new to list

[Guest guest]

what an awesome idea. i haven't had my knee surgeries yet (10/31) but

will do that since i have about 8 steps to my condo. does a person

gets less skittish at using stairs as you get farther away from your

surgery date?

gayle

////

> Hey , go down backwards, holding on to railing. Makes a BIG

difference. Marge///

[Guest guest]

I'm only on it 3 days switching from Paxil...same issues.

New to List

Greetings all, and Happy Thursday.

I was just put on Lexapro last week, after a 4 month run with Celexa.

It appears that my problem is more acute anxiety (very specific

trigger) than depression. So far, I seem to be responding well to the

drug change. If anyone feels like it, I would appreciate any thoughts

on Lexapro and anxiety.

Thanks in advance,

K a t

[Guest guest]

>I also just started Lexapro for anxiety and panic attacks. I am

ending my third week. The doctor started me with 5mg and has

increased me to 10. He was afraid it would increase my anxiety in the

beginning and he was right. For the first 2 weeks the number of panic

attacks subsided but the intensity strengthened. I am very pleased

this week, I have only had a couple that were very mild. Hope this

helped.

Lynda

> Greetings all, and Happy Thursday.

>

> I was just put on Lexapro last week, after a 4 month run with

Celexa.

> It appears that my problem is more acute anxiety (very specific

> trigger) than depression. So far, I seem to be responding well to

the

> drug change. If anyone feels like it, I would appreciate any

thoughts

> on Lexapro and anxiety.

>

> Thanks in advance,

>

> K a t

>

[Guest guest]

Hi Janice,

I stopped vaxing my 2 children about 5 years ago. They were 11 and 9 at the

time. Up until then they had been fully vaccinated since I had no idea how

dangerous the shots were. Now we have a religious exemption in place for

school. We've never had anyone question it at all. We live in KY.

Our dog is what raised my " red flag " too. Nearly 6 years ago we got him as

a pup and he had a reaction to one of his shots. I started researching

animal vaccines and came across information about the dangers of ALL

vaccines. I am a former RN, so it was a huge step for me to get out of my

box of conventional medicine. We don't vaccinate anymore, only use

homeopathy and are sooo much healthier for it.

Your son is very fortunate that you are learning about this while he is

still so young. I would give anything to be able to turn back the clock and

do things differently for my children. They were so sick when they were

younger. I am convinced that vaccines, frequent antibiotics, etc. were the

culprits.

Anyway, welcome to the group and ask away with whatever questions you have.

This is a wonderful list for support and information.

Kay

new to list

The funny thing is what raised a red flag for me was that my dog had a

reaction to a shot. I got to searching the internet looking for

information dog reactions and came across so many different sites

with information on how shots are bad for humans.

I would imagine it would be hard to claim exemption due

to religious beliefs after he has already received most shots.

Janice

[Guest guest]

Hi Janice,

I highly recommend you check out Sheri Nakken's website.

http://www.nccn.net/~wwithin/vaccine.htm There is a wealth of information

there to keep you busy for some time. : ) In addition, the archives for

the list are another good way to find some answers to your questions.

If you have any other specific questions, don't hesitate to ask.

As someone mentioned, you should look into filing a report with VAERS

yourself since most likely your MD won't. I had to do that with a reaction

my dd had when she was a toddler. It didn't matter that I filed it about 10

years after the fact, they still record all incidents.

http://vaers.hhs.gov/

Kay

new to list

Thanks for the advice and if you have anymore I'll gladly take

it!! Going to keep reading up on the earlier posts and try to

educate myself some more!

Janice

[Guest guest]

Welcome to the list Dina.

I'm Mike from Ohio, AB who is also friends with Lori, got to meet them

several years ago. If she says your OK, then you must be

I'm sure you'll find all kinds of resources to your questions here,

quite a few knowledgeable people around.

--

Later,

Mike Briggs

Photo Gallery: http://www.pbase.com/photogrif/

" Fish Gotta Swim, I Gotta Dive "

[Guest guest]

>

> Hello everyone,

> I am new to the SMA list. My name is Dina, I am 38

> years old, and I live in Texas. I have been friends

> with Lori ( " those2 " ) for nearly 20 years, and she is

> the one who told me about this group. I do not have

> SMA, but I do have a form of Muscular Dystrophy.

>

> I am having some health problems that I'd like to

> discuss with ya'll, which I'll do in a separate post.

> I work about 25 hours a week as a reference librarian,

> providing disability and health information for people

> across the state. I am ambulatory most of the time and

> independent in most tasks, but I do have a personal

> care attendant for a few hours per week. I don't drive

> and rely on para-transit to get around the city.

