To

[Guest guest]

Thanks Carole. I really don't even know where to start! This first

appointment will probably be to consider setting up an appointment

with someone else. I have a PPO so that helps some. Also need to be

sure my thyroid is okay. We did an ultrasound in Dec. I'm still not

sure of the results. The blood work came out okay. He thought he

felt a lump....

Kathy

>

> Kathy,

>

> I know what you mean about not know where the pain comes from

sometimes, but

> you really shouldn't downplay " just arthritis " . You could find

out that it

> is arthritis of the spine that is giving you your worst pain! I

just mean

> that we are more apt than most to have it. I was told that we

are sitting

> ducks, due to our rods, etc., and having to compensate all over

the place.

>

> I hope that you get some results from your doctor's appointment,

and that

> your insurance covers everything that you need!

>

> Sincerely,

>

> Carole M.

>

[Guest guest]

Hi !

I had already underwent the 2-stage revision and was fused to the sacrum in 2001. So I know what you are going through! 8 weeks isn't very far along but hang in there, it will get better, I promise!

I didn't have an osteotomy done (the wedge cut in your spine to straighten you up) with my revision, so I needed to have it done now. And yes it's about the same thing all over again....I had all instrumentation removed, the osteotomy cut in 2 dimensions (for the sagittal and coronal imbalances) my spine straightened out the best she could, then all new instrumentation put back in. I can't wait to see x-rays of the new me! She says that she got a 90-95% correction when she had to stop at about 9 hours because I began bleeding too much. Otherwise she felt she could have gotten over 100%. But the recovery is the same - the good ol' TLSO brace during the day; sleep sleep sleep; and medication medication medication. And yes you are quite right - this is some wild ride! You will find as each day goes by the you will be quite happy that you took it too!

Easy days and Restful nights.....~CA ~

[Guest guest]

Kam,

I know what you mean. Even after surgery, I've always been able to

walk. I'm just glad the leg thing quickly (sort of) went away.

Let me know what you think about this one (I collected it from the

net a long time ago. The " " mentioned below is not me.

>A friend of mine came up with this one and gave me permission to

submit

>it, saying he wanted to be attributed by his initials, EFS, only.

>

>There once was a man from the stix,

>Who liked to write limerics.

>But he failed at the sport,

>Because he wrote them too short.

>

Ah yes. Jokes on limerick length. I remember seeing the following

two

similar jokes in OMNI magazine back in the early 80's, though I

don't

know where they got them:

===

There once was a lady from Crewe

Whose limerics went to line two.

---

There once was a man from Verdun.

===

Thus inspired, my brother and I set about making joke

limericks for

3, 4, and 6 lines. If memory serves:

===

There once was a lady from Bree

Whose limericks went to line three,

And never went farther.

---

There once was a man on the floor

Whose limericks went to line four.

He'd start up the trend,

and then it would end.

---

There once was a man from the Styx

Whose limericks went to line six.

He never did know

How far they should go,

And never did bother to fix

Them at all.

===

Of course, you can joke on things that aren't length:

===

There once was a man with a dime

Who wrote limericks some of the time.

He wrote just a bit,

But they sounded like s___

'Cuz he never could get them to sound right.

[Guest guest]

thanks! hubby and i chuckled quite a bit at these, but admittedly, i

had to think about the verdun one (pun intended) for far too long.

thanks for making me use my brain a little...

kam

[Guest guest]

great story Kathy, thank you! :0)))

[low dose naltrexone] to

Hi ,

I've been on LDN since Dec. 17, 2003. I read the lowdose website and it made sense. I asked my doctor if I could try it and he prescribed 50mg Revia tablets. That night I tried to cut half a pill into smaller pieces, what a mess. I took the mess because I do not like to waste anything. I didn't notice anything that night. The next morning, I got up and went to the washroom. When I was done, I looked for my cane. I hadn't used my cane to get there! That day, I got around the house without my cane or walker.

To this day I move around the house without either. When outside I use a cane for balance. Falling on a wood floor doesn't hurt as bad as falling on cement! I only use the walker if I need to walk a long distance for something. I never did buy the electric wheelchair that was in the cards before LDN.

I take 4.5mg every night. I only forgot 1 dose and will hopefully never do that again. It was a disaster. I had trouble walking, balancing and speaking. As long as I take the LDN I am fine. I hope you have been having good results with LDN too.

Hope all is well,

Kathy

Make free worldwide PC-to-PC calls. Try the new Canada Messenger with Voice

[Guest guest]

~Can you please tell me your experience on Tysabri? That is what is currently being recommended to me, thanks, blessings, kate [low dose naltrexone] Re: losing hope in ldnlow dose naltrexone > Just wanted to let you know that I have been on LDN sive Jan 9 > 2004 > and last year I too was losing hope that it was actually working > as I > was having symtoms that I had not had before and I was not > feeling > that well.. I kept taking LDN for fear of things getting even > worse > if I stopped and guess what??? I had my MRI on Dec 27, 2006 and > there > are a few lessions that have disappeared and the ones that are > still > there have not chnaged! This to me was great news and just more > proof > that LDN works...> Keep with it!> > > > > > > >> > I have been on LDN steady since 9-1-06. Recieved tysabri 8-24-> 09. > I feel that my MS is getting worse. Thought of stopping LDN, > then I > remember way I started it, for painful spasms, that was relieved > immediately with the LDN.> > > > For persons having increased symptoms, think what has the > LDN > helped. I will bare with the increase symptoms & work on what > LDN > has given back.> > > > I am not afraid of what I think LDN is causing. Tried alot > of > other drugs that did cause problems. At the present time LDN, > birth > control pill and one a day motrin,are the only meds I need now. > Because of LDN the elimination of the other meds happen..> > > > > > > > > > ---------------------------------> > Finding fabulous fares is fun.> > Let FareChase search your favorite travel sites to find > flight and hotel bargains.> >> > > Recharge Your Chi! Believe and Achieve! Dreams are Worth Striving For!

10 lbs down, 40 to go! Ask me~I'm on Fire!

ians 4:13 I can do all things through Crhist who gives me strength.

Attachment: vcard [not shown]

[Guest guest]

I read your email and I wanted to ask you what dose of Prilosec Dr. R

recommend you take. What were your symptoms associated with the

gastritis? I think I may be having the same problems. I am so gassy

and bloated all the time. Even with a glass of water I feel bloated and

gassy. I had the mgb 3 years Dr. Hargroder in Joplin, Mo and have done

great until recently. I am not currently taking any Prilosec, just my

vitamins and iron only. Thanks for your time! Good luck on your weight

loss! 2 friends of mine are having the issues you are having with slow

losing. I hope it all works out well with you!

Gordineer

To Dr. R regarding revision , etc;

Dr. Rutledge,

Thanks so much for the advice regarding the Prilosec for my

epigastric pain. Increasing the Prilosec did help the problem and

I'm no longer having epigastric pain. No doubt you were right about

it being gastritis;

Secondly, 2 months late I finally had my 6 month appointment with my

primary care physician yesterday. My weight was 174 yesterday,

(172 today), down from 210 preop. We discussed what would be an

appropriate weight goal for me to shoot for, looked at a height wt

chart and decided that my weight should be between 110 and 115lbs (

this is for a 5'1.5 " medium frame woman like me). I actually agree

with this goal weight. My weight loss has been extemely slow, and

currently I'm having trouble even getting below 170. I'm 4 months

away from my 1 year anniversary from the MGB and I've decided that

if I'm not at least 40lbs down by May ( considering that I still

have 64 more pounds to lose), that you and I need to consider a

revision of my surgery. With a revision, do you modify the amount

of small intestine that is bypassed? Do you also modify the gastric

pouch?

