RE: surgery

[Guest guest]

Hopefully, they will not only remove disks & any other stuff you

have that doesn't belong; but also make sure the nerve channels are free.

This would not only provide pain relief, but protect you to some degree

from negative changes should arthritic growth & fibrosis accumulate at the

surgery sites as you age.

It is possibly you will need more surgery later to clear out the

potential arthritic deposits in the area of surgery. This is not a big

deal; but it is not often mentioned and people who have back surgery often

don't know that if post surgical problems interfere 10 years down the road,

docs are prepared to do something about it.

Good luck with the preparations & surgery. It scared me to the

extent that I put it off for a year.

Ken

At 07:17 PM 11/1/00 -0500, & Hunter-Kilmer wisely said:

>I'm having surgery to remove the appropriate stuff. The

>rheumatologist says the herniation is so big surgery is the only

>answer.

>

>Please do not tell me about alternatives,especially non-western

>ones. I'm a nurse, I know what the risks are. They are

>considerable less at L5-S1 than up higher, and I sort of like the

>idea of not being in terriblepain all the time. Go figure.

>

>

>

>

>hkonline@...

>

>

>Know someone who could profit from our list? Send our direct sign-up

>URL: /subscribe.cgi/chronic_pain or write us at:

>chronic_pain-listowneregroups

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[Guest guest]

, we'll be thinking about you & keep you in our prayers. Give a

hug & kiss from us.

& Toni

Cody Colton

Age 6

75 lbs. 4 " 1inches tall 2 WW shoe

Perventricular Bilaterial Nodular Heterophia & Polymicrogyria

Medication Dialantin 200 mg's per day

Seizures that shut down his resperatory system when his trough level gets to

16 or below. Running a temperature effects his trough level lowering it by

two points.

Favorite things: Spending the night with the grandparents, watching videos &

being outside & giving all of daddy's kisses to his momma.

[Guest guest]

Hi ,

Just noticed your comment about the keto diet and wondered what it was in

particular that was putting you off. I'm not saying that it is the most perfect

treatment, but sure beats meds in my mind. I guess we all have to evaluate it in

the light of our own child's problems, and I am really really sad to be forced

to wean the diet, for now anyway. In the end, its not until we actually commit

to trying any of these treatments, (meds, diet, surgery, etc) that we know how

it will affect the child concerned. Meds and diet are reversible .....

surgery......?

The diet sure has allowed many people to wean their kids' meds, or to at least

reduce the doses. Even though it didnt give Hannah great seizure control, it

did help enormously, as is evidenced by the rapid escalation in seizures since

beginning to wean the diet a week ago. It also allowed us to totally wean one of

the 3 meds she was on when the diet started.

Obviously I am a fan of the diet, and by writing all this I am not trying to

persuade anyone one way or another, rather just wanting to give my personal view

of it. I wish you well as you endeavour to make the best choices for and

her seizures. It is a very rocky road we are all walking, hey?

BTW, surgery is not an option for Hannah, as her PMG is bilateral and wide

spread, and sz's are many and varied. Hope you get lots of info on that option

to help you decide.

Hugs

(Hannah's mum, Australia)

----- Original Message -----

From: ajbdvm

's seizures seem to continue having now been on Phenobarbital,

Trileptal (grouchy drug), and now Topomax. She is currently on all

3, trying to wean off the Trileptal.

Her seizures are short, occurring over about 30 seconds 1-3 times

per day, but she can't breathe during them, and that bothers me.

I am considering the ketogenic diet, but after lurking in the

ketogenic diet's yahoo group, I am getting worried that the diet may

cause as many problems as the medications; maybe more?

Her neurologist had said step 3 (after meds and ketogenic diet)

would be referral for surgery to remove the portion of the brain

responsible for her seizures.

Have any of you had this done? Did it help?

Thanks.

- Bivens, FL

mother to , cortical dysplasia (still waiting for Dr. Dobyns'

report to further diagnose)

[Guest guest]

Hi ,

Just noticed your comment about the keto diet and wondered what it was in

particular that was putting you off. I'm not saying that it is the most perfect

treatment, but sure beats meds in my mind. I guess we all have to evaluate it in

the light of our own child's problems, and I am really really sad to be forced

to wean the diet, for now anyway. In the end, its not until we actually commit

to trying any of these treatments, (meds, diet, surgery, etc) that we know how

it will affect the child concerned. Meds and diet are reversible .....

surgery......?

The diet sure has allowed many people to wean their kids' meds, or to at least

reduce the doses. Even though it didnt give Hannah great seizure control, it

did help enormously, as is evidenced by the rapid escalation in seizures since

beginning to wean the diet a week ago. It also allowed us to totally wean one of

the 3 meds she was on when the diet started.

