of a highly

skilled surgeon who has made spinal deformity correction his life's

work.

>

> Patti

[Guest guest]

thanks for the information. Do you know if there is

any change in the kind of hardware they use now vs.

when you had hardware in and if it will still break

over time?

--- lepetitpapier01 <alabrie@...> wrote:

>

> >

> > do you think that all people have to have second

> > surgeries even if they have the first at a young

> age?

>

>

> I don't think so. I know a handful of people who had

> scoliosis

> surgery in high school as well, (I met them later in

> college or

> through work) and I am the only one I know who is

> having a second

> surgery. Of the people I have met, they each had one

> curve in lumbar

> or thoracic, and had hardware implanted.

>

> I am having a second surgery, and everyone is a

> little horrified when

> they hear that. I have double major sigmoid

> scoliosis. For my first

> surgery, the goal was to stabilize the lower curve

> that was blowing

> out of proportion (since my curves were evenly

> balanced most of my

> life) due to a break in my lumbar spine that was

> causing the

> vertabrae to slip. There was no hardware implanted

> and we were told

> even then that if the scoli got worse they would

> need to go in and

> attach hardware and correct the scoli. We watched my

> back for appx. 5

> years and thought we were out of the woods and that

> my back was

> stable. Then in one year, the upper curve has blown

> out of

> proportion. It is now the reason for my second

> surgery.

>

> From what I have read, most surgeries after the

> initial scoli surgery

> arise from complications with the hardware, i.e.

> removing hardware

> altogether or replacing a piece that has shifted or

> broken.

>

>

________________________________________________________________________________\

____

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

lay it on us. http://surveylink./gmrs/_panel_invite.asp?a=7

[Guest guest]

Hi Bea, )

The mattress thing was a big ordeal for back until we got our 1st

waterbed back about 1981. Persoanlly, it has been a lifesaver for me.

No matter what I can always find a comfortable position and the heat is

very soothing for my arthritic spine. Last year the heater went and we

were surprised at how poorly made the one we bought was. Slowly

waterbed supplies are becoming obsolete, which worries me. My daughter

has a sleep system similar to the number bed you were asking about and

she loves it. No, she doesn't have scoliosis...thankfully none of my 3

do...but we have decioded when the time comes that's what we will buy.

I can identify with the too soft bed vs. too hard and it sounds like

you found a good middle place. ) Real Rest for our bodies is so

important.

Last year we remodeled the bathroom and my husband had a difficult time

finding a tub that didn't have a high lumbar support in it. No one with

scoliosis could recline and relax in those tubs but finally one was

found.

And we bought an explorer last year that I thought the seats were

comfortable..but they are not. Our old van was perfect as the seat was

more concave and had a adjustble lumbar button.

Oh, and let us not even talk about finding clothing. )

Ama

>

> Hi Ama!

> I'm glad you came out of lurking! :0) How long have you used a

water bed? And has anyone out there tried one of the sleep number beds?

I had thought a water bed would not be enough support. Can you vary the

firmness on it? (Probably a dumb question, but I've never tried even

sitting on one). The mattress thing has been a big, expensive deal for

us. We now have a firm mattress with a feather bed on top. A softer

mattress caused me a lot of pain but adding the feathers on top helped

with the aches and pains in my joints. With a broken rod and fusion, if

I sleep on a too-soft surface I have seemed to actually have the fusion

feel unstable, resulting in severe pain.

> Thanks for your help, Bea

>

[Guest guest]

Hello Bea,

I hope you are back on your feet today. )

Again, I know of what you speak. Summers are painful for me..I

usually work one day and then take a day off. Whe Autumn hits I feel

like a new woman. Last week I was busy and productive for 4 days and

then bam..I was overcome with exhaustion and backache. Took 2 days to

recover but I am ready to go again today. )

I agree..it is a blessing to stay active.

The Roomba, my son and his wife have too and they love it. I will

consider it down the line.

We are slowly removing all carpet from the house and putting in wood

floors. I can then dustmop and buy a little sweeper for area rugs.

I'm sorry your recumbent causes you pain but we are all so diffierent.

When I could do other exercises I thought the recumbent was boring

but now that it is somehting I can do without pain I enjoy it.

I still have the Yoga for Scoliosis to try..I have only owned it for

a year now and only watched it. (

Anyone have any other ways of exercising with scoliosis?

Ama

>

> Hi again Ama,

> The robot vacuum, roomba, does a pretty good job! I had to work

to get all the loose cords up off the floor because 'he' (I named

mine Benson) will pull lamps down off tables. I have also just gotten

the Swivel Sweeper, advertised on TV. It does a good job for quick

clean up and lets me put off " big " vacuuming much longer. Several of

my friends have gotten roombas since we did and everyone is very

pleased with that. I got mine on eBay and it was refurbished. I've

never had any trouble with it.