Also Dr. R, in the many patients you have treated over the years, is

it a common phenomenon that your patients who started out a lower

rate to lose more slowly? Is this a failing on my part somehow?

Thank you,

[Guest guest]

Hello !

My name is and I've been a member of this group for quite some time

although I'm not much of a contributor or do I read many of the stories from

other members. However, in passing today, I saw your response to this young

woman April and I can understand your response to her depression.

I've been where April is right now. Matter-of-fact, I still am to a certain

degree. I've been sick for nearly 20 years now since I contracted a very severe

case of encephalitis in 1988 from what I was told was a mosquito bite.

At the time, I was 28, had reached my goal of becoming a sportswriter for a

large newspaper in New Orleans and had just bought a house. The day I moved in,

I had my first seizure and was taken to a hospital where I remained in a coma

for several days. When I came out the coma, I didn't recognize anyone and had to

be put in a strait jacket because I was like a wild animal trying to attrack

anyone that came near me.

You can read my entire story in the encephalitis stories page.

Your response to April that:

" ...This is just a bad period in your life. It too shall pass and better times

will come....I promise! "

Well, , sweetheart, try not to make promises that won't be fulfilled. My

life has been a total disaster and better days have not come in my case. True,

my spells are less frequent and some less intense, but I still get them and some

are still grand mals - my most recent about 48 hours ago.

I lost my house, my career, all my so-called " friends " (many of which you find

out to be fair-weather anyway), and I'm still searching for that

'ray-of-sunshine' once my storm passed.

When I got sick, I joined this group and met a young woman who was in as bad a

condition I was in. I called her and she could barely speak and she appeared to

be a lost cause. Today, she's since gotten married, had two children and has

made a complete recovery.

What I've learned since my illness is that most people do indeed improve and

can reconstruct their lives. My case, however, is what my neurologist called the

type " so rare that you had a better chance of winning the New York State Lottery

than contracting what you've got " .

I've been all over the country, seen neurologists far and wide and take what

can best be described as a pharmacy....something like six different pills daily.

As far as " friends " are concerned, I have only two true friends. And I still

have the young woman that wrote me early on as a friend. Every Christmas she

sends me a card. When I was a popular sportswriter and columnist, I had

" friends " coming out my ears wanting tickets to sports events and enjoying my

company when I was independent.

After I got sick, we all slowly drifted apart because aside from the job, we

had nothing left in common - so I'm not bitter in that regard. I understand that

it's difficult to remain friends with someone you have to be responsible for.

And at the beginning of my illness, when I'd have between 5 and 15 spells a day,

many of those friends did try to keep in touch and go out with me. But it seemed

everytime we went out, the outing would have to be cut short when I'd have a

grand mal and restaurants or public locations would call in the medics to make

sure I was OK.

So it would be an embarassment to them and they'd have to bring me home.

Anyway, the point of my story is that, yes, it's true most cases do have a

happy ending from what I understand. Unfortunately for me, however, it seems

just the opposite. I'm destined to be a prisoner in my own body for the rest of

my life as I'm approaching my 48th birthday this year.

This illness has destroyed my life physically, emotionally, psychologically

and socially. And with a loving family constantly concerned about my having a

spell anytime I'm alone and my memory also drastically impaired, there are few

things I'm left to do.

Hopefully for April, she will come out of her funk. But don't " guarantee " it

. I thought I would come out of it early on and have since found out since

that it's been dramatically just the opposite.

Mine is simply a life with no meaning. Just a man waiting to die.

pharley1@...

Your response

Re: [ ] Don't know how much more i can take

Hi April:

Welcome to a big challenge in your life NOT the end of your life. Gather all

your courage and decide that this is not going to defeat you and that you will

find a way to feel joy in your life again! Start doing research and testing what

makes you feel better or worst.

I have a few questions. What type of seizures do you have?

When did you first start feeling this sad. Can you pinpoint it to any

particular time, medication start or anything else? Have you tried to use other

natural means to reduce your amounts of medication? Your depression could be

physical or pychological. Do you do anything to improve your mood. Exercise,

good nutrition and activities that make you happy like art, music, singing,

working with animals, etc. Do you have a sweetie in your life or a puppy.

Do you work or have something in your life that gives it meaning and gets your

mind off your troubles. Do you pray or meditate? Do you take any vitamins and

minerals to help your brain do its best. Be your best detective. Write things

down and find patterns. Talk to your Dr. maybe another medication could be

better. Some people on this group have been able to get off medication just with

diet and supplements. Do a little research. Maybe you can too.

Seek and you shall find! This is just a bad period in your life. It too shall

pass and better times will come your way. I promise!

Try not eating red meat or dairy products for a week and see if you start

feeling better. Drink a lot of water and get sunshine. Read about mineral and

vitamin deficiencies and seizures. Add magnesium to your daily routine and B-50.

Make sure you get enough sleep.

Good luck,

april <akbrok@...> wrote: hi,

My name is April and I just join the group a while back. I don't come

here very often, but lately I've been feeling really bad and have

nowhere else to turn. I started having seizures back in Sept. of 2004

and ever since then I've been on 4 different (heavy) medication(almost

3,100mg a day). I can't work, I can't go anywhere alone, I don't really

have a life. Lately I've been feeling very alone and shut out and I

really don't have anyone to talk to about this. My family and frineds

don't understand so i feel so lost and alone. I guess I just wanted to

know if anyone else felt the same way I did and if so, do this feeling

ever pass....becasue i just don't know how much more i can take. If you

can help or know anything i can read that can help lift my sprits i

would be more than happy if you would let me know. thank you for you

time.

~ak

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

8:00? 8:25? 8:40? Find a flick in no time

with the Search movie showtime shortcut.

[Guest guest]

Hi ,

I am sorry you are in a funk, but don't believe it has to be that

way. I would be willing to argue that drugs may be a reason you are

in such a down state and ask that you consider making a study of side

effects of the seizure meds you are using to check this out.

You, too, are not alone. Any number of us in this group were 'worst

case scenarios' in terms of illness, intractable seizures,

and " irreversible " brain damage, yet we managed to overcome the

seizures and thrive as well.

I would never state that you can overcome your seizures but can say

with certainty that there are things you can do to reduce your risk

of having them. I know this from real life experience.

Seizures do not 'come out of the blue,' are not random acts of a

damaged nervous system. Once you acquired the brain damage, you

became more susceptible to having seizures. Basically, that means you

have a lower seizure threshold than folks without seizures. Something

has to trigger a seizure, they don't just happen by magic.

There are many ways to learn to reduce the risks of having a

seizure, to raise your seizure threshold. Even if you were thirty

years with uncontrolled seizures, I would still be able to say with

confidence that there are things you can do to reduce your risk of

having a seizure.

You really are not alone, . Several years ago I interviewed a

psychologist, Donna s, for an article on my web page. She had

encephalitis in the 60s, was comatose for weeks, had little chance of

recovering from the illness, or ever controlling her seizures. She

not only overcame them, she went on to become a psychologist and

devote her career to helping others with seizures learn to manage

them. May I suggest you read the interview

{http://www.indiana.edu/~pietsch/zoeseizure.html}?

Welcome, join in, help yourself to all the resources here. A lot

of us have been where you are now, . You are not alone, nor does

your sense of despair need to be lifelong.

Zoe

p.s. Go back and read your letter again, it's obvious you can still

write, you know!

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

Hello !

My name is and I've been a member of this group for quite some

time

although I'm not much of a contributor or do I read many of the

stories from

other members. However, in passing today, I saw your response to this

young

woman April and I can understand your response to her depression.

I've been where April is right now. Matter-of-fact, I still am to a

certain

degree. I've been sick for nearly 20 years now since I contracted a

very severe

case of encephalitis in 1988 from what I was told was a mosquito bite.

