Thank you!!

[Guest guest]

To all of you who have read my message posted thru Garn

regarding post-fusion/post-tethered cord release surgery pain, I want

to thank you. It's great to be with the group again!!

suggested I write the group and tell you all about myself.

Here goes:

My name is Cassidy Rose Harja. When I joined the group, around 3

years ago, my name was Harja and the group was headed by

someone else. You long-timers remember. I am 40 years old and am a

nurse. I am married, have a 13-year-old daughter with occasional

joint pain at this point, and live in the Seattle area.

My story is like many of you. I was sick with strange symptoms that

I could never get rid of no matter how many doctors I saw. As a

teenager, it was headaches and inability to keep up in gym class. I

do now think that my inability to pay attention, focus, read, and

remember what I learned was all part of this fun thing. As a young

adult, I managed to continue to work, but I went thru many jobs and

couldn't figure out why.

When I turned 30, I wanted a change and went to college. At 32, I

got my nursing degree and began a career I thought I loved. I

continued to have trouble with memory which is not acceptable in my

line of work. I also had more problems with severe headaches when I

worked and would end up in the ER being treated for a migraine while

at work. After awhile, I thought my problems were related to working

a 12-hour night shift and changed jobs. In June 2005, 6 months after

starting my new job, my symptoms just exploded.

I was referred to a neurologist and diagnosed with MS. But, none of

my tests supported it and my doctor didn't know what else my 100+

symptoms could be. On MS meds, I got sicker and sicker. 6 months

later, I had to quit working and stopped the MS meds. I also had to

use a wheelchair 80% of the time and couldn't climb stairs without

alot of help. My legs just wouldn't work. At the same time, I saw

the show on Mystery Diagnosis about a teen that had symptoms like

mine. She ended up at TCI with the diagnosis of Chiari. That was

the life-changing event for me.

I went to TCI's website and downloaded their questionnaire (no longer

online), filled it out, and faxed it to them. I got a call from my

NP a couple hours later telling me I was very sick and needed to come

to them ASAP. I was diagnosed with a mild unidentified hereditary

connective tissue disorder, tethered cord, craniocervical

instability, and later functional cranial settling. In November

2006, I had TC surgery. In December 2007, I had my fusion surgery

with some decompression too.

Life after surgery has been challenging. In many ways, it has

helped. I am blessed to be out of a wheelchair walking and climbing

stairs. I have fewer urinary problems, but still had to have surgery

for that too. Sigh! My husband and I do see slow but noticable

improvements overall, but I'll never return to nursing or working a

full time job. I'm on disability, but try to help my husband with

his business when I physically can. Oddly, a weird " side effect " for

me after the CCF surgery has been a change in my personality. I

don't fully understand this one. I just know that I came out a

completely different person. Hence, the name change since I became

alienated from my family and my birth name was painful as a result.

Most of all, I just try to help others like me.

I apologize for the long story. Those of us with this can't tolerate

reading alot. If you have hung in there, thank you so much. If you

couldn't, that's okay too. If my story can help, it means so much.

Cassie