New member

[Guest guest]

That's a good idea, thanks. She has my respect; seeing what they have to

deal with, I couldn't do her job.

I have a school teacher friend who sprays Lysol all over everything (except

the children). She doesn't get sick very often.

[Guest guest]

I actually had to go to the ER naval hospital with my

youngest last week. There were so many really sick

kids, and no place to seperate us who were not so

terribly sick. Then the toys the kids play with,

eeeeeeewwwww, I asked the lady when they were cleaned.

She said " huh " , no wonder the kids get worse after

going to the ER. I kept my child to me and did not let

him touch ANYTHING.

Dawn

--- Maddviking@... wrote:

> In a message dated 2/22/2002 9:02:16 AM Eastern

> Standard Time,

> shamrockgreen7@... writes:

>

> << Max....

>

> I Can truly sympathize with the military medical

> care

> waiting lines !!! LOL

> >>

> It really makes me laugh when people want to go to a

> national health care

> system. If they only knew. Been there done that.

> Max

>

__________________________________________________

[Guest guest]

Hello Hazel,

I only have a minute, but I can tell you right off

that the Ezekiel bread recipe is NOT like the sprouted

grain ezekiel bread--the grains MUST BE SPROUTED for

you to be able to eat them ESPECIALLY for weight

loss,and one slice a day will do ya--keep it in the

freezer.

--- Hazel <hroberts@...> wrote:

> Hello All

>

> I'm new to this forum and am taking this chance to

> introduce myself. My name is Hazel, married for 46

> years, we have 7 children, 13 grandchildren, one

> great grandson and one dog.

>

> I was told about this way of eating by my

> hairdresser

> quite some time ago and I finally borrowed the book

> from the library and am in the process of starting

> to

> eat this way.

>

> Like many of you I have tried many, many different

> diets

> in order to lose weight. Some were successful,

> others

> were not. I usually get fed up with all the

> restrictions

> and go back to eating the old way. One such diet

> was the

> Carbohydrate Addicts Lifespan Program. That one was

> way

> to restrictive for me. I'm sure I will have many

> questions

> along the way. I find a lot of my favorite foods

> are on the

> avoid list so I guess I will just have to adjust.

>

> One question comes to mind right now is,

>

> I am planning on making some Rye bread today or

> tomorrow.

> Doe's anyone out there have a good rye bread recipe

> they

> would care to share? (Either bread machine or

> regular baking?)

> For that matter any bread recipe using the

> acceptable flours

> would be appreciated.

>

> I found a couple of Ezekiel bread recipes at

> www.allrecipes.com

> Here is one of them.

>

> Ezekiel Bread

>

> * 2 1/2 cups wheat berries

> 1 1/2 cups spelt flour

> 1/2 cup barley

> *? 1/2 cup millet

> * 1/4 cup dry green lentils

> 2 tablespoons dry Great Northern beans

> * 2 tablespoons dry kidney beans

> 2 tablespoons dried pinto beans

> 4 cups warm water (110 degrees F/45 degrees C)

> 1 cup honey

> 1/2 cup olive oil

> 2 (.25 ounce) packages active dry yeast

> 2 tablespoons salt

>

> Directions

> 1 Measure the water, honey, olive oil, and yeast

> into a large bowl. Let sit

> for 3 to 5 minutes.

> 2 Stir all of the grains and beans together until

> well mixed. Grind in a

> flour mill. Add fresh milled flour and salt to the

> yeast mixture; stir until

> well mixed, about 10 minutes. The dough will be like

> that of a batter bread.

> Pour dough into two greased 9 x 5 inch loaf pans.

> 3 Let rise in a warm place for about 1 hour, or

> until dough has reached the

> top of the pan.

> 4 Bake at 350 degrees F (175 degrees C) for 45 to 50

> minutes, or until

> loaves are golden brown.

>

> What concerns me is the items I have marked with an

> asterisk*

> Unless I am wrong these are on the avoid lists.

> Should this

> be a concern?

>

>

> If someone cares to share email me direct as I am on

> digest.

> Plus if you do please put {Bread Recipe} in the

> subject.

> I get so much Spam and delete a lot of junk and I

> don't want

> to delete any recipes.

>

> Thanks Hazel

>

>

__________________________________________________

[Guest guest]

Hi ...

