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.
Our moderators are: Kathleen, Billy "Joey", who is also our Webmaster, and Denise.
The Parent's Group moderators are the same as our main support group.
We all have experience with Chiari and it has changed all of our lives. We have 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
have to offer
Contact Me Feel free to contact me at any time.
Billy "Joey" 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 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 for an evaluation.
My surgeon and his team 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 and they found
I had Tethered Cord. That surgery was preformed but had no relief of my leg pain. However, I can tell that things have stabilized and are not getting
out of control as they were before. I, as well as 3 different doctors feel that the tethered cord surgery has stabilized me to where I can
at least walk, even with the pain, can urinate even if I still have some problems, as well as helped stop the damage that was being done by
the cord being pulled on. Even with the decompression, it took away only a few symptoms, some got a little better, and some stayed
the same. However, before I had the surgery I was going down hill very fast and was almost in a wheelchair. So, I am so glad that I had
the surgery done when I did as I think I would be in much, much worse shape than I am now.
I had secondary issues with a chronic infection that has required 2 brain surgeries and led to me having chronic
meningitis. Neither me having Chiari or Tethered Cord are in play here. The infection keeps coming from a apparent slow leak of CSF from
my duraplasty (put in during decompression). I will most likely be disabled for life, due to damage and
other factors with the disease, but they did put a stop to my downhill spiral.
Now, I am facing a possible fusion, putting a cranioplasty back in, and another tethered cord surgery. Lets hope that things get better
after these procedures. I am still disabled and can only do things as I feel "decent" as there are not many days where I feel good at all.
So, please bear with us on updates, new pages, etc. Any ideas would be appreciated.
I am happy to be a part of the CCI community and urge you to browse through our vast amount of useful information. I know that CCI has provided
me some purpose in life!!!
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 "Joey" 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.
A child of the fifties, originally from the east coast, moved to the west coast in 1969, with homes in California and Oregon.
Legally disabled now. Former careers: Educational Therapist, elementary school teacher, writer, artist, environmental designer.
Loves to garden, cook, and travel.
Sandy is a zebra with CMI-SM-TC-EDS+ and a lifelong history of hemiplegic migraines. Had successful surgeries at TCI: 2004
CMI decompression; 2005 C-5-7 discectomy/fusion/plating; 2007 SFT for tethered cord. Additional surgeries for EDS-related joint problems.
Mom of adult daughter with CMI/EDS+. Shares life with two cats and one dog... and one sweet man who also has EDS/TCS. Life is good.
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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