At the time, I was 28, had reached my goal of becoming a sportswriter

for a

large newspaper in New Orleans and had just bought a house. The day I

moved in,

I had my first seizure and was taken to a hospital where I remained

in a coma

for several days. When I came out the coma, I didn't recognize anyone

and had to

be put in a strait jacket because I was like a wild animal trying to

attrack

anyone that came near me.

You can read my entire story in the encephalitis stories page.

Your response to April that:

" ...This is just a bad period in your life. It too shall pass and

better times

will come....I promise! "

Well, , sweetheart, try not to make promises that won't be

fulfilled. My

life has been a total disaster and better days have not come in my

case. True,

my spells are less frequent and some less intense, but I still get

them and some are still grand mals - my most recent about 48 hours

ago.

I lost my house, my career, all my so-called " friends " (many of which

you find

out to be fair-weather anyway), and I'm still searching for that

'ray-of-sunshine' once my storm passed.

When I got sick, I joined this group and met a young woman who was in

as bad a

condition I was in. I called her and she could barely speak and she

appeared to

be a lost cause. Today, she's since gotten married, had two children

and has

made a complete recovery.

What I've learned since my illness is that most people do indeed

improve and

can reconstruct their lives. My case, however, is what my neurologist

called the

type " so rare that you had a better chance of winning the New York

State Lottery

than contracting what you've got " .

I've been all over the country, seen neurologists far and wide and

take what

can best be described as a pharmacy....something like six different

pills daily.

As far as " friends " are concerned, I have only two true friends. And

I still

have the young woman that wrote me early on as a friend. Every

Christmas she

sends me a card. When I was a popular sportswriter and columnist, I

had

" friends " coming out my ears wanting tickets to sports events and

enjoying my

company when I was independent.

After I got sick, we all slowly drifted apart because aside from the

job, we

had nothing left in common - so I'm not bitter in that regard. I

understand that

it's difficult to remain friends with someone you have to be

responsible for.

And at the beginning of my illness, when I'd have between 5 and 15

spells a day,

many of those friends did try to keep in touch and go out with me.

But it seemed

everytime we went out, the outing would have to be cut short when I'd

have a

grand mal and restaurants or public locations would call in the

medics to make

sure I was OK.

So it would be an embarassment to them and they'd have to bring me

home.

Anyway, the point of my story is that, yes, it's true most cases do

have a

happy ending from what I understand. Unfortunately for me, however,

it seems

just the opposite. I'm destined to be a prisoner in my own body for

the rest of

my life as I'm approaching my 48th birthday this year.

This illness has destroyed my life physically, emotionally,

psychologically

and socially. And with a loving family constantly concerned about my

having a

spell anytime I'm alone and my memory also drastically impaired,

there are few

things I'm left to do.

Hopefully for April, she will come out of her funk. But

don't " guarantee " it

. I thought I would come out of it early on and have since found

out since

that it's been dramatically just the opposite.

Mine is simply a life with no meaning. Just a man waiting to die.

pharley1@...

Your response

Re: [ ] Don't know how much more i can take

Hi April:

Welcome to a big challenge in your life NOT the end of your life.

Gather all

your courage and decide that this is not going to defeat you and that

you will

find a way to feel joy in your life again! Start doing research and

testing what

makes you feel better or worst.

I have a few questions. What type of seizures do you have?

When did you first start feeling this sad. Can you pinpoint it to any

particular time, medication start or anything else? Have you tried to

use other

natural means to reduce your amounts of medication? Your depression

could be

physical or pychological. Do you do anything to improve your mood.

Exercise,

good nutrition and activities that make you happy like art, music,

singing,

working with animals, etc. Do you have a sweetie in your life or a

puppy.

Do you work or have something in your life that gives it meaning and

gets your

mind off your troubles. Do you pray or meditate? Do you take any

vitamins and

minerals to help your brain do its best. Be your best detective.

Write things

down and find patterns. Talk to your Dr. maybe another medication

could be

better. Some people on this group have been able to get off

medication just with

diet and supplements. Do a little research. Maybe you can too.

Seek and you shall find! This is just a bad period in your life. It

too shall

pass and better times will come your way. I promise!

Try not eating red meat or dairy products for a week and see if you

start

feeling better. Drink a lot of water and get sunshine. Read about

mineral and

vitamin deficiencies and seizures. Add magnesium to your daily

routine and B-50.

Make sure you get enough sleep.

Good luck,

april <akbrok@...> wrote: hi,

My name is April and I just join the group a while back. I don't come

here very often, but lately I've been feeling really bad and have

nowhere else to turn. I started having seizures back in Sept. of 2004

and ever since then I've been on 4 different (heavy) medication(almost

3,100mg a day). I can't work, I can't go anywhere alone, I don't

really

have a life. Lately I've been feeling very alone and shut out and I

really don't have anyone to talk to about this. My family and frineds

don't understand so i feel so lost and alone. I guess I just wanted to

know if anyone else felt the same way I did and if so, do this feeling

ever pass....becasue i just don't know how much more i can take. If

you

can help or know anything i can read that can help lift my sprits i

would be more than happy if you would let me know. thank you for you

time.

~ak

[Guest guest]

Hi ,

is very right when she says " This is just a bad period in your life and

it too shall pass. " For we loose only when we give up on something. Do not give

up, and if you want to, you will defi get out of this. I know it is easier said

then done. But these circumstances in life can only make us stronger. You should

be glad that you have two very true friends my dear, and the fact that you

recognise this is itself a positive sign. And all those not so worthy of it are

out. For our circumstances in life will show us the Genuine people around us

from those who are not so genuine. Are we not lucky? My son too suffers from

Epilepsy, but i never let him loose faith.

I understand your Neurologist means well and must be a great Doc., but do not

forget, this world is full of miracles, and there is a force far more stronger,

and that is FAITH and God. Do not loose faith.

You yourself said you have a loving family. And you do recognise the positive

in your life. so dear, Hope to see more positive approach from you. You too can

be an inspiration to all. (Please try reading Lousie Hay,s Heal Thy Self.)

Sush.

pharl <pharley1@...> wrote:

Hello !

My name is and I've been a member of this group for quite some time

although I'm not much of a contributor or do I read many of the stories from

other members. However, in passing today, I saw your response to this young

woman April and I can understand your response to her depression.

I've been where April is right now. Matter-of-fact, I still am to a certain

degree. I've been sick for nearly 20 years now since I contracted a very severe

case of encephalitis in 1988 from what I was told was a mosquito bite.

At the time, I was 28, had reached my goal of becoming a sportswriter for a

large newspaper in New Orleans and had just bought a house. The day I moved in,

I had my first seizure and was taken to a hospital where I remained in a coma

for several days. When I came out the coma, I didn't recognize anyone and had to

be put in a strait jacket because I was like a wild animal trying to attrack

anyone that came near me.

You can read my entire story in the encephalitis stories page.

Your response to April that:

" ...This is just a bad period in your life. It too shall pass and better times

will come....I promise! "

Well, , sweetheart, try not to make promises that won't be fulfilled. My

life has been a total disaster and better days have not come in my case. True,

my spells are less frequent and some less intense, but I still get them and some

are still grand mals - my most recent about 48 hours ago.

I lost my house, my career, all my so-called " friends " (many of which you find

out to be fair-weather anyway), and I'm still searching for that

'ray-of-sunshine' once my storm passed.

When I got sick, I joined this group and met a young woman who was in as bad a

condition I was in. I called her and she could barely speak and she appeared to

be a lost cause. Today, she's since gotten married, had two children and has

made a complete recovery.

What I've learned since my illness is that most people do indeed improve and can

reconstruct their lives. My case, however, is what my neurologist called the

type " so rare that you had a better chance of winning the New York State Lottery

than contracting what you've got " .