Obviously I am a fan of the diet, and by writing all this I am not trying to

persuade anyone one way or another, rather just wanting to give my personal view

of it. I wish you well as you endeavour to make the best choices for and

her seizures. It is a very rocky road we are all walking, hey?

BTW, surgery is not an option for Hannah, as her PMG is bilateral and wide

spread, and sz's are many and varied. Hope you get lots of info on that option

to help you decide.

Hugs

(Hannah's mum, Australia)

----- Original Message -----

From: ajbdvm

's seizures seem to continue having now been on Phenobarbital,

Trileptal (grouchy drug), and now Topomax. She is currently on all

3, trying to wean off the Trileptal.

Her seizures are short, occurring over about 30 seconds 1-3 times

per day, but she can't breathe during them, and that bothers me.

I am considering the ketogenic diet, but after lurking in the

ketogenic diet's yahoo group, I am getting worried that the diet may

cause as many problems as the medications; maybe more?

Her neurologist had said step 3 (after meds and ketogenic diet)

would be referral for surgery to remove the portion of the brain

responsible for her seizures.

Have any of you had this done? Did it help?

Thanks.

- Bivens, FL

mother to , cortical dysplasia (still waiting for Dr. Dobyns'

report to further diagnose)

[Guest guest]

Thank you Gavan for your response to my question. Quite honestly, I would like

someone to talk me into the diet.

The posts in the list are what scare me. It seems like a few people have good

control, and a lot more people have problems with drug toxicities, ketones being

too high or too low; and naturally, Hannah's pancreatitis scares me a lot.

I can't imagine what she, you, and the rest of your family have gone and are

going through lately.

I still am going to keep my appointment mid August with the new neurologist, and

I will weigh my options when I meet with him.

Thanks again. I wish you and Hannah well.

- Bivens

Re: surgery

Hi ,

Just noticed your comment about the keto diet and wondered what it was in

particular that was putting you off. I'm not saying that it is the most perfect

treatment, but sure beats meds in my mind. I guess we all have to evaluate it in

the light of our own child's problems, and I am really really sad to be forced

to wean the diet, for now anyway. In the end, its not until we actually commit

to trying any of these treatments, (meds, diet, surgery, etc) that we know how

it will affect the child concerned. Meds and diet are reversible .....

surgery......?

The diet sure has allowed many people to wean their kids' meds, or to at least

reduce the doses. Even though it didnt give Hannah great seizure control, it

did help enormously, as is evidenced by the rapid escalation in seizures since

beginning to wean the diet a week ago. It also allowed us to totally wean one of

the 3 meds she was on when the diet started.

Obviously I am a fan of the diet, and by writing all this I am not trying to

persuade anyone one way or another, rather just wanting to give my personal view

of it. I wish you well as you endeavour to make the best choices for and

her seizures. It is a very rocky road we are all walking, hey?

BTW, surgery is not an option for Hannah, as her PMG is bilateral and wide

spread, and sz's are many and varied. Hope you get lots of info on that option

to help you decide.

Hugs

(Hannah's mum, Australia)

----- Original Message -----

From: ajbdvm

's seizures seem to continue having now been on Phenobarbital,

Trileptal (grouchy drug), and now Topomax. She is currently on all

3, trying to wean off the Trileptal.

Her seizures are short, occurring over about 30 seconds 1-3 times

per day, but she can't breathe during them, and that bothers me.

I am considering the ketogenic diet, but after lurking in the

ketogenic diet's yahoo group, I am getting worried that the diet may

cause as many problems as the medications; maybe more?

Her neurologist had said step 3 (after meds and ketogenic diet)

would be referral for surgery to remove the portion of the brain

responsible for her seizures.

Have any of you had this done? Did it help?

Thanks.

- Bivens, FL

mother to , cortical dysplasia (still waiting for Dr. Dobyns'

report to further diagnose)

[Guest guest]

Thank you Gavan for your response to my question. Quite honestly, I would like

someone to talk me into the diet.

The posts in the list are what scare me. It seems like a few people have good

control, and a lot more people have problems with drug toxicities, ketones being

too high or too low; and naturally, Hannah's pancreatitis scares me a lot.

I can't imagine what she, you, and the rest of your family have gone and are

going through lately.

I still am going to keep my appointment mid August with the new neurologist, and

I will weigh my options when I meet with him.

Thanks again. I wish you and Hannah well.

