Re: Vioxx and celebrex

2006-12-31 22:04:07

In a message dated 09/03/2000 1:56:48 AM Pacific Daylight Time,
Scoliosis-Medical@egroups.com writes:
<< Vioxx and Celebrex are supposed to be that they do
not irritate the stomach.
Paul....I know that Celebrex is " not supposed to", but it does VERY much
irritate mine. It becomes too much of an extreme side affect when it does
nothing for my pain to begin with. Guess I don't follow the manufacturers
norm. I don't have any experience with Vioxx. Jolene

Internet 'Carpetbaggers': What Are They Selling? Who's Watching?

2006-12-31 11:58:43

http://www.acsh.org/publications/priorities/0903/internet.html

Re: Digest Number 26

2006-12-31 09:38:10

I took Neurontin for about two months. I didn't think I had any
results from it at all. So I stopped. Some people have results
though. It is used for fibremyalgia (spelling?).
Paul

Open Directory - Health: Conditions and Diseases: Musculoskeletal Disorders: Scoliosis

2006-12-31 08:39:21

http://www.dmoz.org/Health/Conditions_and_Diseases/Musculoskeletal_Disorders/Sco\
liosis/

Check out Campaign 2000 Outreach

2006-12-30 18:40:16

<A HREF="http://www.medscape.com/medscape/promo/public/camp2000mscp.html"
ck here: Campaign 2000 Outreach</A
http://www.medscape.com/medscape/promo/public/camp2000mscp.html
Here's a chance to be heard to ask for funding for scoliosis research and
indicating why scoliosis should be classified as a disease by NIH so it can
receive funding instead of treated like a teen condition that is cured by
bracing/surgery. Those of us as adults realize that once you have scoli as a
teen you are never "cured", maybe the progression is stopped or slowed, but
the condition exists under all the hardware. Our arthritis of the spine
below the fusion exists, osteopenia/porosis exists in many of us, MPV exists
in many of us, heart/lung problems exist in some of us, chronic pain exists
in many of us, further surgeries, other medical complications, and sometimes
our ability to be employed is very real and it's time we shouted to others
not on the list. Jolene

(no subject)

2006-12-30 17:29:39

http://www.soulselfhelp.on.ca/left.html

Re: [Scoliosis-Medical] Digest Number 26

2006-12-30 16:45:16

On the subject of Vioxx, I have been taking it for a couple of months now,
at 25 mg. per day. I've been taking it with my dinner at about 6:30, and
for the last couple of weeks have not been sleeping very well. Partly
because of pain, but am not sure if the vioxx has anything to do with it.
I've noticed some pain relief from my osterarthritis, and DDD, but not
nearly enough. This week my Dr. added taking neurontin 300mg. once a day
with the Vioxx. Has anyone had any pain relief from neurontin? I've only
been on it a couple of days, but I can't see any chnge in my pain levels. I
usually take 2 ultram in the afternoon for achiness & pain.At 09:08 AM

***************Lets Talk OK?*******************************

2006-12-30 07:29:54

Well never get anywhere hidding infear or whatever avoiding the real
problem.
Karl

Re: Vioxx

2006-12-30 02:52:43

The benefits of Vioxx and Celebrex are supposed to be that they do
not irritate the stomach. Both are supposed to be comparable to high
doses of Advil in strength and they can be taken for long periods
without problems. However since I have a very low tolerance to NSAIDS
my doctor told me to take it only with food. I guess I will try it
for a while but so far it doesn't seem to be strong enough to be
noticeably helpful with me.
Here is what the info sheet says: "Your body produces chemicals
called prostaglandins. Some of these prostaglandins help line the
stomach with a protective layer. In arthritis, other prostaglandins
cause pain and swelling. At prescribed doses, Vioxx does not effect
the type that maintains the protective layer of the stomach, and
reduces the change of bleeding."
Since I mentioned Advil I would like to make a comment. Advil has
always been my drug of choice for severe pain. However I noticed that
the generic versions are not as good as the real Advil. I asked my
pharmacist about that and he said that it was the way in which they
made the drug that sometimes matters more than the formula. Anyone
else notice any difference between generic and the major brand?
Paul

Howdy again! Some what off topic but a consern to most "money".

2006-12-29 18:34:40

While I'm thinking about it, I know this is off the topic about scoliosis but live with it we have found to be very, very expensive the medical alone wiped us out.
It cost some much to live now-a-days.
Anyway there is a link to a "Once in a life time Opportunity" on the link site at egroup you might want to look at it. Two years ago when I first started looking into it, it had nothing to due with the "MLM" Industry, I was just concerned with the telecommunications end of it.and it was a success as it was but NU SKIN bought it. Well all the better money talks bull walks
Anyway this is a very excellent Opportunity for anyone but I was thinking about the disabled, moms etc. you know those stuck in the house and want to start a business of their own well here is a great chance to do that look into it sometime.
If you think your interested let us know.

And for those interested we have no moneys in it yet other that the $25.00 to become a Rep.
And no we not using this group to advertise any business, just thought some might want a break in life rather than all the stuff dealing with scoliosis or ant other disabling disease has to offer. :(

Here's the link for more info.about Big Planet
* http://my.bigplanet.com/opportunity/presentation.html

View the site map at Big Planet to see all the programs and services they have to offer.

* http://my.bigplanet.com/sitemap.html

Have a good one!
Karl

Dan just some suggestions of mine.

2006-12-29 14:37:56

Some of what I am going to suggest has help me and it might do the same
for you OK?
Breathing the right way help a lot, inhale slowly through your nostril's
then exhale slowly as mush as needed especially when the pain is at it's
worst.
Depending on how mobil you are showering or bathing helps also.
If taking a shower let the water spray on your back as long as you can
stand it and get the water as hot as you can take but not to hot it will
cook you like a lobster.
Soaking in a bathtub is also very helpful but remember don't get the
water to hot.
A physical therapist can tell you how hot sorry I am not one.
This might sound silly but music and aromatheapery is also helpful.
So put on music you like and crack out the cents.
I know some of this sound silly but living with this disease is also.
Hope you get some relief. The best thing to do is seek help from you Dr.
or if the pain is to bad to deal with seek a Pain Clinic it is amazing
how it can help.
Karl

Re: [Flatback_Revised] New member

2006-12-29 00:42:42

Thanks for sharing your story, Joanne. You've already helped me. I had
considered getting a second opinion from Dr.Glazer, but had not heard from
anyone who had actually been operated on by him. I feel just a bit more
confident now that I've actually found a patient of his, especially since
you seem to be pleased with your outcome.
We definitely should have another Boston area get-together. We've gotten to
be quite a bunch!
Sharon in NH.

Howdy.

2006-12-28 22:35:55

Just wondering how ago was you surgery?
If it was resent the Dr. should be taking care of your pain.
If not find someone else who will take your case serious, that has
always been my problem no one has ever took me serious you know treated
me like the human we all are.
Karl

Hello Dan.