Electrical stimulation was found to be of absolutely no value and was

dropped from treatment protocols. From the National Scoliosis

Foundation's web site (http://www.scoliosis.org):

Q: What about the electrically stimulated and observed patients?

A: After five years, 70% of those using electrical stimulation or being

observed had progressed 6 degrees or more. We found there is no

difference whatsoever between electrical stimulation and observation.

Electrical stimulation is now discarded as a method of treatment.

Unless there is a problem with your spine, your Harrington rods will

last the remainder of your life.

Most people with spinal fusions have uneventful pregnancies. If you

want to do some reading on the subject, you can start here:

http://www.google.com/search?hl=en & q=%2Bscoliosis+%2Bpregnancy & btnG=Google+Searc\

h

Regards,

[Guest guest]

,

I cannot speak as an expert, just from my experience. I had Harrington rod

surgery in 1974 and had it removed last year (with revision surgery). The

rod itself was fine. I had two pregnancy with the Harrington rod in place

and experienced no problems whatsoever. In fact, I had the least amount of

back pain in my life while pregnant. Go figure.

Donna

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

Hello & welcome! Enjoy that fresh bread, but don't forget about

the O diet. It's most effective when Starch free. Always balance

starches with protein.

Love

http://www.foodforyourblood.com <http://www.foodforyourblood.com/> for

your nutritional needs.

New Member

Hello

Ross here I'm 47 live in Canada on a beef farm (perfectlol

gotta love that beef)

i am muddlin my way thru this and my first loaf of spelt bread is jut

out of the oven

i am looking forward to meeting and chattin u all for insperation

friendship and support .

[Guest guest]

Hello ! I'm in Canada too, but unfortunately not on a beef farm! LOL!

I'm also new to the list, but welcome anyway. ;-) (that's a wink) I

haven't noticed any chat except on the list, but you can sometimes find me

on AIM at CathquiltDoyle... same on MSN Messenger. Say hi if you catch me

on there sometime!

How can you reap if you don't sew?

IM: CathquiltDoyle

ICQ: 30807996

New Member

Hello

Ross here I'm 47 live in Canada on a beef farm (perfectlol

gotta love that beef)

i am muddlin my way thru this and my first loaf of spelt bread is jut

out of the oven

i am looking forward to meeting and chattin u all for insperation

friendship and support .

[Guest guest]

Hi a...

I haven't had to have revision surgery, but know people who have. If

all that needs to be done is fusing a pseudarthrosis and

reinstrumentation, the surgery probably won't be as difficult as the

original surgery.

Will you disclose the name of your original surgeon? I'm glad to hear

that he admits when he's over his head.

Please check to be sure that the revision surgeon is someone who is well

qualified to do your surgery. If you'd like recommendations for good

revision surgeons, let us know where you live.

Here's an excerpt from a resource brochure that I created, about

choosing the right surgeon:

Be sure that your specialist is not a general orthopaedist. You can

find a list of scoliosis specialists at:

http://www.srs.org/htm/mbrlst/mbrlst.htm

I'm sure that there are SRS members who are not good specialists, and

that there are good specialists who are not SRS members, but it’s a good

place to start.

If possible, get a second opinion from another scoliosis specialist.

Get the names and phone numbers of a half dozen patients who are

undergoing, or who have undergone, similar treatment with your

specialist. And, call those patients to get their opinions.

Ask about your specialist’s education. Were they fellowship trained?

Did they do an accredited spinal deformity fellowship?

If surgery is necessary:

- Ask how many similar surgeries the specialist typically performs in a year.

- Ask if the other surgeon(s) and hospital staff that will be involved,

have a lot of experience with similar patients.

- Ask about your specialist’s outcome statistics in regard to serious

complications.

Regards,

[Guest guest]

a,

I am 44 years old. Last year I underwent revision surgery. My first surgery

was in 1974 with Harrington rod and 1976 for unstable fusion. I had my

revision done at Northwestern Memorial in Chicago by a fabulous

neurosurgeon. My original fusion was L4-S1, I believe, and now my fusion is

T2-S1. He felt the need to do such extensive work because the point above

the fusion is the weakest point, and I made it clear I would not be wanting

further surgery, let's just get it done now. He used an

posterior/anterior/posterior approach on two seperate days. The entire

surgery was over 30 hours. He needed this approach partially because of my

previous instrumentation. He removed 6 discs, replacing them with titanium

cages filled with bone chips obtained from the removal of two of my ribs,

for a more stable fusion. I was in the hospital 2 1/2 weeks, acute rehab

another 2 weeks. It was a rough recovery, mostly due to leg weakness and

pain, but I suffered no complications from the surgery. I now am able to

enjoy life like I hadn't in the last 20 years. I work, keep house, and enjoy

my kids. Good luck to you. Where do you live?