I've been all over the country, seen neurologists far and wide and take what can

best be described as a pharmacy....something like six different pills daily.

As far as " friends " are concerned, I have only two true friends. And I still

have the young woman that wrote me early on as a friend. Every Christmas she

sends me a card. When I was a popular sportswriter and columnist, I had

" friends " coming out my ears wanting tickets to sports events and enjoying my

company when I was independent.

After I got sick, we all slowly drifted apart because aside from the job, we had

nothing left in common - so I'm not bitter in that regard. I understand that

it's difficult to remain friends with someone you have to be responsible for.

And at the beginning of my illness, when I'd have between 5 and 15 spells a day,

many of those friends did try to keep in touch and go out with me. But it seemed

everytime we went out, the outing would have to be cut short when I'd have a

grand mal and restaurants or public locations would call in the medics to make

sure I was OK.

So it would be an embarassment to them and they'd have to bring me home.

Anyway, the point of my story is that, yes, it's true most cases do have a happy

ending from what I understand. Unfortunately for me, however, it seems just the

opposite. I'm destined to be a prisoner in my own body for the rest of my life

as I'm approaching my 48th birthday this year.

This illness has destroyed my life physically, emotionally, psychologically and

socially. And with a loving family constantly concerned about my having a spell

anytime I'm alone and my memory also drastically impaired, there are few things

I'm left to do.

Hopefully for April, she will come out of her funk. But don't " guarantee " it

. I thought I would come out of it early on and have since found out since

that it's been dramatically just the opposite.

Mine is simply a life with no meaning. Just a man waiting to die.

pharley1@...

Your response

Re: [ ] Don't know how much more i can take

Hi April:

Welcome to a big challenge in your life NOT the end of your life. Gather all

your courage and decide that this is not going to defeat you and that you will

find a way to feel joy in your life again! Start doing research and testing what

makes you feel better or worst.

I have a few questions. What type of seizures do you have?

When did you first start feeling this sad. Can you pinpoint it to any particular

time, medication start or anything else? Have you tried to use other natural

means to reduce your amounts of medication? Your depression could be physical or

pychological. Do you do anything to improve your mood. Exercise, good nutrition

and activities that make you happy like art, music, singing, working with

animals, etc. Do you have a sweetie in your life or a puppy.

Do you work or have something in your life that gives it meaning and gets your

mind off your troubles. Do you pray or meditate? Do you take any vitamins and

minerals to help your brain do its best. Be your best detective. Write things

down and find patterns. Talk to your Dr. maybe another medication could be

better. Some people on this group have been able to get off medication just with

diet and supplements. Do a little research. Maybe you can too.

Seek and you shall find! This is just a bad period in your life. It too shall

pass and better times will come your way. I promise!

Try not eating red meat or dairy products for a week and see if you start

feeling better. Drink a lot of water and get sunshine. Read about mineral and

vitamin deficiencies and seizures. Add magnesium to your daily routine and B-50.

Make sure you get enough sleep.

Good luck,

april <akbrok@...> wrote: hi,

My name is April and I just join the group a while back. I don't come

here very often, but lately I've been feeling really bad and have

nowhere else to turn. I started having seizures back in Sept. of 2004

and ever since then I've been on 4 different (heavy) medication(almost

3,100mg a day). I can't work, I can't go anywhere alone, I don't really

have a life. Lately I've been feeling very alone and shut out and I

really don't have anyone to talk to about this. My family and frineds

don't understand so i feel so lost and alone. I guess I just wanted to

know if anyone else felt the same way I did and if so, do this feeling

ever pass....becasue i just don't know how much more i can take. If you

can help or know anything i can read that can help lift my sprits i

would be more than happy if you would let me know. thank you for you

time.

~ak

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

8:00? 8:25? 8:40? Find a flick in no time

with the Search movie showtime shortcut.

[Guest guest]

, Yes I do plan on doing more research, I am going to see Dr Laureman on 04/13 if it comes done between Dr Laureman or Dr LaGrone I am going with Dr Laureman so I can be close to home. Can I ask why you didn't go with Dr Laureman? As for the Fairfax doctor I know you dislike him are we sure it is the same one, I am just curious because he did my daughter and I heard nothing but good stuff about him and he did the latest procedure on her....just curious? Wagner <mscello@...> wrote: ,Please, please go see Dr. LaGrone. I know from way too much experience that Fairfax is NOT the place to have back work done. Every adult I know that has seen this doctor has run the other way!! Please go see Dr. LaGrone. He has repeated experience and this guy does not. I have had 6 back surgeries now. The first 2 at Fairfax, the second two at Hopkins, the fifth at town and the 6th at Washington Hospital Center. In 79 I had two laminectomies done at Fairfax. In 81 and 83 I had Harrington Rod surgery at Hopkins under a doctor that did mostly kids. My best friend had the same surgery with him. Both of our rods broke. Hopkins took 9 months to find my broken rod. It was not until I had an xray from the side and the rod started bulging out that they found it. They put in a small compression rod and fused L4/5 again (that's where the 2 lamis had

been). I was in horrible pain for about 6 years. I went to the Pain Clinic at Hopkins and then here locally. I saw many Fairfax docs and nobody knew what they were looking at. I finally caled Dial Doctors and ended up with a Dr. Tozzi. He took out the last rod and fused me from L5/S1 at town. It was a long surgery and I went into cardiac distress. When the brace came off 6 months later, I had NO pain. This was in 1988. I am now bending over pretty badly but for the most part my back has stayed good. Two years ago I had Dr. Tozzi do cervical laminectomies because my spinal cord was being compressed. That is fine now. Dr. Tozzi desperately wanted to complete the revision but he has not done many. I love this doctor because he is honest and a great surgeon. But I am not a guinea pig. And, I do not know if I would survive the big surgery since I ended up having my aortic valve replaced. Anyways, I did see the

Fairfax doctor and he actually did not recommend revision and I do not think he has much experience. I did see Dr, Lauerman and he did recommend the surgery. If I am ever going to do this , it will only be with the one in Boston, Dr. LaGrone or Dr. Bridwell. Somebody here just this week said - go with the experienced docs. Even though I am fused to the sacrum, I can bend, tie shoes, do my nails, swim, do water aerobics. Shopping and standing tire me and I have to sit but that is partly my knees.Sometimes these surgeons see us as a challenge and would like to do our surgeries even though they may not do many. That is why I would only go to a big name.I know you are doing your research and being very careful. Please continue to do that. (VA)

Looking for earth-friendly autos? Browse Top Cars by "Green Rating" at Autos' Green Center.

[Guest guest]

,

Well, you certainly have had a very, very hard time. I'm sorry you needed so many surgeries and maybe even one more. But you sound like you are full of spirit and I commend you for that. IMO, you gave excellent advice.