2006-12-28 14:06:23

Howdy;
Well I have been dealing with this thing called scoliosis for years and
Believe you me it gets old fast. I underwent an operation here in
Houston in 1985 it did not take just left me in very bad shape, pain all
the time muscle spasms etc..
The post op. pain should decrees a lot hopefully and then of course
there is the pain one might have to learn to live with.
I started taking a few drugs that has help a lot I was under the
impression that nothing would ever help but I was wrong.
I was shot on my birthday in 66 and at the age of 32 it was found I had
scoliosis.
Well it has develop into a lot of pain that is for sure anyway I started
taking Zanaflex
a few months ago and it has help 10x towards emlinating my pain, but in
my case there is some I can't get rid of just guess I have to live with
it but ask your Dr or Pain Management Dr. about the Zanaflex it has
worked wonders.
I have had to deal with pain in some form all my life I was put on
Zoloft for depression a while back and I can't believe it but it to help
with the pain guess after suffering with it for so many years it took it
toll on my mental state of mind, extreme pain will due that so you might
want to look into that also.
As a last resort I had a temporary pain pump installed it stop my pain
completely.
They use all kinds of med. in it but nothing seem to work so the Dr.
tried an experimental drug it was not approved by the FDA yet but it
work great but I don't seem to remember the name it started with a T
OWell maybe I'll remember later sometime.
Well nice talking to you I sure others will respond I hope so anyway.
Hope some of this helps and suggest a time when we can all go to the
chat room and get to know one an other OK?
If you ever want to talk or ask a question, just post the group someone
will answer
Have a good one.
Karl

Superior Mesenteric Artery Syndrome

2006-12-28 13:40:20

Hello Group,
I'm new to this list. I have a 13 year son who had an
anterior/posterior spinal fusion on July 13th. He was unable to
tolerate oral feedings after surgery and was diagnosed with Superior
Mesenteric Artery Syndrome. I was wondering if there is any one else
dealing with this condition. Basically it is a bowel obstruction caused
by the lengthening of the torso, the mesenteric artery and aorta put
pressure on the duodenum. It is suppose to resolve itself. It is
sometimes called "cast syndrome". They tried feeding him with an NJ
tube, but he didn't tolerate that due to a yeast infection in his
esophagus and intestines. Now they are giving his gut a rest. We are
home but getting TPN (IV nutrition) every night.
thanks for any help.
Cindy Price, mom to Evan age 13, SB L1-2/hydro , RTA type 4, spinal
fusion, SMA
CAPrice6@...

Re: [life-with-scoliosis] Lets Talk OK?

2006-12-28 03:28:31

My name is Dan, and I have some questions. How does someone help with the
pain after having surgery? I had surgery in March of 1999, and I am always
in pain. Has it got better for anyone, or is this something I will have for
life? I had surgery when my curves were only 36 and 46. The reason for it
was that it was pinching my spinal cord, and causing more pain than my body
could handle. When I was 17, my lower curve was 30 degrees, and of course
the doctor said that it would not get worse and surgery would never be an
issue. When I was 24, that is when I found out that it had gone from 30 to
46. Now I have had L4 to T5 fused, and I don't have too much pain with my
upper back anymore, but the lower back never fused properly. The curve was
brought back down to 20 degrees right after surgery, and now it is over the
46 that it was before. I have moved from Wisconsin to California, and I am
seeing a doctor out here for the first time on Thursday. One doctor in WI
said I should have surgery ASAP, while another one said to get in better
shape and take it from there. All doctors seem to have their own
opinion....Does anybody else have that problem too? Where have any of you
gone to get some real solid truthful facts? How have other surgeries gone
for you all? I will be 26 in Oct, and I want to know if I should look
forward to the future, or just go and get on disability or SSI. I am very
limited in what or how long I can do anything. I get exhausted quickly, and
cannot seem to stay in one place for too long. What have any of you done if
you have that problem? I have a year of school done, and am a 4.0
student....is it worth pursuing if I will not be able to work? these are
questions that people that supported me until recently are asking me. Can
anybody say that they can understand? I don't know anybody else personally
that has scoliosis to this degree, so you are the only ones I feel I can
talk to. Help?
Dan

RE: [Scoliosis-Medical] Vioxx

2006-12-28 01:47:49

Paul,
I am on vioxx right now and is awesome! My doctor just put me on it and it
(25 mg) once a day. Advil does nothing compared to this drug. If i take
advil i have to take it all day long and it still doesn't really relieve the
pain like vioxx does. ( vioxx isn't really a pain reliever more of an
anti-arthritic pain medicine) I have been on it for about 3 weeks and i am
so glad the doctor put me on it.
good stuff!
david vitanza

Vioxx

2006-12-27 14:23:51

Does anyone on the list have any experience with Vioxx? If the past
couple of days are any indication, and if I believe everything I have
read, it is no stronger than high doses of Advil. Has anyone had any
success with it over the long term.
Paul

Lets Talk OK?

2006-12-27 11:08:47

This is just a suggestion, why don't all of us at a time we all can attend and have a group talk get to know each other.

egroups "chat room" would be perfect everyone has access to it and their help menu. Should be rather simple to use.

I have never use it but looks promising.
Let me know what ya'll think OK?

To check out the chat room click on the link below http://www.egroups.com/chat/life-with-scoliosis

Karl

P.S. I know someone ask about it at one time sorry but the pain has had me down for some while. don't know how long it will
last I hope forever but what the hay.

Good morning all.

2006-12-27 08:03:04

Howdy everyone;

How is it going everyone?
How your feeling OK?

Well I noticed no one is saying anything, I can't believe that one with scoliosis. has all kinds of question or comments.
I can think of many different subjects to talk about, but you all should think of some questions yourself and post them.

I realy would like to know if everyone is finding out whatever it is there looking for?
If I can I would be glad to help.
I know I had many questions just trying to get this machine to do what I wanted. So if nothing else talk about that or the weather which sounds crazy to some but I know every time we have bad humidity here in Houston which is almost every day my body lets me know it. Most of the time I feel like rusting iron rubbing together.
Oh where would people be with out pain? I hate it myself.
If your a newbie and just concerned with scoliosis start with the links a Scoliosis World. That site is very informative and easy to use.

I put a link to artificaldisc on the links page yesterday you might want to look at it, it's nice.

The links page here at egroups is where all the data I have found about scoliosis is kept so please make use of it

My help is just a post away if one needs it.

Karl Coan

P.S. Here is the link page

* http://www.egroups.com/links/life-with-scoliosis

Need tech. help from the egroups team:

* http://www.egroups.com/help/messages.html

postural

2006-12-27 01:01:03

Although I did not get this particular message, but for this part quoted in
Paul's mail, I would like to add that postural problems are indeed physical.
Once the body's alignment is off, such as in the case of (most) scoliosis,
it causes other problems, such as balancing, which causes you to eg. lean
more on the one leg than the other, etc etc, which can cause joint problems
in the leg/hip/foot. Also being off balance places more stress on the discs
because of an uneven weight distribution.
original message:
is

Welcome to Artificialdisc.com

2006-12-26 19:45:25

Good evening everyone;

Never heard of this before was not aware that a disc could be replaced must be something new (good), thought some of you might find it interesting.
I will post it to the link page later.

Have a good one!
And happy hunting!

Karl

soft collar

2006-12-26 14:00:47

OK, Carole, I have to ask. What the heck is a soft collar? Please
explain! Thanks! ~kam

[Scoliosis-Medical] surgery

2006-12-26 09:26:24

sorry, I originally sent this one to the wrong list...

dear margaret the person who says its cosmetic surgery is an arsehole

2006-12-25 20:43:50

mine is only 20 degrees from scott

OnHealth: Therapists' New Prescription: A Little Music, Please

2006-12-25 17:08:27

It works for me try it.

Karl

[GCFL] Be nice to the nurse, or you'll pay!]

2006-12-25 15:11:22

ENJOY.
Karl

reply to Edie

2006-12-25 02:19:22

My mother says she and my dad were told if they didn't bring me for treatment the state could take me away from them! I think the doctor at Boston Children's told them that, some time in the early '60s, give or take a few years. I don't think they bothered to find out how true the statement was. It was made very clear that I had no choice.

Re: surgery

2006-12-24 22:21:15

For the sake of clarity I think that surgeons operate to correct
physical defects rather than to correct pain problems. Since the pain
can be caused by non physical conditions it is rather difficult to
identify the source of the problem. I guess that is the point I tried
to make earlier. Most surgeons will only operate to correct a real
physical problem. Those of us with chronic pain can not in a lot of
cases be cured that way.
I am not sure I agree with the earlier statement about when to
correct scoliosis. There are too many facets to it to issue a blanket
rule of thumb about whether it has progressed enough or whether the
organs are in danger of problems stemming from compression. I think
the only person able to make an assessment like that is the
orthopaedic surgeon. Like it or not they are the experts in the
fields. Personally they told my parents that I needed the surgery or
I would be in serious trouble by the time I was twenty.
Paul

Hughues + Bracing

2006-12-24 18:13:27

Good morning.
How are you today?

