RE: Re: Hi there Janice

[Guest guest]

Janice, Your not boring me in the least, I appreciate hearing about you and your

life. I am so sorry about you losing Nick, it must have been heartwrenching -

and at the same time as your Dad. I don't know what I would do if I lost my

husband who has stuck with me through all the surgeries and the illness I've

had. It sounds providential that an old friend has moved close to you. I hope

his surgery is completely successful. I recently had a kidney removed because it

developed an abscess following my pancreatectomy and don't miss it at all- would

never know it's gone. I'll keep my fingers crossed that the C hasn't spread!

I realize I'll always need pain meds, though I hate being dependent on the

docs to provide them. I truly am concerned that when I have the revision, which

involves breaking my line of fusions from L2-S1, that they won't medicate me

enough due to my tolerance and I'll be in horrific pain. I was in mind numbing,

screaming pain before my pancreatectomy and don't ever want to experience that

again. I currently have the pain in my legs that I described to you and pain at

the disc level above my L2-S1 fusions and below my C1-C7 line of fusions. I also

get killer HA's from all the cervical fusions, I think. My bladder and bowels

don't work normally either. I guess that's due to the arachnoiditis. I would not

be able to function without the meds I'm on and am grateful to have them, I just

want to get to the lowest level I can tolerate so I can be easily medicated

after the revision surgery. I do think I was under medicated for years and it

caused me to become a recluse. My husband and I could never accept inviatations

as I couldn't sit comfortably. I don't want that again as I feel these meds are

allowing me to rebuild a life. I can now walk for exercise and even went to the

Y one day last week with my husband and 14yo daughter and rode the exercycle and

very cautiously used the arm machines, which I know was great for me.

You are so lucky to have your mom, and she is equally lucky to have you.

She sounds quite remarkable to be as active as she is at her age. My parents are

gone and it feels a bit weird to be the " oldest " generation. My husband and I

married in our 30's and adopted two children at a relatively older age. I feel a

bit sad that my kids don't get to grow up with grandparents, as I did. Take

good care of yourself, it's a pleasure to have contact with you. Best, Kate

From: Janice

Sent: Thursday, September 02, 2010 9:42 PM

spinal problems

Subject: Re: Re: Hi there

I no longer work but when I did it was 12 hours a day 6 days a week on my feet

in high heels. I was a manager of a very big restaurant. I had 150 employees and

we were a very busy place in fact we were the busiest place in town. But it

almost killed me. I had been in the restaurant business for over 30 years when I

had to quit. It broke my heart I loved my job and all the people who worked for

me. I had to stop in 1996 due to my fourth surgery. It just did me in then the

Arachnoiditis spread and grew effecting my legs something awful. I was married

to my second husband at the time. We didnt' need my money he made great money

and we had everything in the world. But he didn't like spending his money

supporting me so it fell apart a few years later. I lived with a man named

Nickie and we had dated in high school. Due to money I couldn't marry him but he

was the love of my life. We fit togethter like gloves. I loved him so. He died 2

years ago and I still grieve for him. I always will.

Why do you want to cut back on your meds. Kate you will now and forever need

pain medication. I hear so many talk about addiction I call it a dependency on

my drugs. But I have come to a place in my mind and heart where it doesn't

matter anymore. I have come to realize if I am to live with any quality of life

I need those drugs. I have never felt drugged sleepy or goofy on the drugs I

only feel relief. The way to make them work is to take them on a schedule

whether your hurting or now take your meds. I take 30mg.s of Methadone in the

morning and 20mg.s at night. If I have breakthrough pain I take oxycodone but I

only need it maybe one time a week. Don't let that consume you Kate.What kind of

pain do you have now? Is it in jsut the back or is it in the legs too. I have

severe leg pain at times and my bladder and bowels dont' work so well either. I

feel it won't be long before more starts to happen to me due to a build up of

scar tissue. I cannot have any more surgeries so I hope and pray that it doesn't

get to the point where I can't walk or care for myself.

I live with my 84 year old mother. I care for her since dad died 2 years ago

also he died 2 weeks after Nick died so it's been hard for us both. I promised

dad I would take care of her. She is extremely healthey takes no drugs at all.

She still helps with the housework and the cooking. Lately I have had a friend

of 25 years move back into town and he is alone and my age. I have been helping

him get settled and his house organized. The same day the hosue closed the

doctor called about a scn he had the day before. His left kidney is totally

consumed with a cancerous tumor. They will be removing it with in a few weeks so

when he comes home from the hospital I will care for him until he can do it

himself. He is under a lot of stress right now so I spend a lot of time with him

lately. I pray he will be ok were very special friends who lost touch years ago

but I got in touch with him about a year ago and now he has moved about 6 blocks

from me.

I better get out of here I am probably boring you to death by now. You take care

and we can talk anytime you want to.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they fusions,

diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have had

a bad back since I was 20 in 1970. I have had 5 back surgeries over the years

and to many ESI's to remember. I also have Arachnoiditis a disease caused by

built up scar tissue. It effect the whole lower 1/2 of my body. I see a

wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal with

what is happening to my lower body. This disease effect the legs, feet bowels

and bladder. It's not very selective it will change my life as it gets worse.

> I have learned so much about this disease and back disorders. I hope to learn

more.

> Janice

>

>

[Guest guest]

Kate can I ask why you had part of your pancerous removed? Did you also have an

abcess in it too? I had my gall bladder out a few years ago and that's all the

surgeries I want. It was so enlarged that they had to cut me from jsut below my

breastbone all the way down and through my belly button. The I got a staph

infection. I was in intensive care 8 days and 10 more days in a regular room.

Can you believe it 18 days for what should have been a sipmle gall bladder

surgery. It was also done in a world famous hospital. Loma Univ. in Loma

CA.

I have 3 grown daughters in their early 40's and late 30's. I also have grand

children and one great grandson. It was all pleasure raising my kids they were

good girls. We lived on a ranch where they had everything in the world to do. I

kept them home and busy. Thank God they turned out very well. Since I was 20 I

have had back pain, ruptured discs. The surgeries started at 23 my last one was

about 7 years ago. I am on a lot of drugs right now to thin my blood and keep my

body working the way it should. I also have heart disease along with a couple

of other problems but I try not to let them get me down.

I know what you mean about going out. My husband thought I was crazy because I

could sit in my recliner at home but couldn't sit long enough to have dinner and

conversations after dinner. There were so many things he didn't understand about

me and what was happening to me. He didn't want for me to share any of my

problems with him. To talk about them made them real and he didnt' want to

believe there was anything wrong with me.

I am so grateful for my family and circle of friends I have hand selected

through the years. They at least recognize that I have problems even if you

can't see them. I hope your surgery is sucessfull and the pain is kept at a

minimum for your sake. When will you be having surgery?My pain doctor told me I

needed more surgery but I said no way. If the pain is liveable than I will

remain the way I am. My pain is not that bad right now. If it gets worse then I

might change my mind but my general health is very poor right now and my doctors

said no to any surgery because of my heart and the fact that my blood is so thin

it would probably kill me.