Bonnie

[ ] To

,Please, please go see Dr. LaGrone. I know from way too much experience that Fairfax is NOT the place to have back work done. Every adult I know that has seen this doctor has run the other way!! Please go see Dr. LaGrone. He has repeated experience and this guy does not. I have had 6 back surgeries now. The first 2 at Fairfax, the second two at Hopkins, the fifth at town and the 6th at Washington Hospital Center. In 79 I had two laminectomies done at Fairfax. In 81 and 83 I had Harrington Rod surgery at Hopkins under a doctor that did mostly kids. My best friend had the same surgery with him. Both of our rods broke. Hopkins took 9 months to find my broken rod. It was not until I had an xray from the side and the rod started bulging out that they found it. They put in a small compression rod and fused L4/5 again (that's where the 2 lamis had been). I was in horrible pain for about 6 years. I went to the Pain Clinic at Hopkins and then here locally. I saw many Fairfax docs and nobody knew what they were looking at. I finally caled Dial Doctors and ended up with a Dr. Tozzi. He took out the last rod and fused me from L5/S1 at town. It was a long surgery and I went into cardiac distress. When the brace came off 6 months later, I had NO pain. This was in 1988. I am now bending over pretty badly but for the most part my back has stayed good. Two years ago I had Dr. Tozzi do cervical laminectomies because my spinal cord was being compressed. That is fine now. Dr. Tozzi desperately wanted to complete the revision but he has not done many. I love this doctor because he is honest and a great surgeon. But I am not a guinea pig. And, I do not know if I would survive the big surgery since I ended up having my aortic valve replaced. Anyways, I did see the Fairfax doctor and he actually did not recommend revision and I do not think he has much experience. I did see Dr, Lauerman and he did recommend the surgery. If I am ever going to do this , it will only be with the one in Boston, Dr. LaGrone or Dr. Bridwell. Somebody here just this week said - go with the experienced docs. Even though I am fused to the sacrum, I can bend, tie shoes, do my nails, swim, do water aerobics. Shopping and standing tire me and I have to sit but that is partly my knees.Sometimes these surgeons see us as a challenge and would like to do our surgeries even though they may not do many. That is why I would only go to a big name.I know you are doing your research and being very careful. Please continue to do that. (VA)

[Guest guest]

Thank you Kathy!!!! I am about going insane here with worry, self-

doubts, then excitement about getting it done, etc. My emotions

fluctuate by the minute. My best friend came over yesterday and

helped me sort through a ton of clutter and file/organize a bunch of

paperwork. I've also pre-paid most bills until until September (since

I'll likely be gone for at least a month), organized my kids' rooms,

pre-cooked some meals for hubby, and set things up so my best friend

stops by once a week for a few hours while I'm gone to pick things up

a bit around the house. And then our dear Sharon Green called me

again last night and we talked for about an hour & a half. I

absolutely think that it is so wonderful to be able to talk to

everyone on the group, and then to talk to Sharon on the phone too!

It has helped me feel like I am as prepared as I possibly can be for

this scary, life-changing event, and that I am not alone.

And I look forward to the possibility of seeing you on the 24th! I

would really love a visit, even though I can't guarantee how coherent

I will be And you may have to remind me who you are I THINK

that they told me I would be in the " 12 East " wing, but it would

probably be best to ask either Ondra, Kathy or the info desk to be

sure.

Thanks again for your well-wishes, and I hope your appointment on the

24th goes smoothly!

>

> - I wanted to send you a big BEST WISHES and a virtual

(((HUG))) for your upcoming surgery. I'm going out of town for a day

or two, and wanted to be sure that you get the message. I will be

thinking of you, especially on Monday. If anyone can post a report

for you, please do! I will try and visit you on the 24th when I'm

there for my consult. Do you know what floor the spine patients are

on? Anyway, my vibes are coming down from the top of Lake Michigan to

the bottom and wishing you the best outcome possible!!! Kathy W.

>

> ---------------------------------

> Got a little couch potato?

> Check out fun summer activities for kids.

>

[Guest guest]

You will be fine, ! We are all behind you and lifting you up in our thoughts and prayers!

Peggy

[ ] Re: To

Thank you Kathy!!!! I am about going insane here with worry, self-doubts, then excitement about getting it done, etc. My emotions fluctuate by the minute. My best friend came over yesterday and helped me sort through a ton of clutter and file/organize a bunch of paperwork. I've also pre-paid most bills until until September (since I'll likely be gone for at least a month), organized my kids' rooms, pre-cooked some meals for hubby, and set things up so my best friend stops by once a week for a few hours while I'm gone to pick things up a bit around the house. And then our dear Sharon Green called me again last night and we talked for about an hour & a half. I absolutely think that it is so wonderful to be able to talk to everyone on the group, and then to talk to Sharon on the phone too! It has helped me feel like I am as prepared as I possibly can be for this scary, life-changing event, and that I am not alone.And I look forward to the possibility of seeing you on the 24th! I would really love a visit, even though I can't guarantee how coherent I will be And you may have to remind me who you are I THINK that they told me I would be in the "12 East" wing, but it would probably be best to ask either Ondra, Kathy or the info desk to be sure. Thanks again for your well-wishes, and I hope your appointment on the 24th goes smoothly!>> - I wanted to send you a big BEST WISHES and a virtual (((HUG))) for your upcoming surgery. I'm going out of town for a day or two, and wanted to be sure that you get the message. I will be thinking of you, especially on Monday. If anyone can post a report for you, please do! I will try and visit you on the 24th when I'm there for my consult. Do you know what floor the spine patients are on? Anyway, my vibes are coming down from the top of Lake Michigan to the bottom and wishing you the best outcome possible!!! Kathy W.> > ---------------------------------> Got a little couch potato? > Check out fun summer activities for kids.>

[Guest guest]

Lorrie,

Thanks for your response My mom is helping me out here at the

beginning. She watched the kids everyday during my hospital stay

while my husband was at work. She is taking them still this week,

and then next week she will come over here to help me watch them and

see what I need help with. That way we can sort of transition back

into the routine I had before my surgery.

To address some of the things you've mentioned (and remember that my

younger girl is 6 months older than your Jill was, which makes a

huge difference at that age!):

Thankfully, we don't have to worry about getting my younger daughter

out of a crib - she switched to a toddler bed at around 14 months

(she is " growing up " much faster than her sister, because she wants

to copy everything she sees her sister doing...) Another reason we

switched her so early was because I couldn't safely pick her up to

hoist her out of a crib back then due to MS strength & balance

issues. I definately understand your frustration though with not

being able to get her up yourself. What did you do with her during

naptimes when you couldn't lift her up & out of the crib?

I really admire you being able to get down on your knees to change

diapers and sift cat litter! My legs ache terribly when I try to

bend the knees too much. You're amazing for doing that over & over

again to take care of your daughter

Step stools are awesome My kids both love using them! The older

one can get high enough to see things on the kitchen counter

& " help " me prepare dinner (pre-surgery of course!!) and the younger

one loves to drag one around and turn all the light swtiches on &

off in the house. And they both use them to get up on stuff that I

cannot lift them up for.

Thanks for the tip on hiring a local tween! I'll have to search

around our neighborhood. I hadn't thought of that before! If I

can't find one right here, my mom (who now lives only a block away)

teaches piano lessons, and I'm sure she has a student or two who

would love to help out

How are you doing overall now with childcare-related stuff? How is

your back doing? And are you a stay-at-home mom, or do you work?

Thanks again!

>

> Dear - I'm so glad you are doing well. Yes, it is so hard

to have a

> young child and have revision surgery and you have 2 young

children! My

> goodness! I was so fortunate to have my mom take care of my 18th

month old

> (at the time of surgery) when I was in the hospital for over 2

weeks. I came

> home to my mom's after the surgery for about another 2 weeks

before we (my

> mom, husband and Jill) came back home to land. My mom stayed

with me

> for just under 2 months.

>

> Jill was definitely still in diapers when I was home alone with

her and my

> husband went to work. I wasn't allowed to pick her up from coming

home in

> December till March 17th of 2005. I had to get up with my husband

at about

> 6 AM each day so he could lift her out of the crib. Jill was able

to climb

> up into the high chair by getting on another chair and into the

high chair.

> As far as diapers - even though my legs ached terribly I had to

get down on

> my knees and sit on my legs to change her diaper. It was sooooo

hard to get

> up and down. I was also cleaning out the cat litter box too! I

guess it

> was kind of good for my legs and helped strengthen them. I had to

basically

> get down on the floor to dress Jill too. One of my cat's also was

very old

> and missed the litter box frequently and I had to clean up his

messes. I

> was in tears lots of time. I'm sure I was suppose to be on an

> antidepressant back then - oh well better late than never.