Here is a few links that might be of use.
The first one is on bracing.
The second one is the main site at Scolosi World.
One the site is a page of different languages, provided you need it.
I tried to send it yesterday but the site was inoperable .
If you have any trouble with access the info. you need post.

On the bottom of this page is a link to to the links page at egroups.
You will find some informative stuff there.

Karl & Penny Coan

Re: [Scoliosis-Medical] surgery

2006-12-24 07:28:51

In a message dated 08/26/2000 5:10:46 PM Eastern Daylight Time,
deja@... writes:
<< from the short time I have been
researching this issue, it appears that surgery to alleviate pain is a
non-issue, because either it will not alleviate the pain at all, or the new
pain it will cause will offset any benefits that may have been realized
from the surgery. So, no gain in the long run.
Not true. We are all different so a bleanket statement like this does not
really apply.
It depends to a great deal on what it is that is causing the pain.
Bonnie

Water Therapy

2006-12-24 06:44:46

The only kind of ab crunch I can do is on an upright Nautilus ab machine. I
don't even know if they are commonly available at clubs lately; I use a
friend's private gym. But sit-ups, etc. are painful for me, so it's obvious
I shouldn't do them.
The only hitch to the Nautilus machine is that it's hard for me to get into,
since I can't arch my lumbar spine.
BTW, I love what swimming does for my abs.
Sharon

Re: [life-with-scoliosis] orhhose

2006-12-24 01:58:01

Hugues;

No need to say sorry for your english. I am a Texan and can't spell worth a hoot myself. Compared to my son who is literate in a couple of languages and his wifey who at one time thought school to the disabled here in Houston is now putting together the questions for SAT test. I get corrected all the time one would think at this late date in my life I would know how to spell and talk but the Texas accent gets me all the time.

Something that might help you is the medical dictionary we put on the links page.

All you need do to access the link page is click on the link below.
* http://www.egroups.com/links/life-with-scoliosis

While you on the link page check out the scoliosis mailing list. I have not had time to explore the like I want but I feel certain you will find something about bracing either there or on one of the other links on the page.
Check out the link called Scoliosis World. They might possibly have a link to info. on bracing. Here is the link. Let me know if any of this helps please.
http://www.scoliosis-world.com/

Sense the bone structure never stops growing your body will always being going through so type of change this can be good or bad.
I don't know why bracing would not help to some extent like I said the body is forever changing.
Some where I have book marked some site on bracing I'll see if I can find them when I do I'll send it to you OK?

Karl

Welcome Margaret.

2006-12-23 15:22:21

Good afternoon Margaret;

How are you today?

Sorry to here about your situation although my situation is much different than yours is, I can relate to yours. I was once your age Ha Ha!!.
Scoliosis wasn't in my life till I was 32 in 1985 and at that time little was known about it. I have only recently found out some of the info.I wish I had access to so many years ago, but life was different then so please take advantage of the links I put pasted on the links page, they were put there in the hopes that someone would benefit from them.

It pleases me very much when I here that some is getting educated.
Being I was not able to finish school due to my medical , I now wish I would have been able to.
In today's world everyone needs one.

Anyway on the links page I have put a link that pertains to teen scoliosis this should be of help. It's called For Teens. To get there just click on this link. It's the last link on the page.
* http://www.egroups.com/links/life-with-scoliosis/

When you get there check out the FAQ's I feel certain some of your questions will get answered there.
When the FAQ page comes up like everything else just click on the question you'll be showed the answer.

There is more I want to say that might be of help to you but have to go now will talk to you later.
I have to do some stuff now so got to go, if you need help with anything let me or the group know.
If not me someone will reply.

Good luck!!
Karl in Houston

P.S. You might want to mention how much you know about this computer stuff it would help me and others allot to know this I don't want to talk down to you about this stuff.

surgery

2006-12-23 14:55:59

problems, but in the end it wouldn't make any difference<<<
Yes, Paul, from what I understand as well, from the short time I have been
researching this issue, it appears that surgery to alleviate pain is a
non-issue, because either it will not alleviate the pain at all, or the new
pain it will cause will offset any benefits that may have been realized
from the surgery. So, no gain in the long run.
My understanding is that if no organs are being threatened, and if the
curvature is not progressing at an alarming rate, then basically "leave
sleeping dogs lie", and although, as you said, there will always be a
surgeon out there who wants the practise and the money, the "cure" may be
worse than the "condition".
Is that what others understand to be the situation, as well?
Deb

orhhose

2006-12-23 10:09:14

Dear Karl and Penny, before sorryfor my bad englich, I from
Switzerland.
I have a question: I'm 33 years hold and I have a scoliosis, with my
age it is not so late for wearring a orthose like Milwauke brace or
other?
Thank you in advance
Hugues

Hello everyone!!

2006-12-22 21:02:04

Hello and good afternoon to everyone out there, my name is Margaret
and I suppose I am the newest member to your list. First let me tell
you a little bit about myself - I am 18 years old, and will be a
freshman in college in a few weeks, which I am thrilled about!! I do
have scoliosis, and was diagnosed with the condition when I was in
7th grade. My turn has now progressed to 63 and 50, I believe, at my
last check-up. Next summer is set aside for me to have corrective
surgery, and that brings me to why I joined your list. There is a
big of a struggle between my parents over my surgery - one believes
it is necessary, and the other feels it is just "cosmetic" surgery.
Can anyone out there help me? Do you have an experiences with
surgery - the good and the bad that you can share with me? I'd
really like to know what I'm getting into next summer. Please help
if you can!!! Thanks so much!

Part II-Pain

2006-12-22 15:41:12

Part II...
3.13. Passing the medical test
Claims for compensation, as with benefits, must be
supported by medical evidence. It is to be hoped that
Judith's account of her medical examination is as
untypical as it is shocking. Indeed, she said nothing of
this event until the interview was approaching its
conclusion and the tape recorder switched off because she
was afraid that it would not be believed. She was asked
to attend an orthopaedic surgeon at a
hospital 30 miles from home (since her accident, she
suffers frequent panic attacks during such journeys). She
was kept waiting for an hour and a half and was then
interviewed, without apology, in a very
confrontational and off-hand manner within earshot of
five workmen who were installing computer cabling in the
surgeon's office. The physical examination, which took
place in an adjacent cubicle, involved a
lot of painful prodding. Her demoralisation was complete
when the surgeon's fist was brought down hard and without
warning on her head. As she burst into tears, he
commented `I suppose that hurt as well,
did it?'. Judith seemed unaware of the significance of
this remark; pressure on the head does not exacerbate
back pain and is used to test for exaggerated pain
responses. She had since been offered a derisory
level of compensation. Other reasons for this may have
been that she had continued to maintain a full-time job,
in spite of pain and the panic attacks which now
afflicted her, and was not eligible for legal aid
which would have enabled her to pursue her claim any
further. She and her husband, who had recently been made
redundant, now faced having to sell their house to meet
their financial commitments. Holloway
(1994) described how claiming compensation is often a
secondary concern among those with a genuine debilitating
condition and desire to return to normal health, brought
about by lack of alternative sources
of financial security. He suggested that, within a
victim-blaming medico-social-legal system, victims are
accused of faking their condition and diagnosed as
suffering from `compensation neurosis'. However,
rather than the patients malingering, it may be the
physicians who suffer from `malingerophobia' (Pilowsky,
1985). Judith felt that she had been punished for her
determination to carry on a normal life. She felt
deep anger which she did her best to suppress, though it
manifested itself in tears of frustration. Her anger was
directed not at her employer whose fault it was that the
accident occurred; not at her solicitor
who had failed to gain reasonable compensation for her
suffering; nor even at the doctor who had treated her
with such contempt, but at her own inability to deal with
the system.
4. Conclusion
The accounts given by our participants combine to
illustrate how those with back pain are effectively
rendered passive and powerless, entrapped by systems
which were designed to help and protect those
who are ill, injured and disabled. Frustration with `the
system' was expressed by all of those interviewed, whilst
bitterness and anger lurked just beneath the surface.
Anger appears to be a salient feature of the
chronic pain experience, but one which is frequently
suppressed (Fernandez and Turk, 1995). An important
reason for this appears to be that there is rarely anyone
at whom it can be directed. It is often too late
and too futile to accuse an unsympathetic employer, and
it would be regarded as unreasonable to express anger at
those who are ostensibly trying to help, whether they are
medical practitioners, lawyers or
those working in the benefits agencies.
It is recognised that those with persistent low back pain
exhibit high scores on neuroticism and psychological
distress (BenDebba et al., 1997) and it has long been
recognised that a significant proportion of
emotional disturbance associated with chronic pain is a
secondary effect (Mersky and Boyd, 1978). Given the types
of situation in which these chronic back pain patients
appeared to find themselves, through
no fault of their own, it seems surprising that more had
not succumbed to neurotic illness and depression. The
extracts given in this paper represent a fraction of the
detailed stories received during this study,
the majority of which are a sad indictment of the way
people are treated within the medical, social security
and legal systems in the UK. They are all the more
poignant in the light of recent knowledge that their
medical treatment was, from the outset, designed to
encourage passivity and chronicity. Macrae et al observed
that `the history of medicine is littered with medical
models that, in retrospect, stifled progress in
treatment... Today's major challenge is changing doctors'
perception of pain and methods of treatment, not just
amongst pain clinicians but in the wider medical
community' (Macrae et al., 1992; p. 290).
No claim is made that the sample in this study is
representative of all back pain sufferers who attend pain
clinics, although professionals working in the field will
doubtless be familiar with issues raised.
Nevertheless, the emergence of such strong commonalities
of negative experience `in the system' from chronic back
pain sufferers who shared nothing more in common than
seeking help from two different
pain clinics came as a shock to the authors. The findings
serve to reinforce situational explanations for the
development of negative attitudes and perceptions
commonly reported to be held by chronic back
pain patients. They have raised important communication
and management issues which need to be addressed by all
clinicians involved in the care, treatment and management
of patients with low back pain, as
well as policy-makers. Above all, these findings offer
strong support for further research into the development
of more effective, co-ordinated and humane approaches to
the management of people who have
acute and chronic back pain.