>

> Hope everyone is having a good day,

> Dina

>

>

> __________________________________________________

>

[Guest guest]

Hi Olly! You have such an unusual name, LOL. I'm jared. I don't have sma

but i'm friends with a number of people on here that have it. I am 23 years

old and you are welcome to IM me anytime, my MSN is

KatyaFan@.... I'm quite the computer geek and love talking

about technology, LOL.

On 8/27/06, Olly <ollypool@...> wrote:

>

>

> >

> > Hello everyone,

> > I am new to the SMA list. My name is Dina, I am 38

> > years old, and I live in Texas. I have been friends

> > with Lori ( " those2 " ) for nearly 20 years, and she is

> > the one who told me about this group. I do not have

> > SMA, but I do have a form of Muscular Dystrophy.

> >

> > I am having some health problems that I'd like to

> > discuss with ya'll, which I'll do in a separate post.

> > I work about 25 hours a week as a reference librarian,

> > providing disability and health information for people

> > across the state. I am ambulatory most of the time and

> > independent in most tasks, but I do have a personal

> > care attendant for a few hours per week. I don't drive

> > and rely on para-transit to get around the city.

> >

> > Hope everyone is having a good day,

> > Dina

> >

> >

> > __________________________________________________

> >

[Guest guest]

Hello Dina ~ welcome aboard!! -a

Dina Abramson <dinaa68@...> wrote:

Hello everyone,

I am new to the SMA list. My name is Dina, I am 38

years old, and I live in Texas. I have been friends

with Lori ( " those2 " ) for nearly 20 years, and she is

the one who told me about this group. I do not have

SMA, but I do have a form of Muscular Dystrophy.

I am having some health problems that I'd like to

discuss with ya'll, which I'll do in a separate post.

I work about 25 hours a week as a reference librarian,

providing disability and health information for people

across the state. I am ambulatory most of the time and

independent in most tasks, but I do have a personal

care attendant for a few hours per week. I don't drive

and rely on para-transit to get around the city.

Hope everyone is having a good day,

Dina

__________________________________________________

[Guest guest]

Hello and Welcome!

L

Dina Abramson wrote:

> Hello everyone,

> I am new to the SMA list. My name is Dina, I am 38

> years old, and I live in Texas. I have been friends

> with Lori ( " those2 " ) for nearly 20 years, and she is

> the one who told me about this group. I do not have

> SMA, but I do have a form of Muscular Dystrophy.

>

> I am having some health problems that I'd like to

> discuss with ya'll, which I'll do in a separate post.

> I work about 25 hours a week as a reference librarian,

> providing disability and health information for people

> across the state. I am ambulatory most of the time and

> independent in most tasks, but I do have a personal

> care attendant for a few hours per week. I don't drive

> and rely on para-transit to get around the city.

>

> Hope everyone is having a good day,

> Dina

>

>

> __________________________________________________

>

[Guest guest]

Hi ,

Don't dispair and don't give up your exercise. I had to learn to

walk again after my surgery, but the second learning was far faster

than the first (my mom keeps telling me how long it took the first

time). I lost one side of semi-circular canals during my surgery,

and the loss of balance was huge. I literally fell out of bed the

day after. I remember walking down the hallway at the hospital,

clutching the railing (I had always wondered why the hallways had

railings).

Within a couple of months, I was running, playing tennis;

basically doing everything I did before with a minor loss of talent,

but zero loss in fun. For running, the C-toma is a non-issue.

I have a prosthetic hearing bone that hasn't moved since

implantation. My hearing is poor in that ear, but I haven't moved to

a hearing aid as the other ear compensates during the day, and the

extra silence at night is a rare benefit.

Is there nothing to be done for the first ear? Can they not

replace the ear drum? Is the rest of that ear working well?

>

> Hi All,

> I've been lurking here for a few weeks, and I must thank you all

for the info and support that I've already seen so readily shared.

>

> I'll have the tympanoplasty Mastoidectomy for cholesteatoma Dec

11. Had the same surgery 5 years ago in the left ear to correct a

20+ year ruptured eardrum. It did not work, still a hole, bigger

and more problematic than ever, plus tinnitus and substantial

hearing lose. Now my right ear, long time retracted, has been

diagnosed with the C. Guess my eustacheon tubes don't work right.

Recovery from the first surgery parallels what I've been reading

here, balance and coordination a big problem. Seemed like years to

find my footing on the tennis court again. I also run quite a bit,

so I'm curious to read what other experiences with this kind of

exercise has been. Dr. says 3 weeks til I can run again, but I

wonder if I undermined the healing of the left eardrum when I began

running (after the prescribed layoff) again then. I can't quit

running, and I dread having to repeat the long climb back to the

tennis court.