I will go I have loved talking to you so plese anytime you want just sit down

and type.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they fusions,

diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a bad back since I was 20 in 1970. I have had 5 back surgeries over the

years and to many ESI's to remember. I also have Arachnoiditis a disease caused

by built up scar tissue. It effect the whole lower 1/2 of my body. I see a

wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal with

what is happening to my lower body. This disease effect the legs, feet bowels

and bladder. It's not very selective it will change my life as it gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn more.

> Janice

>

>

[Guest guest]

Kate

Do you live in St Louis? I do../

Deb RN

From: spinal problems

[mailto:spinal problems ] On Behalf Of Kate

Carroll

Sent: Friday, September 03, 2010 10:15 AM

spinal problems

Subject: Re: Re: Hi there Janice

Janice, Your not boring me in the least, I appreciate hearing about you and

your life. I am so sorry about you losing Nick, it must have been

heartwrenching - and at the same time as your Dad. I don't know what I would

do if I lost my husband who has stuck with me through all the surgeries and

the illness I've had. It sounds providential that an old friend has moved

close to you. I hope his surgery is completely successful. I recently had a

kidney removed because it developed an abscess following my pancreatectomy

and don't miss it at all- would never know it's gone. I'll keep my fingers

crossed that the C hasn't spread!

I realize I'll always need pain meds, though I hate being dependent on the

docs to provide them. I truly am concerned that when I have the revision,

which involves breaking my line of fusions from L2-S1, that they won't

medicate me enough due to my tolerance and I'll be in horrific pain. I was

in mind numbing, screaming pain before my pancreatectomy and don't ever want

to experience that again. I currently have the pain in my legs that I

described to you and pain at the disc level above my L2-S1 fusions and below

my C1-C7 line of fusions. I also get killer HA's from all the cervical

fusions, I think. My bladder and bowels don't work normally either. I guess

that's due to the arachnoiditis. I would not be able to function without the

meds I'm on and am grateful to have them, I just want to get to the lowest

level I can tolerate so I can be easily medicated after the revision

surgery. I do think I was under medicated for years and it caused me to

become a recluse. My husband and I could never accept inviatations as I

couldn't sit comfortably. I don't want that again as I feel these meds are

allowing me to rebuild a life. I can now walk for exercise and even went to

the Y one day last week with my husband and 14yo daughter and rode the

exercycle and very cautiously used the arm machines, which I know was great

for me.

You are so lucky to have your mom, and she is equally lucky to have you. She

sounds quite remarkable to be as active as she is at her age. My parents are

gone and it feels a bit weird to be the " oldest " generation. My husband and

I married in our 30's and adopted two children at a relatively older age. I

feel a bit sad that my kids don't get to grow up with grandparents, as I

did. Take good care of yourself, it's a pleasure to have contact with you.

Best, Kate

From: Janice

Sent: Thursday, September 02, 2010 9:42 PM

spinal problems

<mailto:spinal problems%40>

Subject: Re: Re: Hi there

I no longer work but when I did it was 12 hours a day 6 days a week on my

feet in high heels. I was a manager of a very big restaurant. I had 150

employees and we were a very busy place in fact we were the busiest place in

town. But it almost killed me. I had been in the restaurant business for

over 30 years when I had to quit. It broke my heart I loved my job and all

the people who worked for me. I had to stop in 1996 due to my fourth

surgery. It just did me in then the Arachnoiditis spread and grew effecting

my legs something awful. I was married to my second husband at the time. We

didnt' need my money he made great money and we had everything in the world.

But he didn't like spending his money supporting me so it fell apart a few

years later. I lived with a man named Nickie and we had dated in high

school. Due to money I couldn't marry him but he was the love of my life. We

fit togethter like gloves. I loved him so. He died 2 years ago and I still

grieve for him. I always will.

Why do you want to cut back on your meds. Kate you will now and forever need

pain medication. I hear so many talk about addiction I call it a dependency

on my drugs. But I have come to a place in my mind and heart where it

doesn't matter anymore. I have come to realize if I am to live with any

quality of life I need those drugs. I have never felt drugged sleepy or

goofy on the drugs I only feel relief. The way to make them work is to take

them on a schedule whether your hurting or now take your meds. I take 30mg.s

of Methadone in the morning and 20mg.s at night. If I have breakthrough pain

I take oxycodone but I only need it maybe one time a week. Don't let that

consume you Kate.What kind of pain do you have now? Is it in jsut the back

or is it in the legs too. I have severe leg pain at times and my bladder and

bowels dont' work so well either. I feel it won't be long before more starts

to happen to me due to a build up of scar tissue. I cannot have any more

surgeries so I hope and pray that it doesn't get to the point where I can't

walk or care for myself.

I live with my 84 year old mother. I care for her since dad died 2 years ago

also he died 2 weeks after Nick died so it's been hard for us both. I

promised dad I would take care of her. She is extremely healthey takes no

drugs at all. She still helps with the housework and the cooking. Lately I

have had a friend of 25 years move back into town and he is alone and my

age. I have been helping him get settled and his house organized. The same

day the hosue closed the doctor called about a scn he had the day before.

His left kidney is totally consumed with a cancerous tumor. They will be

removing it with in a few weeks so when he comes home from the hospital I

will care for him until he can do it himself. He is under a lot of stress

right now so I spend a lot of time with him lately. I pray he will be ok

were very special friends who lost touch years ago but I got in touch with

him about a year ago and now he has moved about 6 blocks from me.

I better get out of here I am probably boring you to death by now. You take

care and we can talk anytime you want to.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they

fusions, diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a bad back since I was 20 in 1970. I have had 5 back surgeries over the

years and to many ESI's to remember. I also have Arachnoiditis a disease

caused by built up scar tissue. It effect the whole lower 1/2 of my body. I

see a wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal

with what is happening to my lower body. This disease effect the legs, feet

bowels and bladder. It's not very selective it will change my life as it

gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn more.

> Janice

>

>

[Guest guest]

Deb, Wish I did as some of the best revision surgeons are there. I may be coming

to St Louis for a second opinion. I live in Chapel Hill, NC. I always enjoy your

informative posts. Thanks, Kate

From: Deb

Sent: Friday, September 03, 2010 12:56 PM

spinal problems

Subject: RE: Re: Hi there Janice

Kate

Do you live in St Louis? I do../

Deb RN

From: spinal problems

[mailto:spinal problems ] On Behalf Of Kate

Carroll

Sent: Friday, September 03, 2010 10:15 AM

spinal problems

Subject: Re: Re: Hi there Janice

Janice, Your not boring me in the least, I appreciate hearing about you and

your life. I am so sorry about you losing Nick, it must have been

heartwrenching - and at the same time as your Dad. I don't know what I would

do if I lost my husband who has stuck with me through all the surgeries and

the illness I've had. It sounds providential that an old friend has moved

close to you. I hope his surgery is completely successful. I recently had a

kidney removed because it developed an abscess following my pancreatectomy

and don't miss it at all- would never know it's gone. I'll keep my fingers

crossed that the C hasn't spread!