New member - For Joanne

2006-12-22 14:21:39

Good luck, Deb.

My only advice is to make sure you have someone who performs the surgery regularly. It's a complicated, elaborate procedure and you should have someone do it who has a track record. It was very reassuring when all the nurses and nurses aids that took care of me said that if they had to have spine surgery, they would want my surgeon, Paul Glazer, to be their surgeon.

I can say now, it's worth the ordeal to be rid of the pain.

Stay in touch.

All the best, Joanne

a Institute of Health Studies Reasusch article on pain. Part 1

2006-12-22 07:22:05

Just passing along a interesting article we received in the mail..

Part 1 of 2

Karl

Hello marg00!

2006-12-22 02:59:33

Welcome & Good morning marg00.
Everything you will need to access to is located on the main page.
To access any of egroups programs just click on a link on the main
site.
Most of the we have acquire are at on the link site, this to is on
the
main page.
If you have difficulty with any of it contact me I will text you
through.
This is a open form where the members have full control.
They can inquire or talk about anything.
This is still a relatively new group also.
But there is enough info. on the link page.
There is also a group at scolisos mailing list that is very good for
info. You might if you have time also subscribe to it.
Hope you find whatever is your looking for.
It helps to inquire and ask questions.
If you have any questions, you can either address me at egroups
(preferred)
or mail me directly at boxer57@bigplanet home/work email address.
Have a nice day and happy hunting.
Thanks for joining the life-with-scolisos.
Remember my help is just a post away.
Karl & Penny Coan
P.S. I almost forgot why don't you tell us some about youself please.
Thanks again!

Re: [Scoliosis-Medical] Linda update 082300

2006-12-21 22:32:12

Has she tried a muscle relaxant, such as Flexeril, or something like
Valium? I take the former for spasms.
Also try a heating pad with caster oil on a cotton pad or towel, low
setting. Or you can buy one of those microwave-able things instead of the
heating pad.
Ultrasound helped me with pain, and then ice afterwards, but accupuncture
was very painful (went to two people, same thing--it irritates the
muscles.) Accupressure and massage was the best for my pain (releases
endorphins, and relaxes the spasms.)
Hope something works for her! Tell her to hang in there!
Nancy in the East Bay

Recommended by: Gene &amp; Penny Coan

2006-12-21 12:52:33

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Linda update 082300

2006-12-21 09:54:24

Hello all,
It's been awhile for an update on Linda L. The recovery from the extension
surgery from T4 to C6 has been really slow and painful. Her May 99 surgery
fused her from S1 to T3, then 4 months later, the upper hooks came loose and
she evidenced an infection in the lumbar area. An Oct. 99, surgery was done
to clean the infection out and to cut off the top hooks and some of the
rods. The extension surgery was done in April 00 to correct the
hyper-kyphosis in the thoracic spine.
The recovery started out doing fairly well, then she began having spasms in
the neck and upper shoulders. The spasms have become now nearly continuous
and chronic. There is some relief lying down; but she can only tolerate
being on her back or up for a few hours at a time during the day. She is
sleeping pretty well now at night.
We finally were approved for a pain clinic at Stanford University. The two
doctors seeing new patients are fresh out of school so we are concerned
about the experience level. We'll give it a try.
The course of action is to adjust the Oxycontin levels so that there would
be no need for Percoset as breakthrough control. The Oxycontin is a slow
release Percoset. She is now taking three Oxycontin 3 times a day instead
of one 3 x day. They added Zanaflex in addition to her Baclofen as a muscle
relaxant. Linda had reactions to the Zanaflex including blood pressure
swings from 170/140 to 60/40. Pretty scary for a few days. She stopped
taking it and now has begun again using a slower introduction schedule.
The Oxycontin doesn't help with spasms or the hot/burning/prickly feelings
she has. The spasms are now chronic from neck to chest . Sleep at night
reduces the spasms; but first thing in the morning, she thinks, if I moves
at all, the spasms will return full force. The spasms begin shortly after
getting up. I bought a couple of 11" x 21" reusable cold packs. Laying on
a cold pack does help with the spasms some. The pain clinic also wants
Linda to have some PT, including message, ultrasound, heat/cold therapy, and
also suggested alternative treatments including acupuncture, bio-feedback,
and meditation. The spasms are very constrictive in the neck and chest.
She feels a heavy pressure on her chest and a feeling of ropes being
tightened around her neck and chest. The burning/prickly feelings cover her
full backside including head and legs. It's very uncomfortable and
unrelenting.
The pain clinic did a Lydocaine infusion test to see if this medication
would help with pain. The test was inconclusive. Linda was supposed to
exercise to cause pain while the I.V. infusion was in progress. She didn't
have much pain and normally doesn't in the morning. She was off the pain
meds for 6 hours prior to the test and still didn't have much pain. Later
in the day, as usual she had the pain as a result of using her upper body.
After two days of continuous spasm, the pain clinic prescribed the oral
Lydocaine (Mexiletine). She has to take Sucralfate 20 minutes before to
coat the stomach. Mexiletine needs to be taken with food. We'll find out
how effective the new pain control is in a few days.
We are not getting out much at all. Trips in the van for dr. visits and an
occasional dinner out is about it. The good news is the last visit to the
surgeon verified all the hardware is in place and fusing is progressing
well. Linda is very frustrated and discouraged lately with the lack of
progress. She can't get out and walk much. She wears the S.O.M.I. brace.
She is weaning off to a Philadelphia Collar. The collar is a semi-rigid
closed cell foam thing that goes from shoulder to under chin and head. She
can't look down or twist her neck much. She is weaning off the braces
pretty slowly because the spasms in her neck really get bad without support.
We are still managing to get along with a few conflicts here and there.
It's been a long 18 months. See brace pictures at
http://konakaffe.homestead.com/Braces_Linda.html Still looking forward to
finding a small RV with a floor level bed so we can do some traveling
safely. Hope to get out when the spasms are in control.
Warm regards,
George n Linda

Re: Swimming

2006-12-21 02:10:55

Hi Nutty,
Good to "see" you again, I missed your posts when you left the old
site.
I have Reynauds Syndrome, the hot water/cold water treatment is very
similar to a therapy used as an alternative treatment for that.
Best, Dianne S.