>

> I'll be getting at least one hearing aid soon, long overdue, for

the left ear and will probably need same for the right after the

surgery. How do you cope with hearing aids and strenuous, sweaty

exercise?

>

> So I guess the overall concern is to all you out there who are

addicted to some sort of physical exercise -- how do you recover

and adapt to the interference of the C and all its ramifications.

>

> MPlatt

>

[Guest guest]

For sure, I can't give up exercise any more than I can give up eating!

But I've been very aware for a long time how much pressure there is

in my ears (they would always pop and crackle and block up, I always

assumed that was normal) when I ran, and it seemed that the grafted

eardrum (left ear) went " poof " while I was running after the surgery

and again after several other in-office procedures intended to patch

it. The doctor never seemed interested in my observations about this

and said it was ok to run. Facing another surgery and recovery period

along these lines for the c-toma in the right ear, just wondered if

anyone else had similar experiences with intense exercise.

At this point, the current doctor (or any of the others after the

surgery) does not seem to think there is any more to be done about the

left ear except get a hearing aid. His attention now is on the c-toma.

And I definately felt a decline in skill level on the tennis court --

timing, coordination; ultimately it took several years just to build

confidence back up.

M

-- In cholesteatoma , " gallalake " <michael.cupit@...>

wrote:

>

> Hi ,

>

> Don't dispair and don't give up your exercise. I had to learn to

> walk again after my surgery, but the second learning was far faster

> than the first (my mom keeps telling me how long it took the first

> time). I lost one side of semi-circular canals during my surgery,

> and the loss of balance was huge. I literally fell out of bed the

> day after. I remember walking down the hallway at the hospital,

> clutching the railing (I had always wondered why the hallways had

> railings).

> Within a couple of months, I was running, playing tennis;

> basically doing everything I did before with a minor loss of talent,

> but zero loss in fun. For running, the C-toma is a non-issue.

> I have a prosthetic hearing bone that hasn't moved since

> implantation. My hearing is poor in that ear, but I haven't moved to

> a hearing aid as the other ear compensates during the day, and the

> extra silence at night is a rare benefit.

>

> Is there nothing to be done for the first ear? Can they not

> replace the ear drum? Is the rest of that ear working well?

>

>

>

>

>

> >

> > Hi All,

> > I've been lurking here for a few weeks, and I must thank you all

> for the info and support that I've already seen so readily shared.

> >

> > I'll have the tympanoplasty Mastoidectomy for cholesteatoma Dec

> 11. Had the same surgery 5 years ago in the left ear to correct a

> 20+ year ruptured eardrum. It did not work, still a hole, bigger

> and more problematic than ever, plus tinnitus and substantial

> hearing lose. Now my right ear, long time retracted, has been

> diagnosed with the C. Guess my eustacheon tubes don't work right.

> Recovery from the first surgery parallels what I've been reading

> here, balance and coordination a big problem. Seemed like years to

> find my footing on the tennis court again. I also run quite a bit,

> so I'm curious to read what other experiences with this kind of

> exercise has been. Dr. says 3 weeks til I can run again, but I

> wonder if I undermined the healing of the left eardrum when I began

> running (after the prescribed layoff) again then. I can't quit

> running, and I dread having to repeat the long climb back to the

> tennis court.

> >

> > I'll be getting at least one hearing aid soon, long overdue, for

> the left ear and will probably need same for the right after the

> surgery. How do you cope with hearing aids and strenuous, sweaty

> exercise?

> >

> > So I guess the overall concern is to all you out there who are

> addicted to some sort of physical exercise -- how do you recover

> and adapt to the interference of the C and all its ramifications.

> >

> > MPlatt

> >

>

[Guest guest]

Hi , welcome!

I have 3 sons (single mom) and my OCDer is 17 (18 this January). OCD

began for him back at the start of 6th grade. It also seemed sudden,

and I guess it was, all at once we had 24/7 compulsions, etc. But

he'd had some OC behaviors before that, just nothing that was out of

control, disrupting. The rest of us (me, 2 other sons) have our OC

tendencies (as I call them) but nothing that is a problem. I just

tell he got the full effect of it!

