Spasmodic Torticollis
MRP
having Dystonia. And most importantly, should I have these Bo-Tox shots?
Apparently there is no blood work or anything else that can diagnose this
condition. I just don't feel right about having these shots without a
positive diagnosis. In addition I have heard some things about this
particular physician which apparently had lead many to believe that the Doc
may be more interested in the size of their bank account over what's best
for the patient. I have heard that it is best to be hooked to an EMG either
before or during the injection of this poison. And apparently this is never
done. So as a result I have done nothing. But this condition is not
getting any better and there does not seem to be anyway to get a positive
diagnosis for my condition. From a failed anterior fusion, to cervical
kyphosis, to the possibility of Dystonia. One would think, there would be
some place that ought to know what has gone wrong with my neck and is it
fixable. I have one vertebrae which I would guess is C-7 which is the size
of an egg right at the base of the back of my neck. I have seen
approximately 6 different physicians and so far I either get refused for any
type of treatment or, what seem like guesses. Myofascial syndrome, cervical
radiculopathy, cervical kyphosis with immediate surgery needed, Dystonia.
Needless to say this has destroyed my life, both socially and physically.
Symptoms are basically these: Back of the neck is rock hard, sides of the
neck are starting to look sunken in like a deformity of the side muscles.
And my ability to hold my head up is becoming increasingly difficult and to
just really pull it up is painful. So I thought I would see if I could
connect with someone that I had missed last time who can offer any advice.
Thanks and Good Luck to us All!
M. Rex Pender
mr...@cyberramp.net
susan givens
Get the Botox injections. The needle, which very delicate, is attached to an
eletronic monitor. When the physcian inserts the needle, the monitor picks up
muscle activity with sound. As he probes the muscle with the needle, both you
and he can hear the "storms" of muscle activity. That is where the Botox is
injected.
I have been having these treatments since 1996. It is a progressive return to
health. For me, any improvement is an encouragement to keep going forward. Am
just beginning some gentle yoga exercises. (My husband, at age 60, recently
climbed Mt. Acongagua in Argentina. That is a 23,000 ft mt. He is a "hard"
example to live with, but I am working the parts of my body that are healthy.)
Keep going and keep me posted.
Susan
Su...@webtv.net
the botox. The doctor you mention does not sound like he uses this
machine.
Some have units, as Susan mentioned, that the botox needle fits into the
EMG needle..Others use the EMG and then put the shots in after. Some do
not use the EMG at all and just put it where they think it goes. Some ,
at least one, is called "Dart Board"
My head has fallen down since my first botox "a la dartboard" and that
was 6 years ago.
I am just a fellow sufferer who would like to see us all get the best of
care...Sue
Anna_PA
I am going, this week, for my Botox injections, on March 5th. I am from PA
and do go to a teaching hospital, called Johns Hopkins University, in
Baltimore MD. After a year of running from doctor to doctor, in 1991, this
group of neurologists, diagnosed my Spasmodic Torticollis (ST) and started
me on Klonopin, which helped the pain. It did not correct the abnormal
posture of my neck and head. A few months later, they started me on Botox,
which was a miracle drug for me. On the third day, I was back to 'normal'.
I could hardly believe it. I now had control of my muscles and they were
not rock hard anymore. I returned to work and put in a full day, plus did
activities in the evenings. :) I have ST in both sides of my neck. I know
the Botox does not work for everybody and it is very expensive, but it is
well worth the try. The best of luck to you, if you decide to go this
route. The correct doctor to administer this Botox is well worth searching
out.
For the record, my neurologist does not use an EMG, which he said was not
necessary. Since I got such wonderful results, I have to agree with him and
I do trust him. The past few months my neck is giving me trouble again, but
I have had some big changes in my life, so I am hoping this is the reason.
Keep in touch, Rex, and let me know how you are doing. You may email me if
you would like to talk some more. I will help as much as I can.
Lots of luck,
An ST friend in PA.........Anna
Carole Davis
This is all news to me about EMGs and special machines. I had what you call
a "Dart Board" every place I went to. In fact the first time I had Botox,
the Doctor held a book in one hand and the needle in the other. It was his
first time too. The funny thing was it was the only time it worked, albeit
it took 4 weeks and I was into a breakdown before I noticed. I had the
injections after that for a couple of years, it helped with some of the pain
but not the spasms.