Donna

..

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Thank you so much for the information. The surgeon who did the original

spinal fusion is Dr. Jerome Kolavo in Winfield, Illinois. He has referred

me to Dr. DeWald at Rush in Chicago. I'm also going to get

another opinion from Dr. Schafer at Northwestern. Dr. Kolavo feels

that the staff at Rush has the most experience in revision surgeries. Dr.

Kolavo also described the revision surgery as involving some sort of fusion

to the pelvic region and he told me that it would be much more complicated

than the original surgery and that scared me to death since my first

surgeries were both 12 hours and one week apart. My recovery time was

almost 6 months.

I'm planning to write a list of questions for Dr. DeWald since the last time

I saw him he didn't speak to me at all, but addressed his colleagues

instead. So when I see him this time, I'm hoping he'll actually speak to

me. I haven't had much luck finding orthopedic surgeons who have good

reputations as surgeons and who also have good patient contact skills. I

guess the most important part is the ability as a surgeon though so I'll put

up with a less than personable doctor.

At any rate, thank you for your words of encouragement, and the list of

questions. I'll put them to use.

a

Re: New Member

Hi a...

I haven't had to have revision surgery, but know people who have. If

all that needs to be done is fusing a pseudarthrosis and

reinstrumentation, the surgery probably won't be as difficult as the

original surgery.

Will you disclose the name of your original surgeon? I'm glad to hear

that he admits when he's over his head.

Please check to be sure that the revision surgeon is someone who is well

qualified to do your surgery. If you'd like recommendations for good

revision surgeons, let us know where you live.

Here's an excerpt from a resource brochure that I created, about

choosing the right surgeon:

Be sure that your specialist is not a general orthopaedist. You can

find a list of scoliosis specialists at:

http://www.srs.org/htm/mbrlst/mbrlst.htm

<http://www.srs.org/htm/mbrlst/mbrlst.htm>

I'm sure that there are SRS members who are not good specialists, and

that there are good specialists who are not SRS members, but it's a good

place to start.

If possible, get a second opinion from another scoliosis specialist.

Get the names and phone numbers of a half dozen patients who are

undergoing, or who have undergone, similar treatment with your

specialist. And, call those patients to get their opinions.

Ask about your specialist's education. Were they fellowship trained?

Did they do an accredited spinal deformity fellowship?

If surgery is necessary:

- Ask how many similar surgeries the specialist typically performs in a

year.

- Ask if the other surgeon(s) and hospital staff that will be involved,

have a lot of experience with similar patients.

- Ask about your specialist's outcome statistics in regard to serious

complications.

Regards,

[Guest guest]

That's so encouraging. I'm also from the Chicago area - Lisle in the

western suburbs. My original surgeon has referred me to Dr. DeWald at Rush,

although I would prefer to go to Northwestern. I had spoken with Dr.

Schaefer before my previous surgery but opted to go with Dr. Kolavo

at Central DuPage Hospital. That could have been a mistake - I'll never be

sure. Thank you for the words of encouragement. Who was the doctor who

performed your revision surgery, if you don't mind sharing?

Thanks,

a

Re: New Member

a,

I am 44 years old. Last year I underwent revision surgery. My first surgery

was in 1974 with Harrington rod and 1976 for unstable fusion. I had my

revision done at Northwestern Memorial in Chicago by a fabulous

neurosurgeon. My original fusion was L4-S1, I believe, and now my fusion is

T2-S1. He felt the need to do such extensive work because the point above

the fusion is the weakest point, and I made it clear I would not be wanting

further surgery, let's just get it done now. He used an

posterior/anterior/posterior approach on two seperate days. The entire

surgery was over 30 hours. He needed this approach partially because of my

previous instrumentation. He removed 6 discs, replacing them with titanium

cages filled with bone chips obtained from the removal of two of my ribs,

for a more stable fusion. I was in the hospital 2 1/2 weeks, acute rehab

another 2 weeks. It was a rough recovery, mostly due to leg weakness and

pain, but I suffered no complications from the surgery. I now am able to

enjoy life like I hadn't in the last 20 years. I work, keep house, and enjoy

my kids. Good luck to you. Where do you live?