He's not on any meds right now, just trying the inositol powder again

(took it in middle school). He was on Celexa 9th and 10th grades

then wanted to come off it, felt he could handle things. Well of

course OCD popped back up this past January, bad, but things are

better now. He still is dealing with it each day, we've had some

worse weeks then it seems to calm down again I guess. He still

doesn't want to go back on medication though. No therapist either

all these yeas (small rural area, no one experienced). We've

managed, slowly, on our own and with all the research and tips from

this great group!! This group has always been my BEST support all

these years, a good place to turn to and share and vent when needed!

single mom, 3 sons

, 17, with OCD, dysgraphia and Aspergers

, 17, (twin - not identical)

Randall, 21

>

> I just started with this list a few days ago. I have come to

realize

> that we are very fortunate with our situation. We have a 17,

almost

> 18 year old daughter who was diagnosed with OCD a little over 3

> years ago. It came on quite suddenly, although it was a few weeks

> before the diagnosis was confirmed in a psychiatris hospital. The

[Guest guest]

Welcome Arch,

Congratulations on your upcoming banding. I suggest that you check out our

calendar at groups. You need to have a ID in order to access our

group calendar and website.

/cal . It has listings of

all the various support groups in the area. If you want to attend one, I

suggest that you post to this list to see if anyone else is planning on

being there. We've had a few instances of new people attending only to be

the only one there, so do check first!

Barb,

moderator

[Guest guest]

Congratulations on your choice of Going to Mexico. Who is your doctor

down there, Hopefully Dr. Kuri as he is the best. Support groups that

I know about are Lake s the 2nd Sunday of the month at Hagen's

Market Street Cafe at 7pm and in Monroe on Monday nights (except the

2nd Monday of the month) at Safeway Starbucks at 7pm. I hope to start

going to the Monroe meeting this coming Monday. I don't know much about

either group as to whether they are more stateside bansters or Mexican.

Hope this helps.

[Guest guest]

Hi, we're new to the list and unfortunately I've only had a chance to read a

little of what others have been going through with your own scoliosis

issues. Because of that, I won't expect a lot of feedback on our problems but

I

believe it will at least help us if I write it down.

My 20 year old son is scheduled to have the spinal fusion surgery on August

27th. His will be from T4 to the sacrum. His tail bone is also protruding,

causing him much pain but they may or may not deal with that at the same time.

His main problems however do not lie with his scoliosis. He has severe

respiratory difficulties on an ongoing basis, he has a trach and is on a

ventilator at night. He is mentally deficient and non verbal. G-tube fed,

visually

impaired and is spastic. He's on a number of medications, including baclofen,

muscle relaxant, etc.

He has 90 degree curvature.

I have nursing care for my son but recently one of the caregivers told me

that if he dies that I shouldn't cry because I made the decision for the

surgery.

The surgeon believes the surgery is indicated. I feel we are in a real

catch 22. During the recovery process, I am so afraid that he will run into

severe respiratory problems trying to clear his lungs of secretions and develop

pneumonia, which he is very prone to do on a normal basis.

Thank you for letting us air our issues.

Best wishes to all of you who are going through your own issues in dealing

with scoliosis.

Michele and my son

**************Vote for your city's best dining and nightlife. City's Best

2008. (http://citysbest.aol.com?ncid=aolacg00050000000102)

[Guest guest]

Hi, we're new to the list and unfortunately I've only had a chance to read a

little of what others have been going through with your own scoliosis

issues. Because of that, I won't expect a lot of feedback on our problems but

I

believe it will at least help us if I write it down.

My 20 year old son is scheduled to have the spinal fusion surgery on August

27th. His will be from T4 to the sacrum. His tail bone is also protruding,

causing him much pain but they may or may not deal with that at the same time.

His main problems however do not lie with his scoliosis. He has severe

respiratory difficulties on an ongoing basis, he has a trach and is on a

ventilator at night. He is mentally deficient and non verbal. G-tube fed,

visually

impaired and is spastic. He's on a number of medications, including baclofen,

muscle relaxant, etc.

He has 90 degree curvature.

I have nursing care for my son but recently one of the caregivers told me

that if he dies that I shouldn't cry because I made the decision for the

surgery.

The surgeon believes the surgery is indicated. I feel we are in a real

catch 22. During the recovery process, I am so afraid that he will run into

severe respiratory problems trying to clear his lungs of secretions and develop

pneumonia, which he is very prone to do on a normal basis.

Thank you for letting us air our issues.

Best wishes to all of you who are going through your own issues in dealing

with scoliosis.