Now I'm lucky to get an appointment with the Disorder Clinic every six
months. More often than not, if they are busy, the'll cancel me in favour
of someone they can help. I have not seen anyone from there for nearly 14
months. Still I've found a good symathetic Doctor that I can talk to, and
that helps, so it's not all doom and gloom.
Carole
Su...@webtv.net wrote in message
<9380-36D...@newsd-164.iap.bryant.webtv.net>...
Gene
<carole...@zen.co.uk> wrote:
>Wow,
>This is all news to me about EMGs and special machines. I had what you call
>a "Dart Board" every place I went to.
>Carole
A young lady with S.T., who lives not too far from
our home, mentioned that she was having botox injections
done locally by an inexperienced neurologist but gave
up on it after a while. Botox had no effect.
Her sister talked her into making an appointment
with a well known neurologist in Toronto, one who has
experience in the administering of botox injections.
It made the world of difference! She is sold on this
treatment, so much so that she travels 2000 miles
every six months to this doctor's office for botoxin.
Regards,
Gene
GARY
I second this.
gary:
GARY
important to control this . I was very lucky in comparison to some on this group
as my first nero. hit it right away .I find it hard when I hear of those like
you .I do admire your ability to even look at a monitor. I at one time would not
even be able to do so let alone type a response . I find admiration in your
determination to type to this group .It is my hope and wish that some day this
will turn around for you .
gary:
never give up as you never know what tomorrow will bring .
Gene
The following is a missive I posted today in the NSTA Bulletin Board.
A meeting place for Quacks and Ducks and my last post there.
What works for one, may not work for another. It is something
that, according to Dr. Tsui, a prominent neurologist,is a fact.
I'd say a paradox.
It's no secret that S.T. may be hereditary. It may also be caused by a
lack of oxygen at birth, accident, or neuroleptics. It does go into
remission on its own. I am in remission. Remission doesn't mean cure
but my quality of life is much better.
I understand what you mean when you say: "I am opened to trying
anything as long as I can feel it is safe." I hope, however, it's not
anything that you have to eat or drink. As you know, S.T. is the
result of a very complicated chemical imbalance in the brain. There is
nothing in the universe as complicated as the human brain. To take
unproven drugs with the hope of improving one's situation is playing
Russian roulette and with you as the loser. Dr. Breggin mentioned
that even the taking of neuroleptics is dangerous. The DMRF has it on
its list of drugs to avoid and to be careful with. Would you
deliberately send toxic chemicals into to the atmosphere? No. But we
do it to ourselves and our brains are far more complicated and
delicate. The basal ganglia once damaged (scarred), as I understand
it, cannot be repaired and that's the problem with us. It is why we
have Dystonia and the reason I am not willing to try just anything.
Regards,
Gene
Gene
>
>The following is a missive I posted today in the NSTA Bulletin Board.
>A meeting place for Quacks and Ducks and my last post there.
>
From a former researcher and assistant teacher for the Department
of Cell Biology and Neuroanatomy at the University of Minnesota
to Dr. Stephen Barrett, M.D. of Quackwatch:
"It is amazing to me that at a cultural high point in terms of
scientific and technical knowledge - knowledge which continues to grow
at an exponential rate - that this kind of fraud, mysticism and just
plain bad thinking can be sold so easily! What ever happened to the
ideals of the Age of Enlightenment where Reason and it's application
to the human condition were looked upon as having the greatest
potential for the advancement of Mankind? The older I get, the more
saddened I am to see the things such as you expose taking place. Gain
strength from your detractors -- and from your supporters, one of
which I am delighted to call myself! Keep up your fine work as it is
sorely needed in today's world!"
GARY
very closely to those like GENE .I must make my own life ,but if I'm not
willing to listen to those with more experience and pain then I am totally
deaf
On the other side advances have been made , new knowledge available ,
and new attitudes abundant , new ideas to discuss .
In the end it is best to listen to one another .
THE MOST COMPLICATED COMPUTER EVER DESIGNED ; THE HUMAN BEING .
gary:
Gene wrote:
GARY
we can ,in whatever way possible .
gary:
stclin...@gmail.com
Abbie Brown