Donna

..

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

<http://photos.msn.com/support/worldwide.aspx>

[Guest guest]

Moderator's note: Content of previous messages was removed.

Re: New member

Thanks for the greeting, Daisy. I only just started the MTX last

week, so I haven't noticed any real side effects yet. I was a

little

nauseous last week. What are your side effects? I agree that it

will be hard to continue taking it if there are side effects,

because

I want to feel the benefit is greater than the risk, not vice

versa!

y rheumatologist keeps telling me " You are young and healthy... "

Seems humorous when I'm in agony, but we have to keep telling

ourselves that, ha!

-- In @y..., Daisy McClellan <daisiesbabies@y...> wrote:

>

> ,

> Welcome back. I am daisy, 42, Wife, Mom, Grandmom and full time

career.

[Guest guest]

now my fusion is

T2-S1. .....I now am able to

enjoy life like I hadn't in the last 20 years.

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

Donna,

Are you completely off of pain medication?

How did the surgery affect your mobility and flexibility?

Sanette

--

__________________________________________________________

Sign-up for your own FREE Personalized E-mail at Mail.com

http://www.mail.com/?sr=signup

[Guest guest]

In a message dated 9/24/02 9:34:24 AM Central Daylight Time,

kuntzp@... writes:

> Has anyone else had to undergo revision surgery? If

> so, can you tell me anything about your experience? I would appreciate

> any

> help you can give me.

>

>

>

I am in the same position as you are and am choosing the drug route, not

surgery at this time.

[Guest guest]

Sanette,

I am usually taking zero pain meds now. I do have problems at night, with

shoulder and neck pain, and headaches I believe to be from my fusion. But,

my back is pretty much pain free. There are days, either weather related or

because I have done way too much, that I do take Vicodin, but those days are

nothing like what I lived with before surgery. My mobility/flexibility - now

there's another story. I get frustrated by my limitations, for instance,

picking things off the floor - forget it. And that's a problem at work. At

home, I use my toes, quite well. I have difficulty putting socks on, haven't

even tried pantyhose yet, shaving my legs is miserable (too graffic?),

Chairs are a problem for me, as are most car seats. I have a pillow behind

me in the car, and seek how specific chairs at work. But my family reminds

me that two years ago, I could not have gone to work, made dinner, cleaned

up, and play with my kids all in the same day!! I'm learning to accept my

limitations.

Donna

...

>__________________________________________________________

>Sign-up for your own FREE Personalized E-mail at Mail.com

>http://www.mail.com/?sr=signup

>

>

>

>

>

[Guest guest]

" He's been on Remicade for a little over a year which doesn't

work any longer. "

I too have the same problem - nothing seems to be working. My rheumatologist is

referring me back to pain management and sports medicine because I'm limping so

much. But I still work almost fulltime and will return to UCLA next year. I

will not give up.

Your caring attitude towards your husband must help him immensely. I've found

that everyone just sort of left when I got sick. My parents don't want to talk

about it, and they definitely don't log on to this site to get more information.

My boyfriend just broke up with me because I was a " drain " - great.

I agree that it's time for all suffering RS patients to band together and raise

more funds gain more recognition. I " m sick of hearing of misdiagnoses and

unnecessary surgeries.

[Guest guest]

In a message dated 9/27/02 1:42:23 PM Eastern Daylight Time,

lbulifant@... writes:

> What do we have to do to get this disease recognized and researched? What

is the probabibility of one of them developing this? When can they be tested

for this gene that carries the disease? Enbrel has worked wo!

nders on people with RS and other forms of Spondyloathropathies. It is also

extremely hard to get a hold of. Why is this? Does anybody know if the

disease will ever run it's course and end it's attack on the body? I've

heard that it can go into remission. What is really meant by that?