Michele and my son

**************Vote for your city's best dining and nightlife. City's Best

2008. (http://citysbest.aol.com?ncid=aolacg00050000000102)

[Guest guest]

and ,

You are in my prayers and you struggle with this enormous decision and set of

circumstances as severe as I have ever heard. I am fused from T-4 to Sacrum, but

have none of the other issues you describe. My curvature was 94 degrees, now

corrected to 59 degrees. Not much correction, but at least gave me a chance at

having a future without lung complications. You are a very brave mother to make

this decision. Recovery is tough in the beginning and he will require a lot of

care. I hope you have someone strong helping taking care of you. There are lots

of folks on this list who will help keep your spirts up, so let us know how it's

going, and know that we will be praying for a good outcome.

Patti

RE: New to List

Hi, we're new to the list and unfortunately I've only had a chance to read a

little of what others have been going through with your own scoliosis

issues. Because of that, I won't expect a lot of feedback on our problems but

I

believe it will at least help us if I write it down.

My 20 year old son is scheduled to have the spinal fusion surgery on August

27th. His will be from T4 to the sacrum. His tail bone is also protruding,

causing him much pain but they may or may not deal with that at the same time.

His main problems however do not lie with his scoliosis. He has severe

respiratory difficulties on an ongoing basis, he has a trach and is on a

ventilator at night. He is mentally deficient and non verbal. G-tube fed,

visually

impaired and is spastic. He's on a number of medications, including baclofen,

muscle relaxant, etc.

He has 90 degree curvature.

I have nursing care for my son but recently one of the caregivers told me

that if he dies that I shouldn't cry because I made the decision for the

surgery.

The surgeon believes the surgery is indicated. I feel we are in a real

catch 22. During the recovery process, I am so afraid that he will run into

severe respiratory problems trying to clear his lungs of secretions and

develop

pneumonia, which he is very prone to do on a normal basis.

Thank you for letting us air our issues.

Best wishes to all of you who are going through your own issues in dealing

with scoliosis.

Michele and my son

**************Vote for your city's best dining and nightlife. City's Best

2008. (http://citysbest.aol.com?ncid=aolacg00050000000102)

[Guest guest]

Dear Michele,

First, let me say the caregiver is insensitive and is not 's mother. A

mother will and has the right to cry whenever any of her children is facing

an emotional or physical challenge certainly including decisions or lack of

decisions made by parents.

My niece is mentally and physcially challenged and has had 2 successful

surgeries for scoliosis. She did not have a trach or vent like , but had

esophageia reflex and asthma. The reflex problems caused pneumonia from 6

months old until after her 2 scoliosis surgery. She needed to sleep in a

sitting

upright position until she was 6 years old. Her surgeries were at 6 years

and 13 years old. She sailed through scolio surgery w/o pneumonia or

respitory problems.

Unlike a poster that said you had to be flat for 6 months...that is not

true. Most patients become ambulatory or upright within days of surgery.

Be sure your surgeon is experienced in this surgery and if he is

recommending it ask if you can seek a 2nd opinion. It should reassure you it

is the

right decision. Good luck to both of you.

Jolene

**************Vote for your city's best dining and nightlife. City's Best

2008. (http://citysbest.aol.com?ncid=aolacg00050000000102)

[Guest guest]

Oh, Sweetheart!! & nbsp; I'm so glad you wrote! & nbsp; I can understand your catch

22 perfectly. & nbsp; I have severe lung disease (Asthma and COPD) and had scoli

surgery in 7/02 for & nbsp; & nbsp;66/76 curves, T2 to L5. & nbsp; There was a lot of

concern regarding intubation, respiratory problems, etc. with me, too. & nbsp;

But, my thoracic curve was bearing on my lungs and other organs, so it had to be

done, or, my breathing problems would have been much worse in just a few years,

to say nothing of that I'd be in a wheelchair within 3 years if I didn't have

the surgery, due to the pain and stooped-over-and-sideways posture (like

Quasimodo). & nbsp;

& nbsp;

So, first of all, during surgery, he will get all the respiratory care he will

need and more. & nbsp; The doctors and nurses are just as concerned about his

ability to breath and be free if resp. infection as you are. & nbsp; As for recoup

care, I don't know what to tell you or advise you, as I was able to sit up and

walk with a walker. & nbsp; But, I can tell you to do exactly what the doctor

tells you to do and he should be ok. & nbsp;

& nbsp;

As for that nurse who said such a terrible thing, don't let her step foot in

your home again. & nbsp;She's poison! & nbsp; Who needs that!? & nbsp; Plus, you can

be SURE his new nurse will give your son more loving care than before, and, more

supportive to your son and to you and your entire family. & nbsp; Try to put what

that witch said out of your mind. & nbsp; She's hardly human to say such an awful

thing!

& nbsp;

I'll pray for you, and will be thinking of you. & nbsp; Chin up! & nbsp; You'll all

be ok.