I realize I'll always need pain meds, though I hate being dependent on the

docs to provide them. I truly am concerned that when I have the revision,

which involves breaking my line of fusions from L2-S1, that they won't

medicate me enough due to my tolerance and I'll be in horrific pain. I was

in mind numbing, screaming pain before my pancreatectomy and don't ever want

to experience that again. I currently have the pain in my legs that I

described to you and pain at the disc level above my L2-S1 fusions and below

my C1-C7 line of fusions. I also get killer HA's from all the cervical

fusions, I think. My bladder and bowels don't work normally either. I guess

that's due to the arachnoiditis. I would not be able to function without the

meds I'm on and am grateful to have them, I just want to get to the lowest

level I can tolerate so I can be easily medicated after the revision

surgery. I do think I was under medicated for years and it caused me to

become a recluse. My husband and I could never accept inviatations as I

couldn't sit comfortably. I don't want that again as I feel these meds are

allowing me to rebuild a life. I can now walk for exercise and even went to

the Y one day last week with my husband and 14yo daughter and rode the

exercycle and very cautiously used the arm machines, which I know was great

for me.

You are so lucky to have your mom, and she is equally lucky to have you. She

sounds quite remarkable to be as active as she is at her age. My parents are

gone and it feels a bit weird to be the " oldest " generation. My husband and

I married in our 30's and adopted two children at a relatively older age. I

feel a bit sad that my kids don't get to grow up with grandparents, as I

did. Take good care of yourself, it's a pleasure to have contact with you.

Best, Kate

From: Janice

Sent: Thursday, September 02, 2010 9:42 PM

spinal problems

<mailto:spinal problems%40>

Subject: Re: Re: Hi there

I no longer work but when I did it was 12 hours a day 6 days a week on my

feet in high heels. I was a manager of a very big restaurant. I had 150

employees and we were a very busy place in fact we were the busiest place in

town. But it almost killed me. I had been in the restaurant business for

over 30 years when I had to quit. It broke my heart I loved my job and all

the people who worked for me. I had to stop in 1996 due to my fourth

surgery. It just did me in then the Arachnoiditis spread and grew effecting

my legs something awful. I was married to my second husband at the time. We

didnt' need my money he made great money and we had everything in the world.

But he didn't like spending his money supporting me so it fell apart a few

years later. I lived with a man named Nickie and we had dated in high

school. Due to money I couldn't marry him but he was the love of my life. We

fit togethter like gloves. I loved him so. He died 2 years ago and I still

grieve for him. I always will.

Why do you want to cut back on your meds. Kate you will now and forever need

pain medication. I hear so many talk about addiction I call it a dependency

on my drugs. But I have come to a place in my mind and heart where it

doesn't matter anymore. I have come to realize if I am to live with any

quality of life I need those drugs. I have never felt drugged sleepy or

goofy on the drugs I only feel relief. The way to make them work is to take

them on a schedule whether your hurting or now take your meds. I take 30mg.s

of Methadone in the morning and 20mg.s at night. If I have breakthrough pain

I take oxycodone but I only need it maybe one time a week. Don't let that

consume you Kate.What kind of pain do you have now? Is it in jsut the back

or is it in the legs too. I have severe leg pain at times and my bladder and

bowels dont' work so well either. I feel it won't be long before more starts

to happen to me due to a build up of scar tissue. I cannot have any more

surgeries so I hope and pray that it doesn't get to the point where I can't

walk or care for myself.

I live with my 84 year old mother. I care for her since dad died 2 years ago

also he died 2 weeks after Nick died so it's been hard for us both. I

promised dad I would take care of her. She is extremely healthey takes no

drugs at all. She still helps with the housework and the cooking. Lately I

have had a friend of 25 years move back into town and he is alone and my

age. I have been helping him get settled and his house organized. The same

day the hosue closed the doctor called about a scn he had the day before.

His left kidney is totally consumed with a cancerous tumor. They will be

removing it with in a few weeks so when he comes home from the hospital I

will care for him until he can do it himself. He is under a lot of stress

right now so I spend a lot of time with him lately. I pray he will be ok

were very special friends who lost touch years ago but I got in touch with

him about a year ago and now he has moved about 6 blocks from me.

I better get out of here I am probably boring you to death by now. You take

care and we can talk anytime you want to.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they

fusions, diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a bad back since I was 20 in 1970. I have had 5 back surgeries over the

years and to many ESI's to remember. I also have Arachnoiditis a disease

caused by built up scar tissue. It effect the whole lower 1/2 of my body. I

see a wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal

with what is happening to my lower body. This disease effect the legs, feet

bowels and bladder. It's not very selective it will change my life as it

gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn more.

> Janice

>

>

[Guest guest]

Kate,

Can I ask the surgeons name? Is he at ? If you do come here let me

know when I would be happy to pick you up at airport and take you to the

appointment etc.as I don't live but 15-20 from the airport...by the way 4 mg

of dilaudid is small.I am on 150 of duragesic changed ever 48 and when I was

on dilaudid was rx'd 16 mg q 3 hour prn..dilaudid worked well.

Thanks for your kind words..what type of law do you practice? I have always

wanted to go back to law school to practice med mal.I sued on behalf of my

son in regards to his delivery and we won.the attorney said he had never

seen interrogatories answered so well.all he needed to do was retype my

answers..

Deb RN

From: spinal problems

[mailto:spinal problems ] On Behalf Of Kate

Carroll

Sent: Friday, September 03, 2010 12:18 PM

spinal problems

Subject: Re: Re: Hi there Janice

Deb, Wish I did as some of the best revision surgeons are there. I may be

coming to St Louis for a second opinion. I live in Chapel Hill, NC. I always

enjoy your informative posts. Thanks, Kate

From: Deb

Sent: Friday, September 03, 2010 12:56 PM

spinal problems

<mailto:spinal problems%40>

Subject: RE: Re: Hi there Janice

Kate

Do you live in St Louis? I do../

Deb RN

From: spinal problems

<mailto:spinal problems%40>

[mailto:spinal problems

<mailto:spinal problems%40> ] On Behalf Of Kate

Carroll

Sent: Friday, September 03, 2010 10:15 AM

spinal problems

<mailto:spinal problems%40>

Subject: Re: Re: Hi there Janice

Janice, Your not boring me in the least, I appreciate hearing about you and

your life. I am so sorry about you losing Nick, it must have been

heartwrenching - and at the same time as your Dad. I don't know what I would

do if I lost my husband who has stuck with me through all the surgeries and

the illness I've had. It sounds providential that an old friend has moved

close to you. I hope his surgery is completely successful. I recently had a

kidney removed because it developed an abscess following my pancreatectomy

and don't miss it at all- would never know it's gone. I'll keep my fingers

crossed that the C hasn't spread!

I realize I'll always need pain meds, though I hate being dependent on the

docs to provide them. I truly am concerned that when I have the revision,

which involves breaking my line of fusions from L2-S1, that they won't

medicate me enough due to my tolerance and I'll be in horrific pain. I was

in mind numbing, screaming pain before my pancreatectomy and don't ever want

to experience that again. I currently have the pain in my legs that I

described to you and pain at the disc level above my L2-S1 fusions and below

my C1-C7 line of fusions. I also get killer HA's from all the cervical

fusions, I think. My bladder and bowels don't work normally either. I guess

that's due to the arachnoiditis. I would not be able to function without the

meds I'm on and am grateful to have them, I just want to get to the lowest

level I can tolerate so I can be easily medicated after the revision

surgery. I do think I was under medicated for years and it caused me to

become a recluse. My husband and I could never accept inviatations as I

couldn't sit comfortably. I don't want that again as I feel these meds are

allowing me to rebuild a life. I can now walk for exercise and even went to

the Y one day last week with my husband and 14yo daughter and rode the

exercycle and very cautiously used the arm machines, which I know was great

for me.