Dear LB, we certainly understand your frustrations with coping with this

disease. Your questions are the same questions that most of us have had. Over

the last 5-10 years there has been real steps to understanding the

complexities of the Spondyloathropathies and other autoimmune diseases. Up

until the last few years, the only treatment for the spondys was NSAID,

exercise to maintain flexibility, some DMARD (disease modifying) medications,

like methotrexate and plaquenil. As you and your husband know, there is much

interest in the newer anti-TNF drugs (like Remicade/Enbrel). Many in our

group are trying these drugs with optimistic hopes. Others in our group, have

a wait and see attitude. These drugs are still very new to us, therefore,

some of us are watching with increasing interest. Since this drug is still in

the clinical studies for our disease, I suppose some of us are waiting to see

what the long term side effects are and some of us may have some questions as

to the long term results (like if it will truly put someone into a

remission/or whether you will have to remain on this drug indefinitely, to

keep from symptoms. ) We all know that there is a large percentage of people

that have improved while on this drug. It does give each and every one of us

promise and hope. It is my opinion that the people that have gone on to try

this drug have a severe form of the disease and have tried other drugs

without any success. They, and their doctors, have weighed their symptoms

with the benefits of trying the harsher drugs. This disease does not have a

cure.

They do not advise testing your children for the disease until of " if " they

have symptoms. Even if they were to test positive for the HLA B27 antigen, it

would not help to prevent the disease. There is no prevention for these

diseases. The odds are low as to anyone who even tested HLA B27+ will get

the disease. In the future, when they know more about the genetic makeup of

this disease, there is hope that the disease will one day be prevented. This

hour is not yet come.

There was such a demand for Enbrel....after it first came out. It had less

side effects than Remicade and was easier to give (by injection vs infusion),

and the pharmaceutical company were not yet prepared for the demand of the

drug. They are building other pharmaceutical buildings just to take care of

the demand for the drug Enbrel. I believe the preparation in making the drug

is very complex too and takes time. They say that they will open the new

building early next year. Many are on waiting lists for this. They are

starting a new clinical trial for Enbrel just for Ankylosing Spondylitis

patients. I have heard that they have even better results than RA patients. I

believe your husband sounds like he has advanced to this stage of spondy

(fusing up and down spine, etc.). Does he have definite RS symptoms

(prostatitis/ rashes/ mucous membrane ulcers/ arthritis of lower extremities

(the triads of RS) or is the disease completely located in spine/hips/ribs,

etc?) After a trip to Mexico, I also developed Typhoid Fever and it may have

been a trigger for my Ankylosing Spondylitis? It has been documented that

some people do have a complete remission from symptoms of RS. This means that

there are absolutely no symptoms for many months or years. Most of us with

chronic symptoms (over 6 months) have definite flares where the disease is

worse than at other times. I do not think, that if the disease goes on to AS,

that there are as many in remission. It usually is a disease for the duration

of ones life. I have heard that when someone fuses completely, that there may

be a period of less symptoms. I have not found this true of people that have

real chronic symptoms (over many years). It may be helpful if you would see

the NASS web site listed at the bottom of my post. It is loaded with much

information....mostly about AS, but it does sound like your husband has these

symptoms with his back. It shows him the exercises that might be helpful.

Please keep us posted to his progress. We care and know of your frustrations

in dealing with this chronic disease. Please don't be overly concerned about

your children having the disease. There really isn't anything you can do and

you needn't worry for something that hopefully may never happen.

Best regards, Connie (granny)

http://www.nass.co.uk/

[Guest guest]

Hi LB:

Welcome to our group.

I can relate to your concerns. My husband suffers from psoriatic arthritis.

He's 40 years old. He's tried most of the meds mentioned here. He was on

Remicade for a few months. He felt a lot of improvement at first, he even

stopped taking pain medication. Then it seemed to be less effective. The

doctor said it happens sometimes. He suggested to shorten the period

between the infussions. My husband decided to stop taking the med. He

doesn't see any doctor currently. He's taking Arcoxia. He doesn't feel he

needs a doctor anymore. He takes whatever he feels works best. We live in

Mexico, so he doesn't need a prescription to get whatever medicine he likes.

I'm not particularly pleased with the situation. My husband took vioxx for

several years, then decided to switch to Arcoxia. He doesn't want to try

Enbrel. He says we don't know the long term effects of this new meds. He's

able to function right now, so maybe he doesn't feel the need to try

anything else. He hated the metho.

I'm very sorry to hear your husband hasn't had any remission since you were

married. We didn't find out about my husband disease until 7 years ago. By

then we already had our two children.