- Bivens

Re: surgery

Hi ,

Just noticed your comment about the keto diet and wondered what it was in

particular that was putting you off. I'm not saying that it is the most perfect

treatment, but sure beats meds in my mind. I guess we all have to evaluate it in

the light of our own child's problems, and I am really really sad to be forced

to wean the diet, for now anyway. In the end, its not until we actually commit

to trying any of these treatments, (meds, diet, surgery, etc) that we know how

it will affect the child concerned. Meds and diet are reversible .....

surgery......?

The diet sure has allowed many people to wean their kids' meds, or to at least

reduce the doses. Even though it didnt give Hannah great seizure control, it

did help enormously, as is evidenced by the rapid escalation in seizures since

beginning to wean the diet a week ago. It also allowed us to totally wean one of

the 3 meds she was on when the diet started.

Obviously I am a fan of the diet, and by writing all this I am not trying to

persuade anyone one way or another, rather just wanting to give my personal view

of it. I wish you well as you endeavour to make the best choices for and

her seizures. It is a very rocky road we are all walking, hey?

BTW, surgery is not an option for Hannah, as her PMG is bilateral and wide

spread, and sz's are many and varied. Hope you get lots of info on that option

to help you decide.

Hugs

(Hannah's mum, Australia)

----- Original Message -----

From: ajbdvm

's seizures seem to continue having now been on Phenobarbital,

Trileptal (grouchy drug), and now Topomax. She is currently on all

3, trying to wean off the Trileptal.

Her seizures are short, occurring over about 30 seconds 1-3 times

per day, but she can't breathe during them, and that bothers me.

I am considering the ketogenic diet, but after lurking in the

ketogenic diet's yahoo group, I am getting worried that the diet may

cause as many problems as the medications; maybe more?

Her neurologist had said step 3 (after meds and ketogenic diet)

would be referral for surgery to remove the portion of the brain

responsible for her seizures.

Have any of you had this done? Did it help?

Thanks.

- Bivens, FL

mother to , cortical dysplasia (still waiting for Dr. Dobyns'

report to further diagnose)

[Guest guest]

Thank you Gavan for your response to my question. Quite honestly, I would like

someone to talk me into the diet.

The posts in the list are what scare me. It seems like a few people have good

control, and a lot more people have problems with drug toxicities, ketones being

too high or too low; and naturally, Hannah's pancreatitis scares me a lot.

I can't imagine what she, you, and the rest of your family have gone and are

going through lately.

I still am going to keep my appointment mid August with the new neurologist, and

I will weigh my options when I meet with him.

Thanks again. I wish you and Hannah well.

- Bivens

Re: surgery

Hi ,

Just noticed your comment about the keto diet and wondered what it was in

particular that was putting you off. I'm not saying that it is the most perfect

treatment, but sure beats meds in my mind. I guess we all have to evaluate it in

the light of our own child's problems, and I am really really sad to be forced

to wean the diet, for now anyway. In the end, its not until we actually commit

to trying any of these treatments, (meds, diet, surgery, etc) that we know how

it will affect the child concerned. Meds and diet are reversible .....

surgery......?

The diet sure has allowed many people to wean their kids' meds, or to at least

reduce the doses. Even though it didnt give Hannah great seizure control, it

did help enormously, as is evidenced by the rapid escalation in seizures since

beginning to wean the diet a week ago. It also allowed us to totally wean one of

the 3 meds she was on when the diet started.

Obviously I am a fan of the diet, and by writing all this I am not trying to

persuade anyone one way or another, rather just wanting to give my personal view

of it. I wish you well as you endeavour to make the best choices for and

her seizures. It is a very rocky road we are all walking, hey?

BTW, surgery is not an option for Hannah, as her PMG is bilateral and wide

spread, and sz's are many and varied. Hope you get lots of info on that option

to help you decide.

Hugs

(Hannah's mum, Australia)

----- Original Message -----

From: ajbdvm

's seizures seem to continue having now been on Phenobarbital,

Trileptal (grouchy drug), and now Topomax. She is currently on all

3, trying to wean off the Trileptal.

Her seizures are short, occurring over about 30 seconds 1-3 times

per day, but she can't breathe during them, and that bothers me.

I am considering the ketogenic diet, but after lurking in the

ketogenic diet's yahoo group, I am getting worried that the diet may

cause as many problems as the medications; maybe more?

Her neurologist had said step 3 (after meds and ketogenic diet)

would be referral for surgery to remove the portion of the brain

responsible for her seizures.

Have any of you had this done? Did it help?

Thanks.

- Bivens, FL

mother to , cortical dysplasia (still waiting for Dr. Dobyns'

report to further diagnose)

[Guest guest]

I hope all goes well for you Sharon. Kirk

surgery

Hello all!