You are so lucky to have your mom, and she is equally lucky to have you. She

sounds quite remarkable to be as active as she is at her age. My parents are

gone and it feels a bit weird to be the " oldest " generation. My husband and

I married in our 30's and adopted two children at a relatively older age. I

feel a bit sad that my kids don't get to grow up with grandparents, as I

did. Take good care of yourself, it's a pleasure to have contact with you.

Best, Kate

From: Janice

Sent: Thursday, September 02, 2010 9:42 PM

spinal problems

<mailto:spinal problems%40>

<mailto:spinal problems%40>

Subject: Re: Re: Hi there

I no longer work but when I did it was 12 hours a day 6 days a week on my

feet in high heels. I was a manager of a very big restaurant. I had 150

employees and we were a very busy place in fact we were the busiest place in

town. But it almost killed me. I had been in the restaurant business for

over 30 years when I had to quit. It broke my heart I loved my job and all

the people who worked for me. I had to stop in 1996 due to my fourth

surgery. It just did me in then the Arachnoiditis spread and grew effecting

my legs something awful. I was married to my second husband at the time. We

didnt' need my money he made great money and we had everything in the world.

But he didn't like spending his money supporting me so it fell apart a few

years later. I lived with a man named Nickie and we had dated in high

school. Due to money I couldn't marry him but he was the love of my life. We

fit togethter like gloves. I loved him so. He died 2 years ago and I still

grieve for him. I always will.

Why do you want to cut back on your meds. Kate you will now and forever need

pain medication. I hear so many talk about addiction I call it a dependency

on my drugs. But I have come to a place in my mind and heart where it

doesn't matter anymore. I have come to realize if I am to live with any

quality of life I need those drugs. I have never felt drugged sleepy or

goofy on the drugs I only feel relief. The way to make them work is to take

them on a schedule whether your hurting or now take your meds. I take 30mg.s

of Methadone in the morning and 20mg.s at night. If I have breakthrough pain

I take oxycodone but I only need it maybe one time a week. Don't let that

consume you Kate.What kind of pain do you have now? Is it in jsut the back

or is it in the legs too. I have severe leg pain at times and my bladder and

bowels dont' work so well either. I feel it won't be long before more starts

to happen to me due to a build up of scar tissue. I cannot have any more

surgeries so I hope and pray that it doesn't get to the point where I can't

walk or care for myself.

I live with my 84 year old mother. I care for her since dad died 2 years ago

also he died 2 weeks after Nick died so it's been hard for us both. I

promised dad I would take care of her. She is extremely healthey takes no

drugs at all. She still helps with the housework and the cooking. Lately I

have had a friend of 25 years move back into town and he is alone and my

age. I have been helping him get settled and his house organized. The same

day the hosue closed the doctor called about a scn he had the day before.

His left kidney is totally consumed with a cancerous tumor. They will be

removing it with in a few weeks so when he comes home from the hospital I

will care for him until he can do it himself. He is under a lot of stress

right now so I spend a lot of time with him lately. I pray he will be ok

were very special friends who lost touch years ago but I got in touch with

him about a year ago and now he has moved about 6 blocks from me.

I better get out of here I am probably boring you to death by now. You take

care and we can talk anytime you want to.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they

fusions, diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a bad back since I was 20 in 1970. I have had 5 back surgeries over the

years and to many ESI's to remember. I also have Arachnoiditis a disease

caused by built up scar tissue. It effect the whole lower 1/2 of my body. I

see a wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal

with what is happening to my lower body. This disease effect the legs, feet

bowels and bladder. It's not very selective it will change my life as it

gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn more.

> Janice

>

>

[Guest guest]

I have 3 very good friends in the Chapel hill area or at least close by who all

have Arachnoiditis and they are at different levels of the disease. One of them

will be having neck surgery. The doctor she sees took her head and pushed it

down as hard as he could now she is having major trouble with her neck.

St. Louis is known for their great spine surgeons or so I have heard. I live in

Southern California so I am better with the doctors here but I do listen to

other people who live all over the country who have had back surgeries at least

once in their life.We really have to do our homework when it comes to a good

surgeon. Word of mouth is one of the best recomendations you can get. I pray to

God every day for all of us who have these issues with their spine.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they

fusions, diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a bad back since I was 20 in 1970. I have had 5 back surgeries over the

years and to many ESI's to remember. I also have Arachnoiditis a disease

caused by built up scar tissue. It effect the whole lower 1/2 of my body. I

see a wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal

with what is happening to my lower body. This disease effect the legs, feet

bowels and bladder. It's not very selective it will change my life as it

gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn more.

> Janice

>

>

[Guest guest]

Janice, Your gall bladder surgery sounds like a nightmare. There is no doubt

that one should stay out of hospitals whenever poss as infections run rampant.

I actually had a total pancreatectomy. A doc at U of Mn has been doing them

and transplanting the islet cells that produce insulin to the portal vein, which

enters the liver, since 1977. I was in the hosp in Mn. for 2 mos due to my bowel

being nicked in the procedure and thus my kidney getting an abscess. I ended up

having 3 surgeries, though I only remember 2 of them. My husband told me about

the 3rd mos after I got out of the hosp and I had a hard time believing him -

scary to have been that out of it. I had been sick for 12 yrs and just last year

was diagnosed with pancreas divisum, a birth defect that keeps bile from flowing

as it should. By the time I had the surg. I was completely dependent on getting

my nutrition through my arm as I couldn't tolerate eating anything. I am doing

well now. I only need 6u of insulin per day which means I may eventually end

up being in the 25% that don't need insulin following this surgery.

I know what you mean about people not realizing how severe your health

problems are when you look normal. I've dealt with that since I was injured

lifting a patient at 26yo and had my laminectomies botched so needed a couple of

anterior procedures on my spine and then needed a colectomy as somehow my colon

was denervated. I was in a women's group a few years ago where we were supposed

to tell our " stories " . After I told mine someone said " most of what you've

shared is your health issues " and I realized the group thought I was a nut.

People do not realize that some of us do deal with surgeries while they are

dealing with promotions. I try to make my days as meaningful as poss but there

is no denying that many of my major milestones are getting over medical issues.

I will never take part in another such group. Even my siblings don't get it. It

makes me cherish the friends who have stood by. After my pancreatectomy I had a

friend of 25yrs come from India to see me and another of 36 yrs come from Fla.

They are like family to me, more than are my siblings, because they understand

that I didn't ask for any of this and have always tried to overcome my

difficulties. Our culture is heavy on making out that people ask for such

problems and that all issues can be overcome with effort, which those of us with

chronic conds. know isn't true.

I'm really glad your pain is adequately medicated now. It must have been a

real challenge, having back issues when living on a ranch - with all the work

that entails. I am so glad to be able to be up and about myself. Am going to

start tutoring an ESL student which I'm thrilled about. Before getting on the

meds I'm on now, I couldn't even volunteer as I couldn't predict when I could be

anywhere.