>

> I really didn't go anywhere with Jill for those winter months

because I

> couldn't get her in and out of the car seat. If I needed to go

somewhere I

> took a Rubbermaid step stool for her to climb on and get into the

car - that

> worked really well. I'm thinking of using it again because she

weighs about

> 33 lbs now! She always wants me to lift her up! Good for the

biceps but

> not the back.

>

> If your daughter will climb up onto a table I would highly

recommend it -

> just work with it the best you can. Everyone advised me to have a

mother's

> helper - I would recommend it even though I didn't have one. But,

if you

> have a tween in your neighborhood that can help you clean up or

just play

> with the kids it would be a relief.

>

>

>

> All the Best!

>

>

>

> Lorrie Snyder

[Guest guest]

Hi – Yes nap time! We had

to figure something out. Jilly was taking naps in her playpen but I wouldn’t

be able to bend over to get her out. So we got a foam mattress topper and I

cut it to be able to put a crib sheet over it. I placed it on the floor

between the coffee table and the sofa. Jill likes me to tickle and scratch her

back (it makes her relax and sleepy) – she would lie on the “sleepy

time mat” (I called it) and I would lie on the sofa and I would read her

books (sometimes 15 of them!) and then scratch and tickle her and she would

fall asleep and hopefully I would get a nap too. That worked pretty good.

I still get really tired trying to keep up

with Jill all day especially on the weekends. I went back to work as a legal

secretary and it has been really good for me. I actually get to sit down for

about 7 hours everyday – a lot more rest and making money at the same

time! I’ve been back at work for about 4 months now – it is really

good for me mentally. Jilly goes to an all day daycare – I drop her off

at about 8 AM and my husband picks her up at about 4:15. She loves it –

and has lots of friends – so now I don’t feel too guilty about keeping

her occupied all day long – I just can’t do it – she needed

friends and some socialization! So it is good for everyone all around.

All the best – keep me updated!

Lorrie Snyder

From: [mailto: ] On Behalf Of rebeccamaas

Sent: Monday, August 27, 2007

11:06 AM

Subject: [ ] Re: To

Lorrie,

Thanks for your response My mom is helping me out here at the

beginning. She watched the kids everyday during my hospital stay

while my husband was at work. She is taking them still this week,

and then next week she will come over here to help me watch them and

see what I need help with. That way we can sort of transition back

into the routine I had before my surgery.

To address some of the things you've mentioned (and remember that my

younger girl is 6 months older than your Jill was, which makes a

huge difference at that age!):

Thankfully, we don't have to worry about getting my younger daughter

out of a crib - she switched to a toddler bed at around 14 months

(she is " growing up " much faster than her sister, because she wants

to copy everything she sees her sister doing...) Another reason we

switched her so early was because I couldn't safely pick her up to

hoist her out of a crib back then due to MS strength & balance

issues. I definately understand your frustration though with not

being able to get her up yourself. What did you do with her during

naptimes when you couldn't lift her up & out of the crib?

I really admire you being able to get down on your knees to change

diapers and sift cat litter! My legs ache terribly when I try to

bend the knees too much. You're amazing for doing that over & over

again to take care of your daughter

Step stools are awesome My kids both love using them! The older

one can get high enough to see things on the kitchen counter

& " help " me prepare dinner (pre-surgery of course!!) and the

younger

one loves to drag one around and turn all the light swtiches on &

off in the house. And they both use them to get up on stuff that I

cannot lift them up for.

Thanks for the tip on hiring a local tween! I'll have to search

around our neighborhood. I hadn't thought of that before! If I

can't find one right here, my mom (who now lives only a block away)

teaches piano lessons, and I'm sure she has a student or two who

would love to help out

How are you doing overall now with childcare-related stuff? How is

your back doing? And are you a stay-at-home mom, or do you work?

Thanks again!

>

> Dear - I'm so glad you are doing well. Yes, it is so hard

to have a

> young child and have revision surgery and you have 2 young

children! My

> goodness! I was so fortunate to have my mom take care of my 18th

month old

> (at the time of surgery) when I was in the hospital for over 2

weeks. I came

> home to my mom's after the surgery for about another 2 weeks

before we (my

> mom, husband and Jill) came back home to land. My mom stayed

with me

> for just under 2 months.

>

> Jill was definitely still in diapers when I was home alone with

her and my

> husband went to work. I wasn't allowed to pick her up from coming

home in

> December till March 17th of 2005. I had to get up with my husband

at about

> 6 AM each day so he could lift her out of the crib. Jill was able

to climb

> up into the high chair by getting on another chair and into the

high chair.

> As far as diapers - even though my legs ached terribly I had to

get down on

> my knees and sit on my legs to change her diaper. It was sooooo

hard to get

> up and down. I was also cleaning out the cat litter box too! I

guess it

> was kind of good for my legs and helped strengthen them. I had to

basically

> get down on the floor to dress Jill too. One of my cat's also was

very old

> and missed the litter box frequently and I had to clean up his

messes. I

> was in tears lots of time. I'm sure I was suppose to be on an

> antidepressant back then - oh well better late than never.

>

> I really didn't go anywhere with Jill for those winter months

because I

> couldn't get her in and out of the car seat. If I needed to go

somewhere I

> took a Rubbermaid step stool for her to climb on and get into the

car - that

> worked really well. I'm thinking of using it again because she

weighs about

> 33 lbs now! She always wants me to lift her up! Good for the

biceps but

> not the back.

>

> If your daughter will climb up onto a table I would highly

recommend it -

> just work with it the best you can. Everyone advised me to have a

mother's

> helper - I would recommend it even though I didn't have one. But,

if you

> have a tween in your neighborhood that can help you clean up or

just play

> with the kids it would be a relief.

>

>

>

> All the Best!

>

>

>

> Lorrie Snyder

[Guest guest]

, My revison surgery relieved my SI pressure. Other than getting easily fatigues and achy surgical pain, I actually feel better. I can stand up straight and don't have the intense pain down my left leg as before. Will your surgery be in one day or staged? I know it is a nervous time, but you will feel so great to get it behind you. Melindaluv2icesk8lots <luv2icesk8lots@...> wrote: Just wanted to let everyone know that I got a tentative date for surgery of November 14th. This will most

likely remain the date, but is tent. because we are waiting for a prior auth from insurance still. I am excited yet nervous. I can't wait to *hopefully* regain some semblance of a "normal" life again. I would like to have A LOT less pain and be able to function in the world again rather than being trapped in my house most of the day. Does this surgery help to relieve some of the pressure from the SI joints? It feels like my SI's are going to explode, and I don't know if it is from the bent forward position, or if they are starting to wear down a bit (I did see some wear in a CT scan I had recently, but the doc didn't seem worried about it) or a combo of the two. Hope everyone is having a great week...wed is already here.

Shape in your own image. Join our Network Research Panel today!

[Guest guest]

Melinda,

My surgery is going to be done all in one day. The surgeon is only

going to remove my " new " old hardware because my 3rd surgery was an

extension of the first surgery. I have a connecting piece that

connects my rod from L2 down to L5 so that piece can be easily

removed. Luckily the whole piece does not have to come out all the

way up to T4 (praise the lord!!!!).

> Just wanted to let everyone know that I got a tentative

date for

> surgery of November 14th. This will most likely remain the date,

but is

> tent. because we are waiting for a prior auth from insurance still.

> I am excited yet nervous. I can't wait to *hopefully* regain some

> semblance of a " normal " life again. I would like to have A LOT less

> pain and be able to function in the world again rather than being

> trapped in my house most of the day.