> It is a blessing every day that we can stay active. Like you I

have to do short walks. I have a recumbant bike but I have not used

mine for a couple of years. It seemed to cause me pain, but I think I

tried to compete with myself to do more each time, rather than being

content with adequate time to keep strong. I've been thinking about

trying it again. Not today- I'm in bed today so I'm catching up on

email. I have a hard time drawing the line on my activities. If I'm

having a good day I will over do, which is what I did the last 2

days. But I feel so blessed to have the days where I am able to do a

lot, even if I do have to be down afterwards.

> Bea

[Guest guest]

Hi Ama,

I had not thought about it before, but I do not remember the last time I saw

an ad for a waterbed! I guess that is out for us, then. I always hear the horror

stories, probably mostly made up, where they leaked. I kind of wish our mattress

wasn't so new! :0) I would check into the sleep number system. If they can be

made really firm I would for sure want to try it. Thank you for your

information, Bea

astillvoice <Falconess3@...> wrote:

Hi Bea, )

The mattress thing was a big ordeal for back until we got our 1st

waterbed back about 1981. Persoanlly, it has been a lifesaver for me.

No matter what I can always find a comfortable position and the heat is

very soothing for my arthritic spine. Last year the heater went and we

were surprised at how poorly made the one we bought was. Slowly

waterbed supplies are becoming obsolete, which worries me. My daughter

has a sleep system similar to the number bed you were asking about and

she loves it. No, she doesn't have scoliosis...thankfully none of my 3

do...but we have decioded when the time comes that's what we will buy.

I can identify with the too soft bed vs. too hard and it sounds like

you found a good middle place. ) Real Rest for our bodies is so

important.

Last year we remodeled the bathroom and my husband had a difficult time

finding a tub that didn't have a high lumbar support in it. No one with

scoliosis could recline and relax in those tubs but finally one was

found.

And we bought an explorer last year that I thought the seats were

comfortable..but they are not. Our old van was perfect as the seat was

more concave and had a adjustble lumbar button.

Oh, and let us not even talk about finding clothing. )

Ama

>

> Hi Ama!

> I'm glad you came out of lurking! :0) How long have you used a

water bed? And has anyone out there tried one of the sleep number beds?

I had thought a water bed would not be enough support. Can you vary the

firmness on it? (Probably a dumb question, but I've never tried even

sitting on one). The mattress thing has been a big, expensive deal for

us. We now have a firm mattress with a feather bed on top. A softer

mattress caused me a lot of pain but adding the feathers on top helped

with the aches and pains in my joints. With a broken rod and fusion, if

I sleep on a too-soft surface I have seemed to actually have the fusion

feel unstable, resulting in severe pain.

> Thanks for your help, Bea

>

[Guest guest]

Hi again Ama, :0)

You are so kind.... I am semi-up the last 2 days. I guess most of us know how

that is. As far as floor care, we have hardwood or tile everywhere, with a few

area rugs. That is by far easiest to me. The Swivel Sweeper does a pretty good

job on that type floor, whereas a Dirt Devil rechargeable sweeper just sent the

dirt scattering! We have 3 inside dogs and one cat, so we have plenty of grit

and dirt to deal with.

I hope you have a great weekend, Bea

astillvoice <Falconess3@...> wrote:

Hello Bea,

I hope you are back on your feet today. )

Again, I know of what you speak. Summers are painful for me..I

usually work one day and then take a day off. Whe Autumn hits I feel

like a new woman. Last week I was busy and productive for 4 days and

then bam..I was overcome with exhaustion and backache. Took 2 days to

recover but I am ready to go again today. )

I agree..it is a blessing to stay active.

The Roomba, my son and his wife have too and they love it. I will

consider it down the line.

We are slowly removing all carpet from the house and putting in wood

floors. I can then dustmop and buy a little sweeper for area rugs.

I'm sorry your recumbent causes you pain but we are all so diffierent.

When I could do other exercises I thought the recumbent was boring

but now that it is somehting I can do without pain I enjoy it.

I still have the Yoga for Scoliosis to try..I have only owned it for

a year now and only watched it. (

Anyone have any other ways of exercising with scoliosis?

Ama

>

> Hi again Ama,

> The robot vacuum, roomba, does a pretty good job! I had to work

to get all the loose cords up off the floor because 'he' (I named

mine Benson) will pull lamps down off tables. I have also just gotten

the Swivel Sweeper, advertised on TV. It does a good job for quick

clean up and lets me put off " big " vacuuming much longer. Several of

my friends have gotten roombas since we did and everyone is very

pleased with that. I got mine on eBay and it was refurbished. I've

never had any trouble with it.

> It is a blessing every day that we can stay active. Like you I

have to do short walks. I have a recumbant bike but I have not used

mine for a couple of years. It seemed to cause me pain, but I think I

tried to compete with myself to do more each time, rather than being

content with adequate time to keep strong. I've been thinking about

trying it again. Not today- I'm in bed today so I'm catching up on

email. I have a hard time drawing the line on my activities. If I'm

having a good day I will over do, which is what I did the last 2

days. But I feel so blessed to have the days where I am able to do a

lot, even if I do have to be down afterwards.

> Bea

[Guest guest]

No, not all people have to have 2nd surgeries when they have the first one

young. I had to have a 2nd because the first one was too short, the spine

continued to progress around it. Jolene

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