Thanks so much for sharing and letting me do so. It's cathartic. Do take

good care of yourself. Best, Kate

From: Janice

Sent: Friday, September 03, 2010 12:45 PM

spinal problems

Subject: Re: Re: Hi there Janice

Kate can I ask why you had part of your pancerous removed? Did you also have an

abcess in it too? I had my gall bladder out a few years ago and that's all the

surgeries I want. It was so enlarged that they had to cut me from jsut below my

breastbone all the way down and through my belly button. The I got a staph

infection. I was in intensive care 8 days and 10 more days in a regular room.

Can you believe it 18 days for what should have been a sipmle gall bladder

surgery. It was also done in a world famous hospital. Loma Univ. in Loma

CA.

I have 3 grown daughters in their early 40's and late 30's. I also have grand

children and one great grandson. It was all pleasure raising my kids they were

good girls. We lived on a ranch where they had everything in the world to do. I

kept them home and busy. Thank God they turned out very well. Since I was 20 I

have had back pain, ruptured discs. The surgeries started at 23 my last one was

about 7 years ago. I am on a lot of drugs right now to thin my blood and keep my

body working the way it should. I also have heart disease along with a couple of

other problems but I try not to let them get me down.

I know what you mean about going out. My husband thought I was crazy because I

could sit in my recliner at home but couldn't sit long enough to have dinner and

conversations after dinner. There were so many things he didn't understand about

me and what was happening to me. He didn't want for me to share any of my

problems with him. To talk about them made them real and he didnt' want to

believe there was anything wrong with me.

I am so grateful for my family and circle of friends I have hand selected

through the years. They at least recognize that I have problems even if you

can't see them. I hope your surgery is sucessfull and the pain is kept at a

minimum for your sake. When will you be having surgery?My pain doctor told me I

needed more surgery but I said no way. If the pain is liveable than I will

remain the way I am. My pain is not that bad right now. If it gets worse then I

might change my mind but my general health is very poor right now and my doctors

said no to any surgery because of my heart and the fact that my blood is so thin

it would probably kill me.

I will go I have loved talking to you so plese anytime you want just sit down

and type.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they fusions,

diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have had

a bad back since I was 20 in 1970. I have had 5 back surgeries over the years

and to many ESI's to remember. I also have Arachnoiditis a disease caused by

built up scar tissue. It effect the whole lower 1/2 of my body. I see a

wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal with

what is happening to my lower body. This disease effect the legs, feet bowels

and bladder. It's not very selective it will change my life as it gets worse.

> I have learned so much about this disease and back disorders. I hope to learn

more.

> Janice

>

>

[Guest guest]

Janice, If you ever visit your friends in Chapel Hill, please look me up, I'd

love to meet you. If any of your friends in Chapel HIll are interested in

meeting someone else with AA it would be great to meet them. I'm really

interested in meeting new people as I can now predictably make plans and go out.

Though we've lived in Chapel Hill 12 yrs I have few contacts. Those I have are

through my daughter as she enjoys bringing friends home and then I get to meet

the parents, some of whom have become good friends. These pain meds are opening

the world for me. Best, Kate

From: Janice

Sent: Friday, September 03, 2010 1:50 PM

spinal problems

Subject: Re: Re: Hi there Janice

I have 3 very good friends in the Chapel hill area or at least close by who all

have Arachnoiditis and they are at different levels of the disease. One of them

will be having neck surgery. The doctor she sees took her head and pushed it

down as hard as he could now she is having major trouble with her neck.

St. Louis is known for their great spine surgeons or so I have heard. I live in

Southern California so I am better with the doctors here but I do listen to

other people who live all over the country who have had back surgeries at least

once in their life.We really have to do our homework when it comes to a good

surgeon. Word of mouth is one of the best recomendations you can get. I pray to

God every day for all of us who have these issues with their spine.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they

fusions, diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a bad back since I was 20 in 1970. I have had 5 back surgeries over the

years and to many ESI's to remember. I also have Arachnoiditis a disease

caused by built up scar tissue. It effect the whole lower 1/2 of my body. I

see a wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal

with what is happening to my lower body. This disease effect the legs, feet

bowels and bladder. It's not very selective it will change my life as it

gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn more.

> Janice

>

>

[Guest guest]

Deb, It is so very kind of you to offer to pick me up at the airport. I would

love to meet you!!!

Unfortunately I've not been able to work but a few yrs after going to law

school due to my spine issues and the pancreatitis. I did work in Med Mal and

would love to go back to it. I've only recently gotten on adequate pain meds.

I'm on 150mcg. fentenyl in patches in addition to the dilaudid. If I'd been

given this years ago I might have been able to continue working. Now that my

pancreas is out, once I recover from the spinal revision, I just might be able

to go back to practicing law.

You mentioned that you sued on behalf of your son's birth. Does he have CP?

I adopted a little girl in Russia who has CP. She's now 14 and the love of my

life. She needed lots of therapies when she was young, including surgery on her

leg and hip but she's doing well now. Hers is mild, though it affects all four

limbs- the right side more than the left.

I'm not surprised you were able to answer interrogatories so well given the

way your notes read. I always felt law school was less strenuous than nursing

school, though RN's don't often get the respect they deserve.

I do hope I get to meet you one day. Best, Kate

From: Deb

Sent: Friday, September 03, 2010 1:29 PM

spinal problems

Subject: RE: Re: Hi there Janice

Kate,

Can I ask the surgeons name? Is he at ? If you do come here let me

know when I would be happy to pick you up at airport and take you to the

appointment etc.as I don't live but 15-20 from the airport...by the way 4 mg

of dilaudid is small.I am on 150 of duragesic changed ever 48 and when I was

on dilaudid was rx'd 16 mg q 3 hour prn..dilaudid worked well.

Thanks for your kind words..what type of law do you practice? I have always

wanted to go back to law school to practice med mal.I sued on behalf of my

son in regards to his delivery and we won.the attorney said he had never

seen interrogatories answered so well.all he needed to do was retype my

answers..

Deb RN

From: spinal problems

[mailto:spinal problems ] On Behalf Of Kate

Carroll

Sent: Friday, September 03, 2010 12:18 PM

spinal problems

Subject: Re: Re: Hi there Janice

Deb, Wish I did as some of the best revision surgeons are there. I may be

coming to St Louis for a second opinion. I live in Chapel Hill, NC. I always

enjoy your informative posts. Thanks, Kate

From: Deb

Sent: Friday, September 03, 2010 12:56 PM

spinal problems

<mailto:spinal problems%40>

Subject: RE: Re: Hi there Janice

Kate

Do you live in St Louis? I do../

Deb RN

From: spinal problems

<mailto:spinal problems%40>

[mailto:spinal problems

<mailto:spinal problems%40> ] On Behalf Of Kate

Carroll

Sent: Friday, September 03, 2010 10:15 AM

spinal problems

<mailto:spinal problems%40>

Subject: Re: Re: Hi there Janice

Janice, Your not boring me in the least, I appreciate hearing about you and

your life. I am so sorry about you losing Nick, it must have been

heartwrenching - and at the same time as your Dad. I don't know what I would

do if I lost my husband who has stuck with me through all the surgeries and

the illness I've had. It sounds providential that an old friend has moved

close to you. I hope his surgery is completely successful. I recently had a

kidney removed because it developed an abscess following my pancreatectomy

and don't miss it at all- would never know it's gone. I'll keep my fingers

crossed that the C hasn't spread!

