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I just wanted to write to tell you how much I like the site, but also to
tell you about my unique situation with regards to Chiari. I was not born
with ACM, nor did I acquire it through severe head trauma. Rather, I
acquired ACM through a CSF leak that my surgeon said eventually healed, but
left me w/a 2 cm drop in my tonsils, as well as a large and growing syrinx.
I recently underwent decompression surgery on 4/4/07. I just want others out
there to understand that ACM is not just something you might be born with,
but it is indeed something you can acquire, even through a spontaneous CSF
leak like myself. I know my situation is very rare, even a dr. on staff said
he never heard of my situation. I just want others to not to generalize
about ACM.
Thank you,
Marcie Campbell
I have been visiting your web site for some months now. I have been
able to relate to many of the personal stories and have found the research
articles very useful personally and professionally. I am a registered nurse
of 18 years, and 4 of those as a charge nurse of a very busy paediatric
unit. Even with my medical knowledge myself and my colleagues were oblivious
to the effects CM1 could cause- let alone the treatments. Before I found
your website I was determined to ensure I was going to educate as many
people as I could on Chiari, but now I refer them onto your website. I have
used some of the articles to convince medical staff that Chiari is a real
condition that does cause symptoms and this I know has helped others. I now
have my medical colleagues up to speed and I know we have had some children
with Chiari that have been referred onto a Neurosurgeon quicker. So
thank you for setting up such an informative site.
Unfortunately I only got involved with Chiari last year due to being
diagnosed at the age of 39. My own Chiari story is like many others. I had
unusual symptoms dizziness, headaches, sore necks , numbness in the hands,
that unwell feeling. But I also had what they think was partial seizures and
a full seizure - the seizures only occurred only when I slept. I only got
the MRI after I had a full grand mal seizure (the seizure was unusual as I
can remember most of it ). From the first MRI I had, I was told that I
had Chiari and that this condition does not cause any symptoms. Well we all
know the answer to that!
The theory about my seizures at night was the my CSF was increasing to such
a high level at night that I had seizures. I did not have a history of
seizures and only experienced them when my Chiari symptoms were at there
worst and only when I slept. Is there any one else out there with Chiari
that has had seizures at night?
I live in New Zealand and thought I would never be able to find any one who
would be able to diagnose or at least help me.I would just like to inform
anyone living in New Zealand to know that there is expert help at hand. Like
many people with symptomatic Chiari I had a very difficult time trying to
get the right medical help. I did think I was going to have to go overseas
to seek treatment options . I was lucky enough to seek our a very good
neurosurgeon in Wellington Hospital who has been outstanding .I had
decompression and duraplasty surgery in November 2007 for Chiari 1
malformation . I am still recovering , and I am very slowly getting my life
back. I haven't had any further seizures. I am pleased I had the
surgery, but I didn't realise how long the recovery would take.
So thank again for setting up such an informative site. You are helping so
many people out there.
Tracy Stone
Palmerston North, New Zealand
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