This disease is very isolating. I don't worry about what other people think

anymore. It's very hard to make them understand what living with the disease

is like. My husband doesn't look ill at all, except for a little limping as

he walks.

I can relate to your concerns about your children having the disease too. I

wish there was a way to prevent it. Our children have been amazingly

healthy, which makes me wonder about them having an overactive immune

system. My husband's negative for the gene. But several members of his

family suffered from different types of arthritis, including his father.

I'm sure you'll find a lot of understanding and support here. This group has

been a blessing for us.

You'll be in my prayers. Please keep us posted.

Sincerely,

Ana

[Guest guest]

Granny said:

> There was such a demand for Enbrel....after it first came out. It had less

> side effects than Remicade and was easier to give (by injection vs infusion),

> and the pharmaceutical company were not yet prepared for the demand of the

> drug. They are building other pharmaceutical buildings just to take care of

> the demand for the drug Enbrel. I believe the preparation in making the drug

> is very complex too and takes time.

Injection is easier than infusion??? Not for me. I hate being stuck and

one stick in 8 weeks is easier for me than one daily. My dr. had said that

Remmy didn't have any more side effects than enbrel. I don't know..I'm

confused. I'm at the point of...I just don't know. I'm just sort of

taking a step and another step...not knowing where I'm going. I thought

remmy was going to be really helpful but if I'm going to have problems

with my liver then....what next...