Re: Old hardware

2006-12-20 15:50:38

I remember a conversation with an orthopedic surgeon who once looked
at my sole remaining rod. He said; "well I could make a small cut
here, take a pair of pliers to the bottom and yank really hard.
Should either slide right out or maybe not". I didn't like the "or"
sound of things. Or it could be so embedded that it would cause all
sorts of nasties to happen. I figured if it wasn't removed in the
previous two surgeries when it was supposed to have been removed then
it probably was not going to budge with a yank on the bottom of it.I
just love orthopedic surgeons....:)What an amusing bunch. In another
conversation I was told that due to the bone density that had built
up around it there was no easy way of removing it without blasting it
out. Again I didn't like the sound of that one. So it remains.
The stainless steel rods are/were extremely strong. I actually tried
to bend just the rod part of the one that was removed. I tried a vice
and a pair of pliers. It sure was tough to bend it even a little. I
couldn't imagine the force it would take to bend one inside of me.
However I managed it in a car accident in England so it can be done.
And so it remains....
Paul

Just something to ponder.

2006-12-20 12:30:30

This was just sent to me. Author unknown.
The Quack
"He was standing one day at his door on Ludgate Hill, when a real
doctor of Physics passed, who
had learning and abilities, but whose modesty was the true cause of
his poverty.
'How comes it,' says he to the Quack 'that you without education,
without skill, without the
least knowledge of science, are enabled to live in the style you do?
You keep your townhouse,
your carriage, and your country house: whilst I, allowed to possess
some knowledge, have
neither, and can hardly pick up a subsistence.'
'Why, look ye,' said the Quack smiling, 'how many people do you think
have passed since you
asked me the question?'
'Why,' answered the Doctor, 'perhaps a hundred.'
'How many out of those hundred, think you possess common sense?'
'Possibly one,' answered the Doctor.
'Then,' said the Quack, 'that one comes to you; and I take care of
the
other ninety-nine.'"

Howdy all!

2006-12-20 03:54:36

If anyone wants to talk about anything at all I'm up and open to
suggestions.
Have a nice day!
Karl

New member - For Joanne

2006-12-19 19:51:20

Thanks for your information - yes I heard about the piece that was on Good Morning America about the spinal reconstruction on that young girl. I didn't see it but I read about it on line. Amazing! He truly is a gifted surgeon. I feel I am in good hands. It sounds like he did quite a job on you - fusing you above and below your original fusion.

All the best.

Lorrie

Old hardware

2006-12-19 18:15:27

Hi Paul:-)
I have my old hardware too. There are all kinds of
scrapes, kinks and dents in it. I'm not going to
elaborate on the extensive measures that surgeons
sometimes have to go through to pry these things out of
us. Remember though, that they have to be careful with
power tools and the like because of the heat-transfer
through metal factor. So often times, it's brute force
my friend. Also remember, when you have two materials
like bone and steel, most likely, the weaker one will
break first (path of least resistance). Often times
that's bone, espicially in us girls.
When I was a kid, I was interested in finding out how
strong the stainless steel rods must be and how much
force it would take to break one. Ever the scientist, I
took out the knife-sharpener steel (I figured the
materials were close enough to each other)and whaked it
on the kitchen counter--hard (it _sounded_ like a good
idea when I ran it through my head at the time). I broke
the counter. Really well I might add. I just wasn't
expecting that reaction AT ALL! I never said I was
always a smart scientist.
So, to any parents of kids with scoliosis, if they break
the kitchen counter with the Henkle knife sharpener, go
easy on them.
Allison

Scoliosis World : Bracing

2006-12-19 15:27:22

http://www.scoliosis-world.com/cat8.htm

Swimming

2006-12-19 02:24:54

Hola me again

My surgeon told me not to do breaststroke when swimming as it does strain the neck even more so on someone with a fusion, I do backstroke now or swim on my side and front crawl and I find this helps so much better.

Hydrotherapy
Water healing is one of the oldest, cheapest and safest methods for treating many common ailments. We know from personal experience that water is not just for cleansing, but for making us feel better. When you plop into that tub of hot water, after a strenuous day, you know you'll feel much better when you're done, for hot water relieves fatigue and prevents stiffness.
Ancient civilizations recognized the healing power of natural hot and cold springs. Back in the 4th century BC., the Greek physician Hippocrates prescribed bathing and drinking spring water for its therapeutic effects. The Romans built outstanding communal baths because they believed in the value of hot springs.
Water healing at home couldn't be simpler. Baths and showers are good for whole body treatments. In the whole body treatment, the water has to come to shoulder level. Then there are sitz baths, which are for treating only the bottom, hips, and lower abdomen. Then there is the foot bath, the vapor bath, and various others concentrating on specific parts of the body. Adding various healing herbs to the water increases the value of the bath.
Alternating hot and cold baths are good for treating hands and feet, with water as hot as you can stand it, in one bowl, ice water in the other. Put hands or feet in the hot water for one minute, then plunge into the cold for 20 seconds. Then back into hot and cold again until a total of 10 minutes have been spent doing this, ending with the plunge into the ice water. Beneficial for arthritic joints and tired, aching feet, and the alternating hot and cold stimulates circulation.
Remember that the application of heat is soothing, easing muscle tension and relieving pain. Heat also improves circulation by causing blood vessels to dilate. Cold can either be stimulating or soothing.
Water healing is helpful in maintaining metabolic function, and in making us feel much better, and is easily accomplished right in our own homes.

Perhaps some useless information there LOL

Nutty

"Teresa Rabun" here is some info. to stat with. Q and A About Scoliosis In Children and Adolescents

2006-12-18 22:37:54

[INLINE]

Here is some questions and answers you might have.

Have a nice day!!

Karl

Tersa

2006-12-18 16:23:49

Here is a link you might like.
<http://kidshealth.org/teen/health_problems/diseases/scoliosis.html

Cam

2006-12-18 13:24:45

Hi Cam

Thanks for the link I was not expecting that I will be adding your link to my group and website, I am happy with the link where you feel it best suits in your group.............easily pleased ;-)

Thanks for the compliments and I too am happy to meet some old friends from the other feisty jobby.

Nutty

Carole M

2006-12-18 04:28:06

Hi Carole

I have been racking my brain since we posted to each other and I have realised that we had met before, you had a pedicure LOL, how sad am I to recall such minor details lol.

Thanks for going to look at the site, it has taken some time to collect and gather all the info that is there and still working on it, especially the surgeon side; Llweyn and Nancy in Canada have been a great help there.

Glad you have a comfortable mattress, I do find that when we go away on holiday now though that I cannot sleep in anything other than my bed, a bad side to having a fab mattress!

Take care hun

Nutty

Prayer Wheel

2006-12-17 18:11:05

Prayer Wheel
Let's see the devil stop this one! Here's what the wheel is all about.
When you receive this, say a prayer for the person that sent it to
you....
That's all you have to do....There is nothing attached....
This is so powerful....Just send this to seven people and watch God's
answer to prayer work in your life. Do not stop the wheel, please....
Of all the free gifts we may receive, Prayer is the very best one.....
There are no costs, but wonderful rewards....
Let's continue praying for one another.
Amen.
A Prayer
Father, I ask you to bless my friends reading this right now.
I am asking You to minister to their spirit at this very moment.
Where there is pain, give them Your peace and mercy.
Where there is self doubting, release a renewed confidence in Your
ability to work through them.
Where there is tiredness, or exhaustion, I ask You to give them
understanding, patience, and strength as they learn submission to Your
leading.
Where there is spiritual stagnation, I ask You to renew them by
revealing Your nearness, and by drawing them into greater intimacy with
You.
Where there is fear, reveal Your love, and release to them Your courage.
Where there is a sin blocking them, reveal it, and break its hold over
my friend's life.
Bless their finances, give them greater vision, and raise up leaders,and
friends to support, and encourage them.
Give each of them discernment to recognize the evil forces around
them,and reveal to them the power they have in You to defeat it.
I ask You to do these things in Jesus' name.
In love, Your Friend
Passing this on to anyone you consider a friend will bless you both.
Passing this on to one not considered a friend is something Christ would
do.