> Does this surgery help to relieve some of the pressure from the SI

> joints? It feels like my SI's are going to explode, and I don't

know if

> it is from the bent forward position, or if they are starting to

wear

> down a bit (I did see some wear in a CT scan I had recently, but

the

> doc didn't seem worried about it) or a combo of the two.

> Hope everyone is having a great week...wed is already here.

>

>

>

>

>

>

>

> ---------------------------------

> Shape in your own image. Join our Network Research Panel

today!

>

[Guest guest]

Hi, That is so great you are starting to stop thinking about how to move, I thought that day would never come to me and it finally has come. I know can go about half a day without thinking about my back and what is even better is I find myself not asking the question "Will that hurt if I do it?" About the 4th month out is when I could really starting bending with my knees to pick something up without holding on to something. So hopefully the time will come for you, its almost second nature to me now. The pain I still have is in my left butt too, mine is in the upper butt. I started physical therapy so I am hoping that as I build my muscles it will stop hurting. Walking is the best you can do for yourself for so many reasons. So when you can I would really try even if its a little, something is better then nothing. Yes your right the lowest for Oxycontin is 10mg. But that is great you feel

you can start tapering off now. You are doing it alot sooner then I did. I am doing good (well really more then good), thank you for asking it is nice to be asked. As I said I started PT last week it is going good so far I am a little sore but no pain after wards. I am still on a small dose of pain medication because of the pain I am having in my left butt and left leg. I went to a new primary care doctor and I was taking off Cymbalta and Welbutrin. I have been put on Effexor ER and I must say that has helped me so much. For the first time in a long time, I am doing my make-up ,hair and trying to dress real nice for work, also I have a lot more energy. If it was not for the pain I would honestly say I am doing great. But, I am trying to be positive and have positive thinking and I know the pain will go away. I went to my PCP today and he said that in 2 months we our going to start tapering me off of everything, I never took medication

prior to surgery so that is my goal to be off of everything......Disclaimer "That is my thoughts and there is nothing wrong if I do have to stay on something for the rest of my life". I just want to find myself again, I loved myself. There is nothing wrong with setting the bar high, if you don't how will you ever know......that's my thinking. You do sound like you are doing good, and I pray that it continues. For what ever reason if your road to recovery happens to curve, just remember and be patient it will go straight again. Elaine Wilkinson <ebwilkie@...> wrote: Hi - I don't know what happened but I did reply to your question a few days ago and it never showed up on the site.Your right, I haven't posted lately, but I've been reading all the posts. I'm doing OK, I'm now 6 weeks post-op. I think I'm getting back to my old self because I find myself moving without having to think about how to move. I've always used the barrel roll out of bed so that came easily but I struggle with not bending to pick things up. If there is something close by that I can hold on to, I do deep knee bends and pull myself up with my arms, otherwise I use my grabber. The only pain I have is in my left butt and it comes on late in the day and in the evening, especially if I have done alot. The doctor wants me to walk a lot so I'm hoping this will

work itself out. I sleep well at night and I think I'm doing well for 6 weeks. I've been all day shopping a couple of times and I don't miss anything that's going on. I have decreased my pain meds from 3 40mg. oxycontin to 2 40 mg. and when I saw the surgeon I asked for 20mg. and I now am on 3 of those. Next week I plan to go to 2 20 mg. and when I see my family doctor at the end of the month I am going to ask for 10 mg. so I can drop down to nothing with those. I don't think they come any lower than 10 mg. do they? This is my plan, I hope my body agrees with my brain. Of course I am still on my fentenyl patch. The pain management team at the hospital told me to ease my way off the oxycontin and to keep my fentenyl patch on as usual. If I can go completely off the oxycontin, I will try to reduce the mg. of the patch. I was told that I would never be pain free before surgery, but my husband says the doctor told

him after surgery that he had removed alot of arthritis from my spine and with the correction, he expects me to have alot less pain. Therefore, my wish is to get off the patch also, and maybe just take an oral pain reliever when necessary. I know I have set the bar high but I will never know if I don't try.How are you doing, ? I hope things have worked themselves out and you are well on your way in your recovery. Thank you for asking how I am doing, its always nice to know someone is thinking about you. Elaine Happy Holidays

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

[Guest guest]

Elaine, It is wonderful to hear your doing so well. I am 10 weeks post op. I am on my second day without any oxycontin. That was a big step for me! I am taking 4 percocet (5-325) in a twenty four hour period. I like you, do some deep knee bending and holding on. If not for the hip pain I would not have any pain. Again it is nice to hear you are doing great. Have a nice Holiday, SheialElaine Wilkinson <ebwilkie@...> wrote: Hi - I don't know

what happened but I did reply to your question a few days ago and it never showed up on the site.Your right, I haven't posted lately, but I've been reading all the posts. I'm doing OK, I'm now 6 weeks post-op. I think I'm getting back to my old self because I find myself moving without having to think about how to move. I've always used the barrel roll out of bed so that came easily but I struggle with not bending to pick things up. If there is something close by that I can hold on to, I do deep knee bends and pull myself up with my arms, otherwise I use my grabber. The only pain I have is in my left butt and it comes on late in the day and in the evening, especially if I have done alot. The doctor wants me to walk a lot so I'm hoping this will work itself out. I sleep well at night and I think I'm doing well for 6 weeks. I've been all day shopping a couple of times and I don't miss anything that's going on.

I have decreased my pain meds from 3 40mg. oxycontin to 2 40 mg. and when I saw the surgeon I asked for 20mg. and I now am on 3 of those. Next week I plan to go to 2 20 mg. and when I see my family doctor at the end of the month I am going to ask for 10 mg. so I can drop down to nothing with those. I don't think they come any lower than 10 mg. do they? This is my plan, I hope my body agrees with my brain. Of course I am still on my fentenyl patch. The pain management team at the hospital told me to ease my way off the oxycontin and to keep my fentenyl patch on as usual. If I can go completely off the oxycontin, I will try to reduce the mg. of the patch. I was told that I would never be pain free before surgery, but my husband says the doctor told him after surgery that he had removed alot of arthritis from my spine and with the correction, he expects me to have alot less pain. Therefore, my wish is to get off

the patch also, and maybe just take an oral pain reliever when necessary. I know I have set the bar high but I will never know if I don't try.How are you doing, ? I hope things have worked themselves out and you are well on your way in your recovery. Thank you for asking how I am doing, its always nice to know someone is thinking about you. Elaine

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[Guest guest]

Hi Sheila -

Glad to hear that you've been able to wean yourself off the

oxycontin. That is my hope for myself in the near future. When you

say you have hip pain, do you mean in the hip joint itself or in the

buttock? I have pain in the left buttock and it goes down my left

leg. I know has this problem too and I'm wondering if it is

common. I'm a bit worried that I may have done something to the

surgery site to cause this pain. I was just getting over the surgery

pain and bamm - this starts.

Again, I'm glad to hear the oxycontin is history and I hope we

all get rid of our other pains. Merry Christmas - Elaine

> Hi - I don't know what happened but I did reply to your

question a

> few days ago and it never showed up on the site.

>

> Your right, I haven't posted lately, but I've been reading all

> the posts. I'm doing OK, I'm now 6 weeks post-op. I think I'm

> getting back to my old self because I find myself moving without

> having to think about how to move. I've always used the barrel roll

> out of bed so that came easily but I struggle with not bending to

> pick things up. If there is something close by that I can hold on

> to, I do deep knee bends and pull myself up with my arms, otherwise

I

> use my grabber. The only pain I have is in my left butt and it

comes

> on late in the day and in the evening, especially if I have done

> alot. The doctor wants me to walk a lot so I'm hoping this will

work

> itself out. I sleep well at night and I think I'm doing well for 6

> weeks. I've been all day shopping a couple of times and I don't

miss

> anything that's going on.