>

Liz

~~~

" Mistakes are the portals of discovery. " -- Joyce

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

EMAIL: juliette@... **ICQ 49746198** MSN & AIM LizKP1952**

PERSONAL HOMEPAGE PAGE http://members.tripod.com/~LizK

ADDult HOME PAGE: http://members.tripod.com/~LizK/addult.htm

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Guest guest]

Hi Donna.

Is good to hear that you are coping much better now post-surgery. A few

things you mentioned were alarming for me as surgery is something i might

have to consider within the next few years. When you say that your

flexibility is severely limited to the point where you cannot pick things

off up the floor or have problems shaving your legs and putting on socks, is

this particular to only your type of surgery or does everyone who undergoes

scoliosis surgery usually have such limitations?

I am aware that surgery done on a lumbar curve can be more restricting.

It is very disconcerting that such simple tasks such as those become major

obstacles :-(

-Roslyn

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Roslyn,

My prior surgery was a fusion L4-S1 and I experienced no limitations that

were noticeable to me. This recent fusion is T2-S1 and my limitations are a

result of that top fusion. Where unfused bodies curve forward in the

thoracic region when reaching or stretching forward, mine doesn't allow me

to do that. So to complete a reach to the floor from a squat position is not

possible. To reach to my legs to shave, while unfused bodies curve that

upper back, my upper back is rigid and my arms don't benefit from that

forward extension. Does this make sense? I've had a difficult time

explaining this to my husband, but I demonstrate on his back vs. mine, so

now he sees and understands. It's harder to put into words. It is probably

the most unsettling aspect of this surgery. HOWEVER, that said, my quality

of life since the surgery is WAY better than before. I get a little upset

with the surgeons who don't realize how a person's life will be effected. I

would have liked a more informed explanation before surgery, so I wouldn't

have been surprised after. I still would have had the surgery, because most

days I felt life was not worth living, what with all the pain I was in. Now,

my limitations are an annoyance to adjust to. I don't mean to frighten

anyone facing this surgery, but I do want you to know what is ahead, from

the perspective of a patient, not the surgeon who hasn't experienced it.

..

>..

>_________________________________________________________________

>MSN Photos is the easiest way to share and print your photos:

>http://photos.msn.com/support/worldwide.aspx

>

>

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

Hi Roslyn...

The restriction of bending is only a temporary thing. Until fusion has

started to take hold, movement of the joint could cause non-fusion.

Many doctors put their patients into a post-op TLSO brace as a reminder

not to bend or twist. In addition, at least for me, the surgery made me

feel very stiff. I regained my flexibility over time. Because I have a

long fusion, I'm less flexible than I used to be, but not as inflexible

as I had imagined.

Regards,

[Guest guest]

In a message dated 9/29/2002 12:45:59 PM Eastern Daylight Time,

lindaracine@... writes:

> Many doctors put their patients into a post-op TLSO brace as a reminder

> not to bend or twist.

, etc:

As an addendum to what said, following my second surgery within six

week of my first (fused T9 -- S1) due to loose lumbar hooks, a leg extension

was added to my TLSO in order to further reduce my ability to bend or twist.

I have heard of others having the leg extension.

S.

[Guest guest]

Hi Ana and Granny! Thank you both for your responses. Granny, yes

my husband has an advanced form of AS or RS or whatever they want to

call it tomorrow. He is fused in the neck area and can no longer

stand up right. He is very active considering his condition. He is

on that waiting list for the drug. He has a wonderful doctor at Duke

that has been treating him for a little over a year. I actually

looked up the drug Enbrel as he was suggesting it to my husband. Now

we have to wait. My husband did get off of all the pain meds while

on Remicade but his body decided to react badly to remmy after a year

or so. He almost went into cardiac arrest during his July infusion.

He was up to 1 infusion per month and they had upped the dose. I

guess when your body is done tolerating a particular drug.. It's just

done. I've introduced him to this site and he is going to become a

member. It is interesting to see that everybody on this board seems

to react differently to the different drugs. I have heard that the

body tolerates Enbrel very well. I hope with all my heart that this

new drug will work wonders and that it will work for a very long time

if not for the duration of the RS.

Ana, thank you as well for your input. It's nice to hear from others

that are going through this as well. Where in Mexico are you? My dh

and I were in Cancun when we both became very ill. This was when the

disease began. We were young, quit our jobs and lived there for 4

months (until colera became a local concern). Aside from the

illness. We had a GREAT time. That was 8 years ago.

If anybody out there is on Enbrel already, please let us know how it

is going. At this point my husband is not concerned about long term

affects. If it can have him live a better life now, then that is

what he wants. I will support him in any direction that he wants to

go.

Liz.. Good luck to you. It sounds like your liver is causing

additional problems. I am very sorry about that. Is it because of

the drugs from treatment?

Gotta run.. Baby girl is getting fussy.

LB

> Hi LB:

> Welcome to our group.

> I can relate to your concerns. My husband suffers from psoriatic

arthritis.

> He's 40 years old. He's tried most of the meds mentioned here. He

was on

> Remicade for a few months. He felt a lot of improvement at first,

he even

> stopped taking pain medication. Then it seemed to be less

effective. The

> doctor said it happens sometimes. He suggested to shorten the

period

> between the infussions. My husband decided to stop taking the med.

He

> doesn't see any doctor currently. He's taking Arcoxia. He doesn't

feel he

> needs a doctor anymore. He takes whatever he feels works best. We

live in

> Mexico, so he doesn't need a prescription to get whatever medicine

he likes.

> I'm not particularly pleased with the situation. My husband took

vioxx for

> several years, then decided to switch to Arcoxia. He doesn't want

to try

> Enbrel. He says we don't know the long term effects of this new

meds. He's

> able to function right now, so maybe he doesn't feel the need to try

> anything else. He hated the metho.

> I'm very sorry to hear your husband hasn't had any remission since

you were

> married. We didn't find out about my husband disease until 7 years

ago. By

> then we already had our two children.

> This disease is very isolating. I don't worry about what other

people think

> anymore. It's very hard to make them understand what living with

the disease

> is like. My husband doesn't look ill at all, except for a little

limping as

> he walks.

> I can relate to your concerns about your children having the

disease too. I

> wish there was a way to prevent it. Our children have been amazingly

> healthy, which makes me wonder about them having an overactive

immune

> system. My husband's negative for the gene. But several members of

his

> family suffered from different types of arthritis, including his

father.

> I'm sure you'll find a lot of understanding and support here. This

group has

> been a blessing for us.

> You'll be in my prayers. Please keep us posted.

> Sincerely,

> Ana

[Guest guest]

Roslyn,

I, too, am fused to the sacrum and have the same problems as

regarding shaving and getting on my socks. I am almost 2 years post-op, so

i don't think the situation is going to change. I can pick up most things

off the floor, either by bending and swiping (not too advisable), or

getting down on one knee as the physoitherapist advised. You do get used to

the limitations but they can get you down psychologically. I hate the

morning sock battle. Hope this doesn't scare you off the surgery - because

if it's necessary, there's really not much choice. Are you sure you are to

be fused to the sacrum? I had more mobility when I had just one vertebra

free (had originally been fused to S5).

Take care and good luck,

from Italy