Hope your holiday was the best ! I am doing better, but really scared

because I need surgery on my foot. My doctor and I are going to be

setting the date. I really need it done, but I am scared because trauma

from surgery is what triggered my Still's disease. I am hoping I don't

end up in a bad flare or triggering another autoimmune disorder. What

do you all think......

thanku love xxoo

Sharon

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute for

medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical or

professional medical services. You should consult your physician on specific

medical questions, particularly in matters requiring diagnosis or medical

attention. The International Still's Disease Foundation makes no representations

or warranties with respect to any treatment, action, application, medication or

preparation by any person following the information offered or provided within

this support form.

ion by any person following the information offered or provided within this

support form.

[Guest guest]

Thanku Kirk!

xo sharon

>   I hope all goes well for you Sharon. Kirk

>   surgery

>

>

>   Hello all!

>   Hope your holiday was the best ! I am doing better, but really

> scared

>   because I need surgery on my foot. My doctor and I are going to be

>   setting the date. I really need it done, but I am scared because

> trauma

>   from surgery is what triggered my Still's disease. I am hoping I

> don't

>   end up in a bad flare or triggering another autoimmune disorder.

> What

>   do you all think......

>   thanku love xxoo

>   Sharon

>

>

>

>   Visit the Still's Disease Message Board

>   http://disc.server.com/Indices/148599.html

>

>   The materials and information contained in this message are not

> intended to replace the services of a trained health professional or

> to be a substitute for medical advice of physicians and/or other

> health care professionals. The International Still's Disease

> Foundation is not engaged in rendering medical or professional medical

> services. You should consult your physician on specific medical

> questions, particularly in matters requiring diagnosis or medical

> attention. The International Still's Disease Foundation makes no

> representations or warranties with respect to any treatment, action,

> application, medication or preparation by any person following the

> information offered or provided within this support form. 

>

>   ion by any person following the information offered or provided

> within this support form. 

>

>

>

>

>        

[Guest guest]

Sharon,

Just curious, how do you know that trauma from surgury triggered your Still

s. I just wondered as I started running my fever right after 3 brain

surgeries in 2001 and about 6 months later is when I really noticed the

other symptoms. I have always believed that they were tied together and

that all the trauma that year was just too much but no doctor has ever

validated that. Thanks and good luck with your foot, I had surgery right

before Xmas and am still kickin.

Lynn

-- Re: surgery

Thanku Kirk!

xo sharon

> I hope all goes well for you Sharon. Kirk

> surgery

>

>

> Hello all!

> Hope your holiday was the best ! I am doing better, but really

> scared

> because I need surgery on my foot. My doctor and I are going to be

> setting the date. I really need it done, but I am scared because

> trauma

> from surgery is what triggered my Still's disease. I am hoping I

> don't

> end up in a bad flare or triggering another autoimmune disorder.

> What

> do you all think......

> thanku love xxoo

> Sharon

>

>

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

> The materials and information contained in this message are not

> intended to replace the services of a trained health professional or

> to be a substitute for medical advice of physicians and/or other

> health care professionals. The International Still's Disease

> Foundation is not engaged in rendering medical or professional medical

> services. You should consult your physician on specific medical

> questions, particularly in matters requiring diagnosis or medical

> attention. The International Still's Disease Foundation makes no

> representations or warranties with respect to any treatment, action,

> application, medication or preparation by any person following the

> information offered or provided within this support form.

>

> ion by any person following the information offered or provided

> within this support form.

>

>

>

>

>

[Guest guest]

Dear Lynn,

How are you?

I had hammer toe surgery in the summer of 2002. I had a pin in each

small toe and a screw in my big toe all sticking out of my foot for

months. I kept banging the big toe screw on the fridge ...lol yikes!! I

have had jra since I was 10, but no stills symptoms- I was doin well.

The night I stayed in the hospital right after surgery , they didnt

give me my pain meds till I was already in pain. They didnt work. I sat

up screaming all night. Then, they gave me a walking cast and a walker.

The walker really bothered all the joints in my upper body. Next thing

I knew my throat was sore and my whole body flared. My temp was 103 and

my normal temp is 97.5. I was in and out of emergency room every week.

No one knew what was wrong . I got a new doc and he dx me. I guess the

stress and trauma from jra let on to me getting another autoimmune

disorder. I now have stills, sjogrens syndrome, and possibly

fibromyalgia , but the docs arent sure yet about fibro. I only know

that I am in constant pain. I am glad to hear your surgery went

well...... Please stay well!!