CHOOSE HOW YOU START YOUR DAY TOMORROW..

2006-12-17 17:42:55

Ashley posted this and suggested that I send it to everyone love.

Re: Heating pads and cold

2006-12-17 10:44:38

Diane:
I use a heating pad all the time and never have had a problem with the rods
heating up. Also, I have never experienced the problem with cold that you
mentioned.
C.P.
On Tue, 22 Aug 2000 04:58:12 -0400, Scoliosis-Medical@egroups.com wrote:
What I was wondering though...and would like

my intro.

2006-12-17 05:07:51

Maybe I should have done this at the on set of this group.
I might suggest others do the same to some extent so everyone gets to
know a little about each other.
Anyway the reason I did not do this in the first place is I am not one
to make my problems known to others.
Back to my intro.
In 1966 I was the victim of a violent crime, I was shot in the stomach
while I was spending the night at a friends. I do believe that this is
the reason so many problems have come my way.
I had to deal with the many complications that has arisen from it and
they were not pretty.
I recouped enough to work but had to quit school to do so which is
something I regret now but had no choice at the time.
At work I had gotten to a high level of responsibility managing those
that work with me.
I have had back pains all my life but I never sought help guess my pride
or ego got in the way.
The Dr. bucks is what they called him said I would see some type of
improvement within a year at the most this was in 1984, I am still in a
very, very bad way,
I think what he did for me might have worked if he had not fumbled me in
the Operating Room that in my book will mess up any fusion and going
through one operation was enough though I went trough many when I was
shot.
Sense then I have basically been treated like a nonexistent person.
I had to get on SSD but what I had put into the system at the time when
I felt lucky enough to work ran out.
I am kind of glad this happen when your on SSD or have any type of
physical handy-cape/handycapable what ever you want to call it others
dismiss you call you a loser etc. and want you to jump through every
conceivable hoop imaginable very insulting.
Anyway after the pain got to be to much I sought help for the problem.
I was X-rayed, injected with radioactive die to check my bone density
underwent a milogram all the things medically necessary to find out what
the source of my pain was.
It was found I suffered with scolosis.spina bifida, narrowing of the
spin which has impinged on my nerves causing me pain every second of
every day and the list goes on I hurt just thinking about it.
While I was in the hospital the cries of children got to me I have
always wanted to try to help others.
I thought our sons being in the medical field might be a type of
solution and it has but that has pass and now he is living a very
respectable life (THANK GOD!) and married his wife is due date is in
dec.
Anyway I started this little group in the hope other people might find a
solution to their problem and hope others w/o scolosis might learn some
also.
I have found I suffered from PTSD when I was shot reading David Balwins
Trauma Pages has help me a lot
I feel there are a lot of people dealing with scolosis that realy need
insight to the stress they go through it will make the pain 10x greater
that it realy is and in some cases it might emlinate the surgery
altogether but I know there are people who can only function with the
surgery.
What I do now is care for my wife who has many problems herself she is
now having to deal with "PBC" a liver disorder among many other things.
Also there is my mom she is 80 years young now and has suffered with
diabetes sense she was in her 30's.
She to has many other problems also diabetes being the least of them.
Well I have said my piece, wish others would do the same.
I am open to question, comments or suggestions.
Karl Coan
mailto:coank5531@...
P.S. I am a little upset and in pain I can't sit at this puter to long,
please forgive any misspelling and there is also a lot more I wanted to
say but it has nothing to due with scolosis so bye for now and try to
have a nice day.

CT scan today, Santa Rosa Spine Center, etc.

2006-12-16 23:13:31

Well, I'm going to have a CT scan late this afternoon at UCSF. Everyone
hold good thoughts!
And the news last night showed a Spine Center in Santa Rosa, CA that does a
similar "rods and screws" repair to straighten spines. They had a young boy
who was so twisted he had trouble breathing. They showed his X-ray before
and afterward--I had no idea the screws were so large! They looked like
those Jumbo gum balls!
Anyway, I felt good that we now have this procedure for everyone with
crooked spines. His parents said it would make such a difference in his
life--he would be able to play outside without his Mom following him with
the Oxygen stuff, and he is now taller than he was.
Does anyone know how long this procedure has been around? I taped part of
the above, and showed it to my son---his first comment was, "And what
happens to you years from now?" Does anyone know? I guess sometimes the
screws break?
Thanks!
Nancy in the East Bay

Re: New member - For Joanne

2006-12-16 20:43:48

I was previously fused from T9 to L4. I'm now fused to the sacrum
and am also fused above. I had my original surgery in 1967 and am
now 52.
By the way, saw Dr. Boachie on Good Morning America about a month
ago. He did an amazing spinal reconstruction for a young girl whose
spine had curved forward to a 90 degree angle when she was a small
child. Did you see the piece?

Re: [Scoliosis-Medical] Re:Nancy in the East Bay's new spa...

2006-12-16 14:10:39

Sure.
It costs about $4,000, which included delivery and setup. I have to pay an
electrician $500 more to put in a dedicated outlet for it.
I have a deck outside--actually an upper and a lower deck (2-story house,
built in 1929, decks added by a previous owner.) They said the upper deck
would not support the weight, so I had contractors put in a concrete pad on
the ground, and cut a hole in the lower deck for the tub. It will be right
outside my service porch/kitchen door.
Yes, it comes with a lid. I also thought I had to have the kind that goes
in a 110 wiring house (since mine is so old) but the electrician said it
had been upgraded to 220. He told me (which the spa sellers did not!) that
the ones for 110 take a long time to heat (hours, I think he said!). So I'm
glad I had 220.
We'll see how much it costs to heat! I know the sauna takes a lot.
Fortunately, our Pacific Gas and Electric lets you pay the same amount each
month all year (since we are in California, we don't have snowy winters,
and we don't have air conditioning, except for the fog and cold air that
comes in from San Francisco Bay!), so that should help my budget!
It's coming the 29th, so I'll let everyone know how it feels afterwards!
:-)
I never use the steam rooms in health clubs-there are always a bunch of
sweaty men and it smells, too!
Nancy in the East Bay

Re: Welcome to life-with-scoliosis

2006-12-16 01:19:44

Hi! Im a 15/f and have been wearing a boston back brace a

RE: [Flatback_Revised] New member - For Joanne

2006-12-15 21:20:39

Joanne - I very much enjoyed reading your surgery story. I'm planning on having revision surgery with Dr. Boachie on November 8^th, 2005. Like you I went through a number of diagnoses and scares by surgeons until I did enough research and found a surgeon I'm comfortable with. I hope you don't mind me asking - but what exactly did you have fused and how old are you? My original fusion was in 1973 - fused from T6-L2. Dr. Boachie is going to fuse me from L2-L5. Leaving the L5/S1 still free. Are you fused to the sacrum?

Lorrie

Adult Scoliosis

2006-12-15 14:41:34

Hello everybody,
I wish to know if the members of this group are all adults and, if
so,
how could I become member. Which are the conditions. Do you all
speak
english? Do someone speak spanish?
M.A.

Re:Nancy in the East Bay's new spa...

