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| About Us |
Kathleen Grigg Founder of Chiari Connection International Support/Information Group
We have two sons, ages 19 and 22. I was first diagnosed with chiari at the age of 34, I had a decompression surgery
in 1990, then one month later developed hydrocephalus and had a VA shunt placed. I was left with 24/7 headaches that were
diagnosed as migraines, and was told my Chiari was cured, and to get on with my life. I did my best to do that but after a
nasty fall in 1997 symptoms returned and nothing would help resolve the pain. Local doctors still insisted that I was fine.
When I asked for a second opinion they referred me to Dr. Milhorat in Brooklyn, NY. I've since had a second decompression,
craniocervical fusions, shunt revisions, and tethered cord surgery.
Both of our boys have Chiari 0 and Ehlers Danlos syndrome. Both have more symptoms from the EDS, and hopefully with some
life style changes they can avoid complications from both CM and EDS.
I've been a part of on line support groups since 1997. Sally and I decided to start a new support group with a web site that
has a twist. We have asked Chiari and EDS experts to reply to questions the group presents. Several neurosurgeons have offered
to help at this point.
At this time we have quite a few moderators: Kathy D.,
Billy, who is also our Webmaster, Michelle, and Virginia.
Our parent's group moderators are Lisa and Charnel, and
our kid's group moderator is Jessica. We all have experience
with Chiari and it has changed all of our lives. We've
all decided it is a lonely world out there not knowing
others with chiari. Having support from around the world
is vital.
We all hope that you will take advantage of the knowledge
on our web site and the friendship that our support group
has to offer.
Contact Me Feel free to contact me at any time.
Billy Rowe, Moderator of Chiari Connection International Support/Information Group and Webmaster
I am originally from Maryland but now live in Charlotte, NC. I have Chiari and TCS having two surgeries in less than one year.
I was decompressed at TCI in October 2005 and had TCS surgery in August of 2006. My symptoms started as a child but was I not
diagnosed until 2002 at the age of 23. After being diagnosed I searched around to gain some knowledge of Chiari. After doing so,
I decided to go to TCI for an evaluation. The TCI staff tried everything, other than surgery, to alleviate my symptoms. However,
there efforts were not successful. I then became I candidate for surgery. After being decompressed a lot of my symptoms went away
other than headaches that are a lot fewer than before surgery, balance, and mostly leg pain. I then went back to TCI and they found
I had TCS. The surgery was preformed but had no relief of my leg pain.
I am happy to be a part of the CCI community and urge you to browse through our vast amount of useful information.
Contact Me Feel free to contact me anytime.
Kathy Tuttle-Donohoe, Moderator of Chiari Connection International Support/Information Group
My name is Kathy Donohoe, and I live part time in WA and AZ. I have suffered with Chiari Malformation most of my life, but never
had a name for it. In my early years, I had 'growing pains' in my legs, suffered headaches and didn't like to go to the bathroom
as it made my headaches worse with the valsalva manuevers. In my 20's I had headaches, which now I understand I was going through
exacerbations and remissions of this illness.
When I was 36 I was involved in a high speed rear end collision and I had thought that most of my pain issues were related to
that. I spent the next 10 years with a few weeks per year with pain in my head, neck, upper back. I usually was able to get the
pain under control with massage therapy, exercise, and medication. After three or four weeks it would go away.
Approximately 7 years ago, I began my Chiari journey anew, and not a day went by without pain, it was a constant companion.
I sought out many different treatment options and received many different types of diagnoses.
Finally in 2005, I had a new MRI with a good reading, that discovered my Chiari (which was already visible in 2003 but never
discussed on my Report of Findings) I began my quest to find an expert to treat me. I sought a Chiari expert and called to
schedule an appointment. This expert called me at home and said to "run if anyone wanted to do surgery on me" I later found
out he was the most conservative of all the Chiari experts. I then sought information on the internet, and found out about
The Chiari Institute in Great Neck, NY. I scheduled my appointment in November 2005, and had all the tests including the CINE
MRI which disclosed that my cerebrellar spinal fluid was blocked posterior and restricted anterior. I also found out that I
had Ehlers-Danlos Syndrome, retroflexed odontoid that was pressing on my brain stem that was causing some more of my symptoms
including the blackouts. The evaluation was thorough and the validation of the reality of the condition made me feel that all
the years of the missed diagnoses was worth it.