>

> I have decreased my pain meds from 3 40mg. oxycontin to 2 40 mg.

> and when I saw the surgeon I asked for 20mg. and I now am on 3 of

> those. Next week I plan to go to 2 20 mg. and when I see my family

> doctor at the end of the month I am going to ask for 10 mg. so I

can

> drop down to nothing with those. I don't think they come any lower

> than 10 mg. do they? This is my plan, I hope my body agrees with my

> brain. Of course I am still on my fentenyl patch. The pain

> management team at the hospital told me to ease my way off the

> oxycontin and to keep my fentenyl patch on as usual. If I can go

> completely off the oxycontin, I will try to reduce the mg. of the

> patch. I was told that I would never be pain free before surgery,

> but my husband says the doctor told him after surgery that he had

> removed alot of arthritis from my spine and with the correction, he

> expects me to have alot less pain. Therefore, my wish is to get off

> the patch also, and maybe just take an oral pain reliever when

> necessary. I know I have set the bar high but I will never know if

I

> don't try.

>

> How are you doing, ? I hope things have worked themselves

> out and you are well on your way in your recovery. Thank you for

> asking how I am doing, its always nice to know someone is thinking

> about you. Elaine

>

>

>

>

>

>

> ---------------------------------

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

Try it now.

>

[Guest guest]

Elaine,

I also had pain in my left hip region for awhile after surgery and my left leg was significantly weaker. It slowly got better after having PT to strengthen my weaker leg. Hip/leg pain seems to be fairly common among us after surgery.

Peggy

[ ] Re: To

Hi Sheila -Glad to hear that you've been able to wean yourself off the oxycontin. That is my hope for myself in the near future. When you say you have hip pain, do you mean in the hip joint itself or in the buttock? I have pain in the left buttock and it goes down my left leg. I know has this problem too and I'm wondering if it is common. I'm a bit worried that I may have done something to the surgery site to cause this pain. I was just getting over the surgery pain and bamm - this starts. Again, I'm glad to hear the oxycontin is history and I hope we all get rid of our other pains. Merry Christmas - Elaine> Hi - I don't know what happened but I did reply to your question a > few days ago and it never showed up on the site.> > Your right, I haven't posted lately, but I've been reading all > the posts. I'm doing OK, I'm now 6 weeks post-op. I think I'm > getting back to my old self because I find myself moving without > having to think about how to move. I've always used the barrel roll > out of bed so that came easily but I struggle with not bending to > pick things up. If there is something close by that I can hold on > to, I do deep knee bends and pull myself up with my arms, otherwise I > use my grabber. The only pain I have is in my left butt and it comes > on late in the day and in the evening, especially if I have done > alot. The doctor wants me to walk a lot so I'm hoping this will work > itself out. I sleep well at night and I think I'm doing well for 6 > weeks. I've been all day shopping a couple of times and I don't miss > anything that's going on. > > I have decreased my pain meds from 3 40mg. oxycontin to 2 40 mg. > and when I saw the surgeon I asked for 20mg. and I now am on 3 of > those. Next week I plan to go to 2 20 mg. and when I see my family > doctor at the end of the month I am going to ask for 10 mg. so I can > drop down to nothing with those. I don't think they come any lower > than 10 mg. do they? This is my plan, I hope my body agrees with my > brain. Of course I am still on my fentenyl patch. The pain > management team at the hospital told me to ease my way off the > oxycontin and to keep my fentenyl patch on as usual. If I can go > completely off the oxycontin, I will try to reduce the mg. of the > patch. I was told that I would never be pain free before surgery, > but my husband says the doctor told him after surgery that he had > removed alot of arthritis from my spine and with the correction, he > expects me to have alot less pain. Therefore, my wish is to get off > the patch also, and maybe just take an oral pain reliever when > necessary. I know I have set the bar high but I will never know if I > don't try.> > How are you doing, ? I hope things have worked themselves > out and you are well on your way in your recovery. Thank you for > asking how I am doing, its always nice to know someone is thinking > about you. Elaine> > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with Mobile. Try it now.>

[Guest guest]

Hello again Elaine, My pain is in my tail bone and across the buttocks. I am sure it is the healing process, because the pain is not constant. Take care, SheilaElaine Wilkinson <ebwilkie@...> wrote: Hi Sheila -Glad to hear that you've been able to wean yourself off the oxycontin. That is my hope for myself in the near future. When you say you have hip pain, do you mean in the hip joint itself or in the buttock? I have pain in the left buttock and it goes

down my left leg. I know has this problem too and I'm wondering if it is common. I'm a bit worried that I may have done something to the surgery site to cause this pain. I was just getting over the surgery pain and bamm - this starts. Again, I'm glad to hear the oxycontin is history and I hope we all get rid of our other pains. Merry Christmas - Elaine> Hi - I don't know what happened but I did reply to your question a > few days ago and it never showed up on the site.> > Your right, I haven't posted lately, but I've been reading all > the posts. I'm doing OK, I'm now 6 weeks post-op. I think I'm > getting back to my old self because I find myself moving without > having to think about how to move. I've always used the barrel roll > out of bed so that came easily but I struggle with not bending to > pick things up. If there is something close by that I can hold on > to, I do deep knee bends and pull myself up with my arms, otherwise I > use my grabber. The only pain I have is in my left butt and it comes > on late in the day and in the evening, especially if I have done > alot. The doctor wants me to walk a lot so I'm hoping this

will work > itself out. I sleep well at night and I think I'm doing well for 6 > weeks. I've been all day shopping a couple of times and I don't miss > anything that's going on. > > I have decreased my pain meds from 3 40mg. oxycontin to 2 40 mg. > and when I saw the surgeon I asked for 20mg. and I now am on 3 of > those. Next week I plan to go to 2 20 mg. and when I see my family > doctor at the end of the month I am going to ask for 10 mg. so I can > drop down to nothing with those. I don't think they come any lower > than 10 mg. do they? This is my plan, I hope my body agrees with my > brain. Of course I am still on my fentenyl patch. The pain > management team at the hospital told me to ease my way off the > oxycontin and to keep my fentenyl patch on as usual. If I can go > completely off the oxycontin, I will try to reduce the mg. of the > patch. I was

told that I would never be pain free before surgery, > but my husband says the doctor told him after surgery that he had > removed alot of arthritis from my spine and with the correction, he > expects me to have alot less pain. Therefore, my wish is to get off > the patch also, and maybe just take an oral pain reliever when > necessary. I know I have set the bar high but I will never know if I > don't try.> > How are you doing, ? I hope things have worked themselves > out and you are well on your way in your recovery. Thank you for > asking how I am doing, its always nice to know someone is thinking > about you. Elaine> > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with Mobile. Try it now.>

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[Guest guest]

Hi ,

Thanks! Sorry to hear that you're still having such pain problems. I

was really hoping that the screw removal would have taken care of that

for you. My back is doing well overall, but my MS isn't. I hope you

find some relief soon.

>

> Hi, glad your latest surgery went well. I really hope your doing well!

>

>

[Guest guest]

I was on Humira for about 2 months and I started to feel more

energetic and could actually get out of the car by my self again.

I love to go shopping by myself when I am down, and for the last 2

years I haven't been able to get out of car alone, too low. I also

have diabetes and ended up with infections and they took me off all

my meds now...........I cant even be on Motrin that helps the

swelling, so now I am back to square one again, stuck at home all the

time. I will not give up though, someone told me in this group that

I need to find something to laugh about everyday, and it helps...It

does help to know you are not alone, other people in this group can

relate to my problems with PA Thanks for your reply and advise it

helps....... Spacytracy