I realize I'll always need pain meds, though I hate being dependent on the

docs to provide them. I truly am concerned that when I have the revision,

which involves breaking my line of fusions from L2-S1, that they won't

medicate me enough due to my tolerance and I'll be in horrific pain. I was

in mind numbing, screaming pain before my pancreatectomy and don't ever want

to experience that again. I currently have the pain in my legs that I

described to you and pain at the disc level above my L2-S1 fusions and below

my C1-C7 line of fusions. I also get killer HA's from all the cervical

fusions, I think. My bladder and bowels don't work normally either. I guess

that's due to the arachnoiditis. I would not be able to function without the

meds I'm on and am grateful to have them, I just want to get to the lowest

level I can tolerate so I can be easily medicated after the revision

surgery. I do think I was under medicated for years and it caused me to

become a recluse. My husband and I could never accept inviatations as I

couldn't sit comfortably. I don't want that again as I feel these meds are

allowing me to rebuild a life. I can now walk for exercise and even went to

the Y one day last week with my husband and 14yo daughter and rode the

exercycle and very cautiously used the arm machines, which I know was great

for me.

You are so lucky to have your mom, and she is equally lucky to have you. She

sounds quite remarkable to be as active as she is at her age. My parents are

gone and it feels a bit weird to be the " oldest " generation. My husband and

I married in our 30's and adopted two children at a relatively older age. I

feel a bit sad that my kids don't get to grow up with grandparents, as I

did. Take good care of yourself, it's a pleasure to have contact with you.

Best, Kate

From: Janice

Sent: Thursday, September 02, 2010 9:42 PM

spinal problems

<mailto:spinal problems%40>

<mailto:spinal problems%40>

Subject: Re: Re: Hi there

I no longer work but when I did it was 12 hours a day 6 days a week on my

feet in high heels. I was a manager of a very big restaurant. I had 150

employees and we were a very busy place in fact we were the busiest place in

town. But it almost killed me. I had been in the restaurant business for

over 30 years when I had to quit. It broke my heart I loved my job and all

the people who worked for me. I had to stop in 1996 due to my fourth

surgery. It just did me in then the Arachnoiditis spread and grew effecting

my legs something awful. I was married to my second husband at the time. We

didnt' need my money he made great money and we had everything in the world.

But he didn't like spending his money supporting me so it fell apart a few

years later. I lived with a man named Nickie and we had dated in high

school. Due to money I couldn't marry him but he was the love of my life. We

fit togethter like gloves. I loved him so. He died 2 years ago and I still

grieve for him. I always will.

Why do you want to cut back on your meds. Kate you will now and forever need

pain medication. I hear so many talk about addiction I call it a dependency

on my drugs. But I have come to a place in my mind and heart where it

doesn't matter anymore. I have come to realize if I am to live with any

quality of life I need those drugs. I have never felt drugged sleepy or

goofy on the drugs I only feel relief. The way to make them work is to take

them on a schedule whether your hurting or now take your meds. I take 30mg.s

of Methadone in the morning and 20mg.s at night. If I have breakthrough pain

I take oxycodone but I only need it maybe one time a week. Don't let that

consume you Kate.What kind of pain do you have now? Is it in jsut the back

or is it in the legs too. I have severe leg pain at times and my bladder and

bowels dont' work so well either. I feel it won't be long before more starts

to happen to me due to a build up of scar tissue. I cannot have any more

surgeries so I hope and pray that it doesn't get to the point where I can't

walk or care for myself.

I live with my 84 year old mother. I care for her since dad died 2 years ago

also he died 2 weeks after Nick died so it's been hard for us both. I

promised dad I would take care of her. She is extremely healthey takes no

drugs at all. She still helps with the housework and the cooking. Lately I

have had a friend of 25 years move back into town and he is alone and my

age. I have been helping him get settled and his house organized. The same

day the hosue closed the doctor called about a scn he had the day before.

His left kidney is totally consumed with a cancerous tumor. They will be

removing it with in a few weeks so when he comes home from the hospital I

will care for him until he can do it himself. He is under a lot of stress

right now so I spend a lot of time with him lately. I pray he will be ok

were very special friends who lost touch years ago but I got in touch with

him about a year ago and now he has moved about 6 blocks from me.

I better get out of here I am probably boring you to death by now. You take

care and we can talk anytime you want to.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they

fusions, diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a bad back since I was 20 in 1970. I have had 5 back surgeries over the

years and to many ESI's to remember. I also have Arachnoiditis a disease

caused by built up scar tissue. It effect the whole lower 1/2 of my body. I

see a wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal

with what is happening to my lower body. This disease effect the legs, feet

bowels and bladder. It's not very selective it will change my life as it

gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn more.

> Janice

>

>

[Guest guest]

Kate you are so right in that if someone can't see your injury it doesn't exist.

People also think that because you had surgery that should have made you well

again. My sister one year younger than me told me one day that back in the old

days she thought I was a hypochondriac. I couldn't go shoping with her I

couldn't go to church I had trouble sitting on the toilet. But she hurt her back

and had to have 2 surgeries in one year now she is in constant pain. Now she

comes to me and ask my forgiveness because she now feels what I was feeling. I

don't care about the non believers any more I am true to myself. I dont' talk to

much about Arachnoiditis no one can understand it. I have had people tell me

that ESI's will not cause Arachnoiditis. I feel sorry for them because the more

they have the higher the risk. Not everyone who has a series of the ESI's will

get Arach but who wants to take that chance?

I had no idea you could live without your pancerous (sp). This is so good to

know. I also didn't know much about stents in your arteries to open them up

until I almost had a heart attack a few months ago. Now I know a lot about them

through research I have done. The surgeon who removed my gall bladder said it

was the size of a small football. It was enlarged and so inflamed and so so

painful. I only had the one attack though some people go for years with this

problem and they will have an attack then get better and don't even go to a

doctor sometimes. The morning I woke up it was hurting but nothing like it was

hurting as the day wore on. It made the right side of back hurt terribly. My

daughter talked me into going to the E.R. at Loma a large Univ. hospital.

They did an ultra sound and about 4 hours later I was in surgery. They were

afraid it would rupture and cause sepsis. That's my story.Did you find the

doctors in MN. to be good doctors and surgeons? I live in Southern CA. so I am

near some of the best doctors and hospitals in the world but I use Loma

famous for heart and kidney transplants mostly in children but adults too.My

grand daughter will eventually have to have a kidney transplant and she wants

the doctor who has treated her for the last 12 years to do it so she said she

will never leave the area.

Yes it was hard to run the ranch it was a very small ranch of 4 acres but we had

or the kids had every animal known to this region. They were also all members of

the schools FFA program. My husband and oldest daughter did most of the work

until she got old enough to have a boyfriend and con him into helping her. I

also raised very large gardens the other two girls were in charge of weeds in

the garden. At picking time everyone helped then I would can or freeze

everything from our garden. I had good years back then I have only been in

constant pain for the last 8 years before that I only had pain when I hurt my

back and was waiting for the doctor to operate. My first 3 surgeries were

complete success's I even went back to work in a month to 6 weeks.On our little

ranch there were two homes so mom and dad moved into the smaller house and they

helped out a lot too. Not the hard labor work but in the garden and dad would

ride the mower and keep the grass down. Mom would water trees and plants we had

a sprinkler system for the grass. We had a nice big pool that I spent a lot of

time in. I wish I had one now but I am afraid it would hurt me not help me.