I was decompressed and had an extraction fusion from my skull to C-4 on April 28, 2006, and I am still recovering from the surgery.
I am currently in pain management and feel that education, advocacy is key to overcoming this dread illness.
When Kathleen started CCI, I contacted Kathleen as we had talked on the phone regarding insurance issues and she was dreaming
big about CCI, and having a solid place for people that were newly diagnosed, those coping with children with this condition,
and those suffering a relapse.
I thank Kathleen, Sally and the others for their support and all the people that are here and welcome newly diagnosed, and those
seeking support and information about our condition and the conditions that run with this.
Contact Me Feel free to contact me anytime.
Virginia Bennett
A CCI member since its inception, Virginia became a moderator for the adult group in July, 2007.
For 35 years, she and her husband, Pete, worked on and managed Western cattle and horse ranches. Virginia earned her
keep "starting" and training horses, a lifestyle which came to a sudden halt in April, 2004 when a horse she was riding
unexpectedly stopped in front of a jump.
From the fall onto her head, she suffered brain injury and a 4-place "Jefferson Fracture" of the C1 vertebra. Thus began an
arduous journey to find her additional, trauma-related diagnoses, ending up at The Chiari Institute in New York (January '07)
where Dr. Bolognese reported that her C1 ring had never fused itself and that she'd gone back to work riding with her neck still
broken for almost three years.
Upon her return to TCI in November ('07), Virginia underwent Invasive Cervical Traction and learned something even more frightening.
Dr. Milhorat told her that at the time of her accident, her skull had separated from the C1 and slid to the side, eventually fusing
itself in a wrong position. This injury, atlanto-occipital dislocation, in layman's terms is known as "internal decapitation."
Dr. Milhorat reported that her Tethered Cord had elongated the brainstem and also created "a chiari" (but not Arnold Chiari
Malformation).
The next day, Virginia had the spinal cord detethering, a 7.5 hour surgery. She will soon head back to NY for the Cranio-cervical
fusion, finally stabilizing her neck and skull almost four years post-injury.
"I love helping the other moderators keep the list running. This is an incredible support group, a safe haven for those afflicted
with these conditions to find solid information and encouragement. The existence of this message board helps our doctors, as well,
in that their patients are much more well-informed about these rare conditions when they arrive at their appointments. Although I do
not have ACM, I have studied it for 3 years and I have many of the same symptoms and difficulties which help me to assist others. I
consider it a true miracle not only that I am alive today, but that I found the world of Chiari sufferers and doctors, as well as
this wonderful site," says Virginia.
Contact Me Feel free to contact me anytime
Contributions made to make Chiari Connection International's
web site possible. Thanks to all who contributed!!!
We would like to take this opportunity to offer our deepest
thanks to Billy Rowe, Jr., a list member and moderator.
It is though his extreme generosity that this web site
was able to come to fruition far sooner than we had ever
anticipated. And without the need for outside sponsorship!
Billy has put in MANY hard hours working on the site....
and working when he, himself, was suffering with MANY
of the issues that other people with Chiari and other
disorders endure. We can not thank you enough for your
help and for our new found friendship!
Our thanks go, as well to his partner, Tony Cole who also gave much time and expertise to the venture.
Sandy Rodgers:
Age 51, Originally from east coast, moved to CA in 1969. Currently lives in Oregon.
Legally disabled now. Former careers: Educational Therapist, elementary school teacher, writer, artist, environmental designer.
I have CMI-SM-TC-EDS+ and Hemiplegic migraines. Successful surgeries at TCI: 2-20-04 CMI decompression; 8-12-05 C-spine C-5-7 discectomy/fusion/plating. Upcoming 5-24--07: SFT for TC.
Mom of one adult daughter who also has CMI/EDS+.
Have two cats and one dog... and one man who also has CM/TC/EDS and is going to have his SFT the day after mine.
Members of Chiari Connection International Support/Information Group
Many members of the group contributed in many ways including giving stories, symptoms, and lifestyle suggestions.
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