2006-12-15 11:44:29

Hi Nancy B,
would you mind telling me approx what the cost of your hot tub ran? Do tell
us how you like it. I had one many years ago and found getting to it in the
cold/wet weather was too hard and then getting out of it to come back inside
in bad weather was equally as difficult. I ended up not using it except
summer and then it became just a "pool" because I didn't want to heat it in
hot weather. So my purpose was defeated, but you will probably have better
results with these newer models with the covers. (mine did not have a lid so
it was wasteful to heat it for a short time).
Paul, do you know if a sauna is helpful? I've always wondered if steam or
heat was better. At my gym the steam room smells of mold/mildew yet I can't
see any, but I'm glad to hear that you had good results with steam.
Jolene in Central Calif

Re: New member

2006-12-15 08:10:58

Joanne,
Hello, and thanks so much for re-introducing yourself. It helps so
much to see it all as one united "piece".
You may know that I am just 2-3 weeks ahead of you in the revision
game..I had the two stage surgery with Dr Rand Feb 9th/16th at NEBH.
We will have to compare notes a little closer!
I was lucky that everything went as scheduled/planned and I was in
the hospital 13 LONG days...but also returned to my life fairly
quickly. I must say I was surprised that you were allowed to drive
after a week though...wow..you must not live in the city.
I think Dr Rands concern with driving was two part: difficulty in
looking about...risk of twisting...and the chances of being in an
accident before the fusion is solid. It actually still worries me a
little...I live on Nantucket and the crazy NY drivers are
here...Yikes!
I agree with you that one thing necessary to undergo this surgery is
the clear understanding that you are the best advocate for yourself.
And I doubt you can undergo this surgery with any degree of calm
unless you have gotten a few opinions and feel that you have made
the right choice of doctor/hospital.
It is a scary thing. To be completely honest, my logical self knew I
had made the right choice for me....but I know I did not make the
emotional choice until Dr Rand signed my back....thankfully I never
regretted my decisions.
I am glad to hear you are in the area...I have had the chance to
make several trips to Boston where I met Ann, Carolyn (not hearing
much from her these days as she is taking the Bar Exams this month-
also a Glazer patient) and Dianne....in fact they all came and spent
time with me while I was incarcerated! Hopefully we can get together
this fall. I know from the Chat last night that Theresa from Houson
is going to be nearby in the coming weeks and I think there is a
tentative lunch plan brewing...sadly I can not attend...but stay
tuned!
Again, thanks for sharing your story...Cam

Good Luck!

2006-12-14 22:02:54

Hey there,
I want to tell you about a great site on the Web called

Re: [Scoliosis-Medical] weird back pain / itch

2006-12-14 17:04:52

Hi David...
It's probably nothing, but you should check with your surgeon. Late
onset infection is a possibility.
Regards,
Linda

Spas/Tubs

2006-12-14 10:53:18

Ooops, I've already purchased one of the 4-6 people spas from SpaLand in
Richmond. They have the tubs on display, too.
I'll let everyone know how it turns out. They deliver on the 29th.
However, this sounds like a great bathtub. Does it actually heat the
water, or just move it around?
Thanks!
Nancy in the East Bay

New member

2006-12-14 07:34:35

I used the former group, FeistyFlatbacks, before making my decision
to move ahead with revision surgery this past March, but some of you
may not know or remember me so, to re-introduce myself, I will tell
you my story and try to keep it as brief as possible.
Like a number of you, I was operated on in the 60's for scoliosis
and for around 20 years was without incident. I began, sometime in
the late 80's to develop lower back pain and to notice I was no
longer standing up as straight as I used to.
At that time I was able to get an appointment with one of my former
surgeon's from Children's, then at U. Mass Medical Ctr. With
steroids and physical therapy he was able to eliminate the pain I
was having and I went on my merry way. Like some of you, I kept
complaining to my doctors over the subsequent years that I thought
something was going wrong, but they either couldn't see it or didn't
know who could help me.
Two years ago I was referred to Dr. Glazer, and although he
acknowledged he was seeing former scoliosis patients who were
running into difficulty, he never provided any detail, said I was
not a candidate for surgery, should continue doing as I had been
and to call him if necessary. My primary care who referred me to
him seemed to have no idea at the time Dr. Glazer specialized in
scoliosis revision surgery. So when I ran into trouble a
year ago last March I did not think to call Dr. Glazer at first
because he had led me to believe a mere 2 yrs before that my
scoliosis surgery was not a problem, so I assumed that that was
still the case.
After 6 months of going to other doctors for the pain, all of whom
were reluctant to recommend me to a surgeon, I took it upon myself
to finally call Dr. Glazer's office and ask for an appointment.
He took one look at my x-rays, threw a lot of madical mumbo jumbo at
me (scaring the you-know-what out of me), announced I would need
revision surgery and told me to call when I had made up my mind.
Needless-to-say, I was frightened by the news and not to happy with
his abruptness. After that appointment, with a medical dictionary
in hand, I went on the Internet to do some research.
I've learned over the years not to react to my first encounter with
physicians, so once I had a little more knowledge in hand, I sent a
letter to Dr. Glazer with questions about his diagnosis. He called
and said I had misunderstood a number of things and suggested I come
back to see him. On the second appointment he sat down with me the
way I wish he had done in the first place and took all the time I
needed to go over what the situation was and to answer all my
questions. Why he didn't do that the first time, I will never know,
but you never know what kind of day a surgeon is having.
Regardless, in the 2nd appointment I found him very open,
understanding and reassuring.
I then made an appointment with Dr. Rand for a second opinion. Dr.
Rand and Priscilla gave me far more time and information in my
initial appointment. Although Dr. Rand gave me the same diagnosis,
he had a slightly different approach to the surgery. In the end I
decided I was more comfortable with Dr. Glazer's approach and with
having the surgery done at the Beth Israel Deaconess.
I went in for my first surgery on March 1st this year and wound up
having 3 surgeries instead of 2 due to issues related to bone
density. I was in the hospital for 2 weeks instead of 7 to 10 days,
and due to the extra surgery was unable to get up on my feet quick
enough to avoid going to rehab where I spent another 2 weeks
(definitely not a pleasant experience).
Although this delayed the start of my recovery, I'm happy to say
that as soon as I got home I progressed quickly and caught up. I
was taking care of myself within a few days, and every day since
then has gotten better than the day before. I was driving within a
week after getting home, back to work part-time by the middle of
April and haven't had to take any pain medication, other than an
occasional Tylanol, since leaving rehab.
I must admit, this has surprised even Dr. Glazer, but I told him I
was a fast healer, he just didn't believe it.
Although, in the end, everything seems to have turned out well, I
must tell you all that my surgeries and stay in the hospital were
not without their share of difficulties. I am fortunate to have a
lot of family living in the area and I taxed them to the limit.
Their presence helped me to run interference whenever necessary, and
there were many times it was necessary, in spite of the fantastic
care. My one piece of advice to remember is that no one knows your
body better than you and you have to have faith in your ability to
sometimes make better decisions than the doctors and nurses. They
cannot administer any medical care unless you agree to it, and you
can and should say no whenever you are in doubt about anything.
In the end I feel I picked the right surgeon to do the job. I have
had very little need to speak with him since I got home, but he has
let me know more than once, when I have gone in for follow-up xrays,
that he is available when and if I need him. Still, communication
is difficult, so I make an effort to keep the lines of communication
open by not waiting for problems to arise to let him know how I am
doing. I drop him a line now and then.
My greatest difficulty now is being patient and allowing my body to
heal without pushing it too hard. I had a lot of bouts with
depression in the beginning, but I think a lot of it was due to the
medication which hadn't quite left my body. I still get tired easily
and I wonder if I will ever be able to do all the things I want to
do, but I comfort myself with the fact that at least I'm not in
severe pain anymore and that's a beautiful thing.
Hope I haven't gone on too long. Wish all of you the best of luck
and a positive outcome as you tackle this problem. Please let me
know if I can be of any help. Joanne

Re: Hot Tubs and Spas

2006-12-14 05:28:24

As a personal preference I use a steam room when I can. I find a few
minutes in the steam takes away all the aching pain that I get from
cold damp weather. I think the reverse happens in a warm damp area. I
can't get comfortable in a hot tub though.
The funny thing is that my physiotherapist actually told me to go sit
in the steam room rather than the hot tub. He said it works on a lot
of his patients.
I have considered seriously getting one installed in my basement.
Paul

skol lax.

