I was scheduled to go to craig and get surgery. They had looked at my mri, gave
me a surgery date and all. Then they called and said they couldn't take my
united healthcare insurance. I was devastated, it made my so upset.
Ron
On Tuesday, January 24, 2017 2:59 PM, Lori Michaelson
<[email protected]> wrote:
I meant to say at the end of my recent post that 'Again, posttraumatic
syringomyelia or aggravated syrinx makes quadriplegia a walk in the park.'
On Tue, Jan 24, 2017 at 12:47 PM, Lori Michaelson <[email protected]>
wrote:
That is exactly how I found out that I had a syrinx (posttraumatic
syringomyelia) - I had never heard about it before 1994 and after 4 1/2 years
of weird symptoms (nothing with my back - pain or anything) and then after my
pupil dilated... I said to myself "That's it... something is WRONG." So I got
right on the phone with Craig hospital in 1994 and a neurosurgeon called me
back with my inquiry telling me to have an MRI done because it sounded like I
had Syringomyelia."
All I knew was that I had never heard of it before and therefore I was scared
to death. I didn't have the resources back then to travel all the way to Denver
from the Northeast so I had the MRI done by my physiatrist (who confirmed the
neurosurgeon's guess at Craig Hospital at what I had). Therefore I got 3
different opinions in 3 entirely different areas in New York state and chose
one.
In one way it it doesn't seem nearly 23 years ago with my diagnosis but I did
not get operated on until 1995. That took care of my original symptoms but
then, 2 years later, pain started slowly sliding in from my lower neck all the
way down my spine and around my right shoulder blade (where my syringo pleural
shunt is). My follow-up MRIs showed for several years that the shunt was still
draining despite the pain has getting worse.
I had one primary care physician make a pretty good educated guess as to why
the pain slowly began spreading and that was because he said that the shunt was
probably woven through quite a bit of nerve and muscle which makes sense. My
pain under my right shoulder blade and the entire area covers ALOT of muscle
and nerve. The guests at the muscle is right because if I overuse my right
arm... my pain gets much worse. In fact, I used to use my fist or the eraser
end of a pencil to type for many years and avoided going to use voice
recognition software but after I did... I never went back. I began to use
Dragon around 2003.
Now the pain is tolerable as long as I don't get moved wrong or as long as a
caregiver does not accidentally press into that area. For some reason, it just
hurts for days or weeks or longer when a caregiver accidentally moves me wrong
or presses into that area too hard.
My worst experience was in the middle of December 2016 (last month) when I was
getting moved up in bed and felt my pain area being pressed into quiet hard
even though I was not doing anything different and it has not only triggered
pain but spasms.
Again, posttraumatic syringomyelia or an aggravated syrinx makes syringomyelia
a walk in the park.
On Mon, Jan 23, 2017 at 10:50 PM, Robert Vogel <[email protected]> wrote:
Hi Bobbie and all,
There has already been much excellent information shard about about
Syringomelia (Syrinx) on this site including (I forgot the person that
mentioned Dr. Scott Falci Craig hospital (as well as Dr. Barth Green at the
Miami Project) as being the top peoplein the field in terms of Syrinx and SCI.
Dr. Falci and Charolette (sp?)at Craig Neurosurgery are very good at answering
questions and providing information about Syrinx, based on symptoms etc. over
the phone—Dr. Falci has performed well over 1000 Syrinx surgeries and helps you
figure out, via phone based on symptoms, statistics, and his experience (he has
operated on well over people with Syrinx’s) when one needs treatment (surgery)
vs. when to leave it alone.
Here is a link to an article I wrote for New Mobility magazine about SCI and
Syrinx, hope the information is helpful.http://www.newmobility.com/201
1/01/paramedic-syrinx-and-pain /
Bob Vogel
On Jan 23, 2017, at 6:26 PM, Bobbie Humphreys <[email protected]>
wrote:
It is well over 50% of spinal cord injury who develop a syrinx, some with in a
month of injury some many years and then others ... never.Bobbie
"You must fail in order to succeed"
On Jan 22, 2017, at 8:02 PM, Lori Michaelson <[email protected]> wrote:
Yes, I have known for years that 3 to 4% of persons with traumatic spinal cord
injuries get posttraumatic syndrome syringomyelia and I fell into that 3% with
severe symptoms whereby I had to quit work.
Those "others" are able-bodied people who developed a form of syringomyelia
called Chiari Malformation. Even though vastly different they have the same
type of "syrinx."
It is similar in that a Chiari Malformation it is an abnormal collection of CSF
[cerebral spinal fluid] in the spinal cord (syrinx) and is also confirmed by
cine MRI and causes severe or worsening symptoms.
~Lori
On Fri, Jan 20, 2017 at 10:45 PM, Aaron Mann <[email protected]> wrote:
More info: "Approximately 3-4% of persons with traumatic SCI develop clinically
symptomatic PTS. A larger percentage of persons have clinically silent syrinx
cavities diagnosed by imaging techniques."
http://emedicine.medscape.com/ article/322348-overview
--
"Petting, scratching and cuddling a dog could be soothing to the mind and heart
and deep meditation and almost as good for the soul as prayer." ~Dean Koontz
--
"Petting, scratching and cuddling a dog could be soothing to the mind and heart
and deep meditation and almost as good for the soul as prayer." ~Dean Koontz
--
"Petting, scratching and cuddling a dog could be soothing to the mind and heart
and deep meditation and almost as good for the soul as prayer." ~Dean Koontz