I will go as I have talked enough. Thank you for listening.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they fusions,

diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a bad back since I was 20 in 1970. I have had 5 back surgeries over the

years and to many ESI's to remember. I also have Arachnoiditis a disease caused

by built up scar tissue. It effect the whole lower 1/2 of my body. I see a

wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal with

what is happening to my lower body. This disease effect the legs, feet bowels

and bladder. It's not very selective it will change my life as it gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn more.

> Janice

>

>

[Guest guest]

Hi Deb, Forgot to tell you the surgeons names that have been recommended. One

is Kieth Bridwell and the other,I think, is Lenke. They are both at -

Wash. U. I got their names from a sight devoted to " flatback " reconstruction.

What do you know of them? Kate

From: Deb

Sent: Friday, September 03, 2010 1:29 PM

spinal problems

Subject: RE: Re: Hi there Janice

Kate,

Can I ask the surgeons name? Is he at ? If you do come here let me

know when I would be happy to pick you up at airport and take you to the

appointment etc.as I don't live but 15-20 from the airport...by the way 4 mg

of dilaudid is small.I am on 150 of duragesic changed ever 48 and when I was

on dilaudid was rx'd 16 mg q 3 hour prn..dilaudid worked well.

Thanks for your kind words..what type of law do you practice? I have always

wanted to go back to law school to practice med mal.I sued on behalf of my

son in regards to his delivery and we won.the attorney said he had never

seen interrogatories answered so well.all he needed to do was retype my

answers..

Deb RN

From: spinal problems

[mailto:spinal problems ] On Behalf Of Kate

Carroll

Sent: Friday, September 03, 2010 12:18 PM

spinal problems

Subject: Re: Re: Hi there Janice

Deb, Wish I did as some of the best revision surgeons are there. I may be

coming to St Louis for a second opinion. I live in Chapel Hill, NC. I always

enjoy your informative posts. Thanks, Kate

From: Deb

Sent: Friday, September 03, 2010 12:56 PM

spinal problems

<mailto:spinal problems%40>

Subject: RE: Re: Hi there Janice

Kate

Do you live in St Louis? I do../

Deb RN

From: spinal problems

<mailto:spinal problems%40>

[mailto:spinal problems

<mailto:spinal problems%40> ] On Behalf Of Kate

Carroll

Sent: Friday, September 03, 2010 10:15 AM

spinal problems

<mailto:spinal problems%40>

Subject: Re: Re: Hi there Janice

Janice, Your not boring me in the least, I appreciate hearing about you and

your life. I am so sorry about you losing Nick, it must have been

heartwrenching - and at the same time as your Dad. I don't know what I would

do if I lost my husband who has stuck with me through all the surgeries and

the illness I've had. It sounds providential that an old friend has moved

close to you. I hope his surgery is completely successful. I recently had a

kidney removed because it developed an abscess following my pancreatectomy

and don't miss it at all- would never know it's gone. I'll keep my fingers

crossed that the C hasn't spread!

I realize I'll always need pain meds, though I hate being dependent on the

docs to provide them. I truly am concerned that when I have the revision,

which involves breaking my line of fusions from L2-S1, that they won't

medicate me enough due to my tolerance and I'll be in horrific pain. I was

in mind numbing, screaming pain before my pancreatectomy and don't ever want

to experience that again. I currently have the pain in my legs that I

described to you and pain at the disc level above my L2-S1 fusions and below

my C1-C7 line of fusions. I also get killer HA's from all the cervical

fusions, I think. My bladder and bowels don't work normally either. I guess

that's due to the arachnoiditis. I would not be able to function without the

meds I'm on and am grateful to have them, I just want to get to the lowest

level I can tolerate so I can be easily medicated after the revision

surgery. I do think I was under medicated for years and it caused me to

become a recluse. My husband and I could never accept inviatations as I

couldn't sit comfortably. I don't want that again as I feel these meds are

allowing me to rebuild a life. I can now walk for exercise and even went to

the Y one day last week with my husband and 14yo daughter and rode the

exercycle and very cautiously used the arm machines, which I know was great

for me.

You are so lucky to have your mom, and she is equally lucky to have you. She

sounds quite remarkable to be as active as she is at her age. My parents are

gone and it feels a bit weird to be the " oldest " generation. My husband and

I married in our 30's and adopted two children at a relatively older age. I

feel a bit sad that my kids don't get to grow up with grandparents, as I

did. Take good care of yourself, it's a pleasure to have contact with you.

Best, Kate

From: Janice

Sent: Thursday, September 02, 2010 9:42 PM

spinal problems

<mailto:spinal problems%40>

<mailto:spinal problems%40>

Subject: Re: Re: Hi there

I no longer work but when I did it was 12 hours a day 6 days a week on my

feet in high heels. I was a manager of a very big restaurant. I had 150

employees and we were a very busy place in fact we were the busiest place in

town. But it almost killed me. I had been in the restaurant business for

over 30 years when I had to quit. It broke my heart I loved my job and all

the people who worked for me. I had to stop in 1996 due to my fourth

surgery. It just did me in then the Arachnoiditis spread and grew effecting

my legs something awful. I was married to my second husband at the time. We

didnt' need my money he made great money and we had everything in the world.

But he didn't like spending his money supporting me so it fell apart a few

years later. I lived with a man named Nickie and we had dated in high

school. Due to money I couldn't marry him but he was the love of my life. We

fit togethter like gloves. I loved him so. He died 2 years ago and I still

grieve for him. I always will.

Why do you want to cut back on your meds. Kate you will now and forever need

pain medication. I hear so many talk about addiction I call it a dependency

on my drugs. But I have come to a place in my mind and heart where it

doesn't matter anymore. I have come to realize if I am to live with any

quality of life I need those drugs. I have never felt drugged sleepy or

goofy on the drugs I only feel relief. The way to make them work is to take

them on a schedule whether your hurting or now take your meds. I take 30mg.s

of Methadone in the morning and 20mg.s at night. If I have breakthrough pain

I take oxycodone but I only need it maybe one time a week. Don't let that

consume you Kate.What kind of pain do you have now? Is it in jsut the back

or is it in the legs too. I have severe leg pain at times and my bladder and

bowels dont' work so well either. I feel it won't be long before more starts

to happen to me due to a build up of scar tissue. I cannot have any more

surgeries so I hope and pray that it doesn't get to the point where I can't

walk or care for myself.

I live with my 84 year old mother. I care for her since dad died 2 years ago

also he died 2 weeks after Nick died so it's been hard for us both. I

promised dad I would take care of her. She is extremely healthey takes no

drugs at all. She still helps with the housework and the cooking. Lately I

have had a friend of 25 years move back into town and he is alone and my

age. I have been helping him get settled and his house organized. The same

day the hosue closed the doctor called about a scn he had the day before.

His left kidney is totally consumed with a cancerous tumor. They will be

removing it with in a few weeks so when he comes home from the hospital I

will care for him until he can do it himself. He is under a lot of stress

right now so I spend a lot of time with him lately. I pray he will be ok

were very special friends who lost touch years ago but I got in touch with

him about a year ago and now he has moved about 6 blocks from me.