& nbsp;

Lots of love to you and your son,

Lana Banana

& nbsp;

From: EMLJOE@... & lt;EMLJOE@... & gt;

Subject: RE: New to List

Scoliosis Treatment ,

Scoliosis Treatment-subscribe ,

Scoliosis Treatment-unsubscribe ,

Scoliosis Treatment-owner

Date: Tuesday, June 10, 2008, 11:33 PM

Hi, we're new to the list and unfortunately I've only had a chance to read a

little of what others have been going through with your own scoliosis

issues. Because of that, I won't expect a lot of feedback on our problems but I

believe it will at least help us if I write it down.

My 20 year old son is scheduled to have the spinal fusion surgery on August

27th. His will be from T4 to the sacrum. His tail bone is also protruding,

causing him much pain but they may or may not deal with that at the same time.

His main problems however do not lie with his scoliosis. He has severe

respiratory difficulties on an ongoing basis, he has a trach and is on a

ventilator at night. He is mentally deficient and non verbal. G-tube fed,

visually

impaired and is spastic. He's on a number of medications, including baclofen,

muscle relaxant, etc.

He has 90 degree curvature.

I have nursing care for my son but recently one of the caregivers told me

that if he dies that I shouldn't cry because I made the decision for the

surgery.

The surgeon believes the surgery is indicated. I feel we are in a real

catch 22. During the recovery process, I am so afraid that he will run into

severe respiratory problems trying to clear his lungs of secretions and develop

pneumonia, which he is very prone to do on a normal basis.

Thank you for letting us air our issues.

Best wishes to all of you who are going through your own issues in dealing

with scoliosis.

Michele and my son

************ **Vote for your city's best dining and nightlife. City's Best

2008. (http://citysbest. aol.com?ncid= aolacg0005000000 0102)

[Guest guest]

>

> Hi folks,

>

> My name is Tom and I am new to your list. I'd like to ask for your

> input into what treatment strategies you have found helpful. Perhaps,

> I need to read through past messages?

>

Hi Tom,

I am going to welcome you to this list even though that irks some

people. You will find alot of support here even though it is not a

support group.

Currently, the moderator is running the group as an experimental

RESEARCH list but we tend to go off the rails then he reigns us back

in. In the past, this list was more of an experimental TREATMENTS

list. I am being specific here because you will find tons of

information on experimental treatments in the archives. Please learn

to use the search function and you will discover a treasure trove of

information.

Also, I would like to point out the files section of this board where

some folks have uploaded what they have found to be very useful

information. Some members of this list have their own forums or

webpages which are rich in information. You can find the files section

when you first enter the forum. (Links to your left). The polls are

interesting as well.

I have also had issues with pancreatitis but have luckily never been

hospitalized. Welcome to the group. I hope you find some answers

here.

Marti

[Guest guest]

Tom,

I have a couple of ideas and that is all they are.

One is that your underlying disease is whatever caused the

pancreatitis. Do you have any idea what that might have been?

Remember that fibromyalgia is just a name for a disease with no known

cause. I would avoid the label like the plague and pursue other

causes of your initial illness. Whatever you got in the first place

has caused severe nerve damage in your case.

I suggest you talk with a neurologist about taking a new drug called

Lyrica or pregabalin. It has just been approved - the only drug

approved - to treat fibromyalgia. This does not mean you have fibro,

just that you might be able to get a prescription.

My hunch is that Lyrica will relieve your nerve pain. I think it will

help you with sleep, depression and anxiety. It cures nothing, just

relieves symptoms. You want to take as low a dose as possible.

Hopefully you can stop the other two drugs and just use Lyrica.

Meanwhile keep researching as to what else is going on.

a Carnes

>

> Hi folks,

>

> My name is Tom and I am new to your list. I'd like to ask for your

> input into what treatment strategies you have found helpful.

Perhaps,

> I need to read through past messages?

>

> Four years ago, I was critically ill with pancreatitis which near

> killed me on multiple occasions - I was in a coma for 2 months, had

> 20+ surgeries to stop my abdominal infection and was in the hospital

> for about 1/2 year. I was given a 5% chance to live, but obviously

> beat the odds. I am fortunate. I am now 41 and working hard to

return

> to a “normal†life.

>

> Due to sepsis, multiple organ failure, ventilator problems, and

being

> given long-term paralyzing agents (Vecuronium), I was diagnosed with

> " critical illness polymyoneuropathy " . In the hospital(s), I had to

> relearn to walk and had/have painful nerve damage in my arms and

legs.

> For three years, my pain slowly decreased, my mobility and strength

> increased, and I was able to return to meaningful work.