I hope this helps you!

love sharon xxoo

> Sharon,

> Just curious, how do you know that trauma from surgury triggered your

> Still

> s.  I just wondered as I started running my fever right after 3 brain

> surgeries in 2001 and about 6 months later is when I really noticed

> the

> other symptoms.  I have always believed that they were tied together

> and

> that all the trauma that year was just too much but no doctor has ever

> validated that.  Thanks and good luck with your foot, I had surgery

> right

> before Xmas and am still kickin.

> Lynn

>

> -- Re: surgery

>

> Thanku Kirk!

> xo sharon

>

>

> >   I hope all goes well for you Sharon. Kirk

> >    surgery

> >

> >

> >    Hello all!

> >    Hope your holiday was the best ! I am doing better, but really

> > scared

> >    because I need surgery on my foot. My doctor and I are going to

> be

> >    setting the date. I really need it done, but I am scared because

> > trauma

> >    from surgery is what triggered my Still's disease. I am hoping I

> > don't

> >    end up in a bad flare or triggering another autoimmune disorder.

> > What

> >    do you all think......

> >    thanku love xxoo

> >    Sharon

> >

> >

> >

> >    Visit the Still's Disease Message Board

> >    http://disc.server.com/Indices/148599.html

> >

> >    The materials and information contained in this message are not

> > intended to replace the services of a trained health professional or

> > to be a substitute for medical advice of physicians and/or other

> > health care professionals. The International Still's Disease

> > Foundation is not engaged in rendering medical or professional

> medical

> > services. You should consult your physician on specific medical

> > questions, particularly in matters requiring diagnosis or medical

> > attention. The International Still's Disease Foundation makes no

> > representations or warranties with respect to any treatment, action,

> > application, medication or preparation by any person following the

> > information offered or provided within this support form.

> >

> >    ion by any person following the information offered or provided

> > within this support form.

> >

> >

> >

> >

> >         

[Guest guest]

Thanks Carey,

I do think it will make a big difference having you all to help me thru!

Bless you Carey! and thanku for being there... you are a good freind!

love sharon xxoo

>

>

>

> HI  Sharon....Good Luck with your upcoming surgery. I always thought

> that

> Stress had  a lot to do with my onset of Stills. So it might just be

> that you got

> really  stressed over your last surgery and that caused your onset.

> Just try

> to relax  and don't worry about it. Everything will be OK. I know,

> last

> October when I had  my eye surgery. I was so scared and a lot of the

> supporting

> letters from my  Stills friends helped me to calm down. And

> everything turned out

> just fine. You  will be fine sweetie!!

> Love,

> Carey

>

>

>

>

[Guest guest]

hI mAREE, which dr is doing your surgery?

Libbykins

I have been in touch with the Dr. and they will give me a gastro?? whatever they cll it (camera down the throat) while I'm unconscious to see why I'm having this awful reflux. I told them I want one surgery

and everything fixed, whatever it takes. If it means a hernia op, do it, if it means new band, just do it, but I don't want to have to go back for more operations. I love the way I TELL them, what an audacity. Anyway, it's happening so that is all I can ask for. I want to loose more weight and be well again. I started on this journey perfectly, everything was great the first 15 months, so there must be a problem why I'm going through this now...Let's fix it!! Maree

[Guest guest]

Maree

You are not being audacious, more pro-active I would say. You are aware that there may be a problem and you want it fixed whilst you are under - fair call I say.

Nx

[Guest guest]

Same as who did the initial banding, Dr. nt LAYANI from the

Gold Coast and Dr. Braniff assisting. M.

> >

> > I have been in touch with the Dr. and they will give me a

gastro??

> > whatever they cll it (camera down the throat) while I'm

unconscious to

> > see why I'm having this awful reflux. I told them I want one

surgery

> > and everything fixed, whatever it takes. If it means a hernia

op, do

> > it, if it means new band, just do it, but I don't want to have

to go

> > back for more operations. I love the way I TELL them, what an

> > audacity. Anyway, it's happening so that is all I can ask for. I

want

> > to loose more weight and be well again. I started on this journey

> > perfectly, everything was great the first 15 months, so there

must be

> > a problem why I'm going through this now...Let's fix it!! Maree

> >

> >

> >

>

[Guest guest]

Always said you were tough.Take care of yourself.

Gail

surgery

Everything was just what the doc expected, no more, so that’s good. I was amazingly alert & not at all sleepy when I got home. Went to bed after my regular sleep meds kicked in. They did a nerve block, so I’m only just now starting to feel a little pain, but set the alarm to take pain pills every 4 hrs. So far, so good, gang!