I better get out of here I am probably boring you to death by now. You take

care and we can talk anytime you want to.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they

fusions, diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a bad back since I was 20 in 1970. I have had 5 back surgeries over the

years and to many ESI's to remember. I also have Arachnoiditis a disease

caused by built up scar tissue. It effect the whole lower 1/2 of my body. I

see a wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal

with what is happening to my lower body. This disease effect the legs, feet

bowels and bladder. It's not very selective it will change my life as it

gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn more.

> Janice

>

>

[Guest guest]

I would like to know more about the flat back syndrome as I have it but to my

knowledge it has never bothered me nor has any doctor recommended any treatment

for it.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they

fusions, diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a bad back since I was 20 in 1970. I have had 5 back surgeries over the

years and to many ESI's to remember. I also have Arachnoiditis a disease

caused by built up scar tissue. It effect the whole lower 1/2 of my body. I

see a wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal

with what is happening to my lower body. This disease effect the legs, feet

bowels and bladder. It's not very selective it will change my life as it

gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn more.

> Janice

>

>

[Guest guest]

Janice, I knew nothing about it and didn't think it was a problem for me but

went to the ER at Duke one day, when my pain was unbearable, and saw an

orthopedic surgeon who told me he wouldn't do anything else without addressing

my " flatback " as it would wear out my hips. Before having another fusion, for a

badly herniated disc at L1-2, I thought I should look into this. I'm glad I did

as when I went to the specialist in flatback at Hopkins he told me another

fusion would increase the problem and that he thought much of my pain was due to

the flatback. He also said he would fuse me at L1-2 when doing the corrective

surgery. The surgery is no small potatoes, it involves breaking the block of

fusions I have from L2-S1 and placing rods to recreate a curve. I am not in any

hurry to have it done now that I'm getting adequate pain control most days. I

plan on waiting until I no longer have pain control or have much more difficulty

walking but in the meantime I'm getting another opinion from another specialist

in correcting flatback. In Ca. there's a Dr. Hu in San Fran who folks on the

flatback site recommend. There's a lot of info online about the cond. My

neurosurgeon of 25 yrs, at Hopkins, never mentioned it nor did my ortho surgeon

who practiced with him, but it makes sense. When you stand, lock your knees and

see if you can straighten up. I can't, which means I'm using my muscles in my

hips and bending my knees to keep an upright posture and this severely strains

and causes pain in the legs, hips etc. Before getting on this large dose of

fentenyl I was using a walker because my feet pulled up so badly I was unsteady

and I could only take baby steps. I would have sworn it wasn't pain causing it

but it must have been, because I can walk normally with the pain meds. I let the

fentenyl lapse one day and I reverted to the baby step way of walking. Hope

that gives you a start on gathering info. Best, Kate

From: Janice

Sent: Friday, September 03, 2010 3:25 PM

spinal problems

Subject: Re: Re: Hi there Janice

I would like to know more about the flat back syndrome as I have it but to my

knowledge it has never bothered me nor has any doctor recommended any treatment

for it.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they

fusions, diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a bad back since I was 20 in 1970. I have had 5 back surgeries over the

years and to many ESI's to remember. I also have Arachnoiditis a disease

caused by built up scar tissue. It effect the whole lower 1/2 of my body. I

see a wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal

with what is happening to my lower body. This disease effect the legs, feet

bowels and bladder. It's not very selective it will change my life as it

gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn more.

> Janice

>

>

[Guest guest]

I guess it doesn't bother me because other than the diagnosis years ago no one

has mentioned since except when I have a new MRI they tell me in a passing tone

that I have flat back syndrome. I can stand up ok like you said but I have

walked for many years slightly bent forward if I don't then the pain in my lower

back drives me crazy after only a few minutes. Send my your private address and

I will let my friends know you live in their area. Jan and I are the owners of a

group just for Arachnoiditis. I have really learned a lot of what I thought I

knew everything about these past few days. Thank you for the education it has

opened my eye.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they

fusions, diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a bad back since I was 20 in 1970. I have had 5 back surgeries over the

years and to many ESI's to remember. I also have Arachnoiditis a disease

caused by built up scar tissue. It effect the whole lower 1/2 of my body. I

see a wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal

with what is happening to my lower body. This disease effect the legs, feet

bowels and bladder. It's not very selective it will change my life as it

gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn more.

> Janice

>

>

[Guest guest]

Bridwell is fantastic. But, .Lenke was the name that came up when our

friends were asked who they would go to for scoliosis( my son was wrongly

diagnosed) and it was lenke.the other name that came up was this other

guy..who was a retired military guy that was taking money from companies and

fabricated his study data..I would go with Lenke without a instant of

hesitation IF HE WILL TAKE YOU ON.HE IS VERY SELECTIVE..people from all over

the world come to see him,.so if you call and speak with his intake

person.hell ya, if he will take you I would get his opinion. is top

notch..

Deb RN

From: spinal problems

[mailto:spinal problems ] On Behalf Of Janice

Sent: Friday, September 03, 2010 2:25 PM

spinal problems

Subject: Re: Re: Hi there Janice

I would like to know more about the flat back syndrome as I have it but to

my knowledge it has never bothered me nor has any doctor recommended any

treatment for it.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they

fusions, diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a bad back since I was 20 in 1970. I have had 5 back surgeries over the

years and to many ESI's to remember. I also have Arachnoiditis a disease

caused by built up scar tissue. It effect the whole lower 1/2 of my body. I

see a wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal

with what is happening to my lower body. This disease effect the legs, feet

bowels and bladder. It's not very selective it will change my life as it

gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn more.

> Janice

>

>

[Guest guest]

Janice, if your friends are interested or you want to reach me privately, my

email is katecarr@... and my number is 919 929 3402. Thanks so much, Kate

From: Janice

Sent: Friday, September 03, 2010 1:50 PM

spinal problems

Subject: Re: Re: Hi there Janice

I have 3 very good friends in the Chapel hill area or at least close by who all

have Arachnoiditis and they are at different levels of the disease. One of them

will be having neck surgery. The doctor she sees took her head and pushed it

down as hard as he could now she is having major trouble with her neck.

St. Louis is known for their great spine surgeons or so I have heard. I live in

Southern California so I am better with the doctors here but I do listen to

other people who live all over the country who have had back surgeries at least

once in their life.We really have to do our homework when it comes to a good

surgeon. Word of mouth is one of the best recomendations you can get. I pray to

God every day for all of us who have these issues with their spine.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they

fusions, diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a bad back since I was 20 in 1970. I have had 5 back surgeries over the

years and to many ESI's to remember. I also have Arachnoiditis a disease

caused by built up scar tissue. It effect the whole lower 1/2 of my body. I

see a wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal

with what is happening to my lower body. This disease effect the legs, feet

bowels and bladder. It's not very selective it will change my life as it

gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn more.

> Janice

>

>

[Guest guest]

Thanks Kate I got it.

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they

fusions, diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a bad back since I was 20 in 1970. I have had 5 back surgeries over the

years and to many ESI's to remember. I also have Arachnoiditis a disease

caused by built up scar tissue. It effect the whole lower 1/2 of my body. I

see a wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal

with what is happening to my lower body. This disease effect the legs, feet

bowels and bladder. It's not very selective it will change my life as it

gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn more.

> Janice

>

>