>

> About a year ago, pain, weakness, and fatigue returned with a

> vengeance, and after being bounced around to different doctors, five

> months ago, a rheumatologist reluctantly gave me the diagnosis of

> fibromyalgia. He said that the trauma to my body has set the stage

for

> this pain/fatigue " syndrome, " but he was fairly vague with prognosis

> or treatment. I was given Tramadol 50 m.g. as needed for pain (I

> usually take 2/day). I also take clonazepam .5 m.g. prn for spikes

of

> anxiety. The rheumatologist said that the best defense against the

> syndrome is " healthy living " - good diet, steady exercise, enough

> sleep, etc.

>

> So - and thanks for reading this far - I am wondering what self-help

> treatments you would recommend. I have started to plow through the

> books and medical articles on fibromyalgia. I have started a 200 -

300

> m.g. daily protocol of 5-HTP. I am trying to avoid salicylates

(harder

> to do than I initially thought), take a multi-vitamin, and exercise

> regularly.

>

> I have read about the guafenesin protocol, but am dubious. I have

read

> that one can be prescribed muscle relaxants (I get terrible legs

> cramps), tricyclics, and SSRI’s. My rheumatologist did not

suggest any

> of these, partially, I think because I am a chronic under-reporter

of

> my symptoms!

>

> Well, any thoughts/advice/warnings/hope that you might have would be

> great. I wish you all well in your search and work for better

health.

>

> Tom

>

[Guest guest]

Hi Michele. I just read your original note to the group and wanted to add my

support to you and your precious son, , at this difficult time of decision

making. It was clear from your note how much you love your son and want the very

best for him. I am so sorry that you had to deal with the nurse who made such a

stupid comment. How she got in health care is hard to figure. She is in the

wrong profession to have told you that you should not cry. That's about the

meanest thing I have heard a 'care giver' say in a long time! She should not be

in the position of caring for someone who is depending on her for physical,

emotional and spiritual support. I hope she can be replaced and you have others

who can be there for you and .

Please know that there are a lot of us here who will keep you and in our

prayers and will be anxious to hear how you both are doing all along the way. I

know it must be so difficult to be put in the position of making decisions that

will affect and his life quality. You have to know that the doctor you have

chosen has 's best quality of life as his or her main goal. I totally agree

with the others in saying that a second opinion is always the best thing when

surgery is concerned. Then you have to trust the doctors and your heart and know

you have done what is best for . You can't spend your life second guessing

your decision after that. Please keep us informed- we are interested in hearing

all the details and I feel sure that there are people here who can answer all

your questions and calm your concerns. I will pray for you both and trust that

God will keep close and that whatever is for his greatest good will occur.

Blessings,

Bea

From: EMLJOE@... <EMLJOE@...>

Subject: RE: New to List

Scoliosis Treatment ,

Scoliosis Treatment-subscribe ,

Scoliosis Treatment-unsubscribe ,

Scoliosis Treatment-owner

Date: Tuesday, June 10, 2008, 11:33 PM

Hi, we're new to the list and unfortunately I've only had a chance

to read a

little of what others have been going through with your own scoliosis

issues. Because of that, I won't expect a lot of feedback on our problems but

I

believe it will at least help us if I write it down.

My 20 year old son is scheduled to have the spinal fusion surgery on August

27th. His will be from T4 to the sacrum. His tail bone is also protruding,

causing him much pain but they may or may not deal with that at the same time.

His main problems however do not lie with his scoliosis. He has severe

respiratory difficulties on an ongoing basis, he has a trach and is on a

ventilator at night. He is mentally deficient and non verbal. G-tube fed,

visually

impaired and is spastic. He's on a number of medications, including baclofen,

muscle relaxant, etc.

He has 90 degree curvature.

I have nursing care for my son but recently one of the caregivers told me

that if he dies that I shouldn't cry because I made the decision for the

surgery.

The surgeon believes the surgery is indicated. I feel we are in a real

catch 22. During the recovery process, I am so afraid that he will run into

severe respiratory problems trying to clear his lungs of secretions and develop

pneumonia, which he is very prone to do on a normal basis.

Thank you for letting us air our issues.

Best wishes to all of you who are going through your own issues in dealing

with scoliosis.

Michele and my son

************ **Vote for your city's best dining and nightlife. City's Best

2008. (http://citysbest. aol.com?ncid= aolacg0005000000 0102)

[Guest guest]

Tom, you are to be commended for having the courage to change. Keep

us posted on how you do. I hope you can find something safe to tone

down the nerve pain.