2006-12-13 13:23:55

Are you all right?
Just concerned........
Karl

Hot Tubs and Spas

2006-12-13 10:46:01

I thought the threads on Hot Tubs and Spas were pretty interesting. Seems most
people get a lot of benefit from them.
I had just the opposite happen. I am fused T1-Sacrum with, at the time, 3
Harrington rods. My sister had a Hot Tub with jets. I was visiting them and we
all sat in the Tub. After a half hour or so, I could hardly get out. I felt
like every muscle in my back was "torn". I guess they were simply really
relaxed, but it was VERY uncomfortable. Even the next day, my lower back felt
very unstable. It was several days before I felt "normal" again. I don't know
if it had anything to do with the fact that 2 of the rods were no longer hooked
into the clips, but I certainly didn't expect that response to what was supposed
to make me feel really good.
That was about 6 years ago, and I haven't been in a Hot Tub since. Those two
rods have been removed, and my sister still has a Tub, but I'm not sure I'll
ever get in it again.
.............................................................
voted #1 search engine! http://www.iwon.com why wouldn't you?
.............................................................

Just checking.

2006-12-13 04:50:41

Skol Lax, saw you might be talking with Yokky good just wandering if you have gotten the info. you wanted...

The group Scoliosis Mailing List is a great place to get info.Richard has put together a very nice site..

There are some others just don't want to you getting any wrong stuff.or sending you to info all at once most of it is hard to deal with anyway and I know you mention your afraid of the surgery.

P.S. If your looking for a way to make some money and can get out of the house like me anyway Big Planet the telecommunications company which is owned by NuWays has a great thing going and there are the # 2 ISP network right now was #1 for a while..
If your interested post me we will send you a link OK?

Good Luck.
Take care..
And have a nice day.
Karl & Penny Coan
mailto:coank5531@...

Water Therapy

2006-12-12 19:28:44

Cam,

I believe that you live in my favorite place! Doesn't the ocean help, at least in this weather? Salt helps with buoyancy, right?

Carole (green with jealousy)

Re: Cam &amp; Mary

2006-12-12 17:26:48

Hi Nutty and welcome.
Thanks for the info. I took the liberty of putting your link in
the "links" section under Other groups....hope that feels right to
you. If not let me know.
You look like you have a lot of good stuff going on over there. I am
happy to hear from you again.
Take Care, Cam

Re: Spas/Tubs

2006-12-12 13:42:39

I got a bathtub from a place called "Tubz" in Fremont, CA. I think they
supply to lots of showrooms. It's a family owned business, and the woman who
designed it (an owner) has back problems herself (I think she has a very long
fusion, tho not scolio related). It is a whirlpool bathtub with jets, and
the most comfortable I've sat in. I am fused, with rod, from T4-T12. It was
also small enough to fit in my tiny bathroom, in a house with cement slab
flooring (so it is quite workable). It has been a god send for me. You
might want to call Tubz (they are listed) and ask for any distributors in
your area of their "Santa Clara" model. (<--- in a strange twist of fate,
the woman lives in Santa Clara like me, hence the name). It might be worth a
look-see. The nice thing about this particular place was that their
warehouse type showroom was set up so that one could actually sit in a tub
and gauge how it felt.
It wasn't the cheapest tub, but it was very much worth it & nice to know a
kindred spirit (the woman) was able to point out things for a back-centric
person of our ilk....Nancy in Santa Clara:
<< I am thinking of investing in a spa. Does anyone have one, and does it
help?

skol lax

2006-12-12 06:54:25

just wandering if you found what your looking for?
Karl Coan

weird back pain / itch

2006-12-12 01:27:37

Hello everyone,
something strange has just started to happen to me. If there are any
doctors on the list or anyone who has had this same problem, i would like
some answers.
I had my back surgery done last December 14th.. so it has been over eight
months ago. Here within the past couple of days i have been having
increased pain and this terrible itch right behind the scar. There is not
much i can do to relieve this itch because the skin is totally numb. Is it
possible for the place of incision to become infected 8 months later? Or is
this just natural? The only thing that has changed in my lifestyle is I
moved and have been sleeping on a different bed. I have been waking up real
sore.. i don't think this bed is too comfortable.
please reply with advice or if you have had this same problem.
thanks,
David

It's a date...Chat every Wednesday!

2006-12-11 17:57:42

After all the fun we had last night it seems that we should make a
live chat a weekly event...something to look forward to on "hump day".
Of course it is just an extra...and members can chat anytime they want
to without anything official...but I think a designated night will
remind us all to log in and say hello.
My thinking is that the live chat provides a little more of that human
contact that is lacking, to a large degree, in typical cyber
interactions. That can only be good right?
It seems that I still need more practice on the private
messages...which allows two chatters to go "off-line" so it is a
little less confusing....but hey, without the confusion it wouldn't
have been soooooooo funny! I guess I will find a young chatter and
find out what I am doing wrong...I am sure any teenager can advise!
Talk to you soon and see you next wednesday, Cam

Re: [life-with-scoliosis] surgery

2006-12-11 05:48:07

Hello skol lax ;

Here is a link that will tell you everything you want to know just about.
You will need to subscribe to there group, everything there pertains to per. and post op. surgery and the new treatments for scholiasts etc.
* scoliosis mailing list

skol lax being scared of the procedure is a very normal reaction, in my case I have taken it to GOD.
Between him and the Dr.'s this is where you will find your strength, only within yourself
will you ever find the strength needed to endure this. Not in anything of this earth.
And I would like to say I am no preacher though many are in my family. I do understand how one can be effected in a bad way by it.

Believe in Him, yourself and the Dr., with today's technology there is not allot to be afraid of, everything usually turns out OK! Anything is possible.

Even though myself like many other have different opinions about it.

Sorry, you hit one of my buttons, fear is something I have lived in for many years.
I was shot in the stomach on my 16th birthday felt I had gotten over that. I was Wrong!
Around my 32nd B/D it was found I had a spinal disorder among many other things.
Anyway we hope you find the info. you seek and try to have fun doing it, the web is a wonderful thing if used right..

Hey if anytime you need to vent or just hang out you have the URL.

Your opinions are always welcome here.

Good luck!!!
Karl, Penny. Lois & Kacey dog...

surgery

2006-12-11 02:51:36

Hi all,I went to my specialist on Friday and he is talking about
surgery. He is concerned that in time my ribs may start touching my
hips and this would be bad. I am not ashamed to admit I am terrified
of the surgery and wanted to talk to someone who has been through it.
I am 26 and have alot of questions about this, please someone help.

Water Therapy

2006-12-10 20:25:56

Cam, Sharon,

I, too, am a swimmer, and have always wanted one of those pools. Only recently have I learned how expensive they are. I even have a framed prescription from my doctor ordering me a pool!

Carole

Hello everyone.

2006-12-10 15:22:38

Just wanted to know if anyone feels like me, a "weather vein"
before,
during
and after it rains.
It use to be much worse before I started taking Zoloft.
Karl

Re: [life-with-scoliosis] chronic back pain

2006-12-10 10:48:56

Miss.L.Jones;

I wish I could give you some comforting advice, I had surgery in 85 and have suffered with chronic pain every sense.
I am not into Yoga or mind stuff but sometimes not concentrating on the pain your having can help though it seems impossible to do at times.
Water aerobics is great, it is easy on the back you might also check into depression.
I started taking Zoloft about 6 months ago and it has help me a lot with my pain a other stuff.
Everyone who suffers with chronic pain so look into depression.
Please do not take my talking about depression wrong, I did and I had a lot of trouble with seeking treatment I was worried what otters would think and the like.
But it gave me back so of my motion as well help with the pain I have suffered with for so many years.
Heating pad also can bring relief if use correctly, other wise it will cook your insides.

Hope you find relief.
Have a good one and think nice thoughts
Karl Coan

Update on appt. with Dr. Hu

2006-12-10 09:22:51