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| About Us |
Kathleen Grigg Co-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, Billy,
who is also our Webmaster, and Virginia. Our parent's group
moderators are Lisa and Charnel, and our kid's group moderator is Joanna.
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.
Sally Reusser, Co-founder of Chiari Connection International Support/Information Group. ( aka Sal )
I would like to take this opportunity to welcome you to
our CCI web site. It is pretty much the culmination of
a dream.
Compared to Kath I am a late bloomer in the chiari world. I didn't become symptomatic until I was 44, following a couple
of horse back riding falls. ( the traditional trauma catalyst to symptoms springing up). I did make up for the "late start"
by becoming VERY SYMPTOMATIC, VERY quickly. I went, in a month's time, from teaching fitness classes to being totally bedridden.
I also experienced that various ms-diagnoses, that many
of you have dealt with, as well. My initial one was for
a severe sinus infection. This was "confirmed" by several
specialists. Strangely something like 7-8 different med.
regimes didn't help the problem. (It did highlight a potential
sulfa allergy, however. ) During this time several
trips to the ER ( which I NEVER do usually) for such things
as blackout.etc...didn't sway the diagnosis. Finally,
when my husband was forced to call 911 as I was having
a full blown seizure, the potential of neurological issues
was even considered.
From this came diagnosis of tumor, cyst, meningitis, etc....All proved wrong. It was then that I was beyond fortunate to have a new
neurosurgeon in the area ASK to be on my case! She correctly diagnosed Chiari and operated on me...That was years ago...I have led a
fairly "normal life" since... I understand how incredibly fortunate I was to have had my problem work out this well. SOOOOOOO many
are not this fortunate, even today!! This is the main reason I have always felt that I NEEDED to "pay back" in some way. I was
active and acted as moderator on another list for years.
Recently Kathleen and I decided to make the move to our own support group that would hopefully meet the needs of it's members, as
we saw them. A place with knowledge as valid and current as we can possibly make it. Also a place where people can come and feel
safe and supported! Thus Chiari Connection International support group was founded,
http://health.groups.yahoo.com/group/ChiariConnectionInternational/
And now the addition of this web site which should help
even more to dispense the help and information that is
needed by so many people in the world of Chiari and related
illnesses .
Please always feel free to communicate with us ...we'll
try our best to answer your questions or point you in
the right direction. Please join us on our support list,
as well.
Contact Me
Sally R...Decompression '91... Hydro..VP shunt with 2 revisions...Doing well, without medication, in Bethlehem,Pa.
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.
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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