I think I wrote that I am taking 75 mg of Lyrica at bedtime when I

need it. The past week I have been able to sleep without it. I was

taking 150 mg twice a day but developed rapidly growing cataracts in

both eyes while I was on this dose for only 3 months.

I am extremely cautious about any drugs, but will take them if needed.

I have just started taking AlliMax to try and get my Lyme and

probable chronic babesia under control. My son did very well on

GarliCell and circulation P. He still takes the GarliCell which is

sold at Vitacost. The AlliMax I just started is supposed to be a lot

stronger and more effective.

Keep reading and trying to figure out what will work for you.

a Carnes

>

> Hi a,

>  

> My pancreatitis was directly caused by alcohol abuse. No ifs, ands,

or buts (although I looked for some). Fortunately, I have been sober

for four years and will be so permanently.

>  

> I see that the FDA just approved Cymbalta for fibromyalgia. I tried

both Cymblata and Lyrica after I was released from the hospital -

about 3 1/2 years ago - and they didn't help my " critical illness

polymyoneuropathy " which was my primary diagnosis at the

time. Doctors said that I could revisit these medications and I will

contact my rheumatologist to discuss this.

>  

> And, yes, I am going to keep researching all the overlapping

symptoms, syndromes, and disorders that are known at present.

>  

> Thank you for your suggestions - I appreciate it.

>  

>  

> Tom

[Guest guest]

Hi Michele,

Having a disabled son is hard enough, especially one that is mentally

deficient and non-verbal. Do you have a personal support network/team for

him? My brother has Cerebral Palsy and his Network was very good at staying

with him 24/7 after he had his hip replacement and establishing a hospital

journal of how he was doing, when he received his medications, visitors,

etc. They were there to communicate with the medical team since they knew my

brother and the hospital didn't, to be sure that his physical needs were

expressed and met. It took a lot of pressure off of the family so that we

could be there for the emotional support that he also needed.

Even though your son is non verbal, I am sure he communicates his needs

through other methods, and if you have a group of people who know your son,

they might be willing to help you out in the hospital with the medical

staff.

As for his respiratory problems, be sure that this is covered with the

surgeon and the hospital. They might have to bring in additional medical

support for your son. You might even want to make up a sign stating

respiratory difficulty, mental deficient, visually impaired & non verbal,

plus other important facts for above his bed. This might help the nurses,

both on a regular check-up and any emergency. You might find that the 90

degree curve is affecting his lungs, and with surgery, the respiratory

difficulties may not be as severe as they are now.

You might want to check with your local disability organization for other

suggestions that they might have or other parents of disabled children.

These are just some suggestions that helped our family and I hope that they

might help yours. If you don't mind me asking, where do you live and what

hospital will your son have his surgery? I live in Canada, but there might

be others in your area to offer further suggestions/help. Good luck and

please keep us posted.

Llweyn

_____

From: Scoliosis Treatment

[mailto:Scoliosis Treatment ] On Behalf Of EMLJOE@...

Sent: June 10, 2008 8:33 PM

Scoliosis Treatment ;

Subscribe:Scoliosis Treatment-subscribe ;

Unsubscribe:Scoliosis Treatment-unsubscribe ;

Scoliosis Treatment-owner

Subject: RE: New to List

Hi, we're new to the list and unfortunately I've only had a chance to read a

little of what others have been going through with your own scoliosis

issues. Because of that, I won't expect a lot of feedback on our problems

but I

believe it will at least help us if I write it down.

My 20 year old son is scheduled to have the spinal fusion surgery on August

27th. His will be from T4 to the sacrum. His tail bone is also protruding,

causing him much pain but they may or may not deal with that at the same

time.

His main problems however do not lie with his scoliosis. He has severe

respiratory difficulties on an ongoing basis, he has a trach and is on a

ventilator at night. He is mentally deficient and non verbal. G-tube fed,

visually

impaired and is spastic. He's on a number of medications, including

baclofen,

muscle relaxant, etc.

He has 90 degree curvature.

I have nursing care for my son but recently one of the caregivers told me

that if he dies that I shouldn't cry because I made the decision for the

surgery.

The surgeon believes the surgery is indicated. I feel we are in a real

catch 22. During the recovery process, I am so afraid that he will run into

severe respiratory problems trying to clear his lungs of secretions and

develop

pneumonia, which he is very prone to do on a normal basis.

Thank you for letting us air our issues.

Best wishes to all of you who are going through your own issues in dealing

with scoliosis.

Michele and my son

**************Vote for your city's best dining and nightlife. City's Best

2008. (http://citysbest.

<http://citysbest.aol.com?ncid=aolacg00050000000102>

aol.com?ncid=aolacg00050000000102)