A woman first diagnosed with borderline Chiari, then Pseudotumor Cerebri, and finally tethered cord.
I woke up in the middle of the night with my very first headache when I was a teenager. I don't remember how old I was - but the
pain was excruciating. My mother assumed it was a "sinus" headache and went out to an all-night store to get me some Sine-Aid.
I took the medicine and the relief was quick and wonderful. So, for years I naturally assumed I had sinus headaches.
When I was 19 years old, I joined the USAF. I passed all physicals with flying colors. They told me I was in perfect health and
I was happy to accept their word.
A few years later, my headaches were becoming more bothersome. I knew I took more Excedrin than a "normal" person should.
The Excedrin always worked to relieve the headache so I preferred not to think about it. I was otherwise in great health.
I was petite and energetic. I had never - not once - had a common cold. I seemed to be prone to bouts strep throat though.
In my mid-20's, I began to have skin problems - acne. I struggled with my skin and headaches throughout my mid-late 20's. One day,
as I listened to Dateline NBC on television, I heard something about "headaches" and "numbness in the extremeties". Then I heard
"chiari". I almost dismissed it completely because I didn't have numbness - or any of the numerous symptoms they talked about.
My ONLY symptom was headache. So I decided to file it away in the back of mind.
By age 28, my headache was constant - unless medicated. It was accompanied by aching tight muscles in my neck/shoulder area.
I was always asking friends to crack my back for me. Now that I think about it, I can remember asking my best friends little
brother to walk on my back when I was just 15 years old.
I also acquired a sore throat which felt like a mild case of strep. By this time, I had gotten strep so many times that I figured
it would go away on its own like it always had. Four months later, I finally went to my ENT. For the sake of keeping this story
short, I'll just say that I went through 5 courses of antibiotics and the sore throat remained. It was visibly red with slightly
swollen lymph nodes. I saw primary care doctors, allergists, immunologists, ENT's… I underwent countless blood tests: hiv (twice),
mono (twice), t-cells, diabetes, cancer…. I had cultures taken of my throat: bacterial, fungal and even STDs. No one could figure
it out (I am 36 years old today and still have the sore throat). I searched online for conditions related to headaches and sore throats.
I was convinced for a while that I had systemic candida. Oddly, taking the medication, Diflucan, did make my headaches go away for a
short time. But undergoing treatment for candida didn't have a real impact on my symptoms.
Finally, I felt that I had exhausted every other option: allergies, candida, hormones,
vitamin deficiency, etc. I decided to look into chiari. I got online and did some
research. I quickly realized I needed a brain MRI. So I asked my neurologist to
prescribe one. He ordered the MRI and I got a copy of the films. When I looked
at the films, I could see that I did not fit the "traditional" picture of chiari.
My cerebellar tonsils were not herniated out of my skull. But, to me, the cerebellum
did look very "packed" and crowded. I could literally see that my brain was impacted
against the back of my skull
But when I asked my neurologist to look at the image, he said
there was "no chiari". I then signed up for the support groups online. It was
there that I found what I needed. There were others who had been diagnosed with
chiari and had little or no herniation. A few people encouraged me to go to the
Chiari Institute in New York. I hesitated. It was a long trip (and a lot of money).
I decided to first go see a chiari specialist at Johns Hopkins in Baltimore. The
doctor spent only five minutes with me. He could see that, on the outside, I looked
completely normal. No limping. No lazy eye. No balance problems. My MRI showed
no herniation. He immediately dismissed me.
Again I hesitated to go to NY. But my online friends kept urging me to go. So I did….
I almost couldn't believe it when Dr. Bolognese said that I did have borderline chiari. But he seemed hesitant to do the surgery.
He explained that the institute is heavily scrutinized by organizations that mandate ethical medical practice. He discouraged me
from surgery and offered several non-surgical options. The plan of attack was: get a spinal tap and start taking the medication,
On the way home from that first appointment, I found myself doubting…what if Dr. B was wrong? How could he be so sure when it's only
a matter of millimeters? What if I was "borderline normal" instead of "borderline chiari"? I was still having doubts when, a week
later, I decided to place a call to my great aunt who lives in Mississippi. We weren't very close but I decided to tell her about these recent events. When I told her everything, she responded "Amanda, that sounds like the same thing your cousin Nina was diagnosed with a couple of years ago." Sure enough, I later confirmed - my cousin was also diagnosed with Chiari Malformation. Hers was a significant case at 9mm.
I had the spinal tap done at Johns Hopkins. The opening pressure was 230mmH20. Not the highest I've heard of but definitely high.
After the spinal tap, I felt extremely ill for 7 days - they had removed too much fluid. But after 7 days, I suddenly felt better -
MUCH better. I had about 10 days of bliss. During this time, I had no headache and my skin improved greatly. Then the nasty high
pressure headache returned.
I decided to go back to the doctor at Johns Hopkins, in hopes of convincing him to diagnose me (this would allow me to get surgery
in-network and much cheaper). I explained to him that TCI diagnosed me, the spinal tap showed my ICP was high and my cousin was
diagnosed with chiari. He still refused to acknowledge that I had chiari. I had no choice but to seek treatment at TCI. Today I
consider it a blessing in disguise.
My battle wasn't nearly over. I tried Diamox for three months and it didn't seem to help at all. I went to TCI for a follow up and
the neurologist told me "you are not a surgical candidate because your symptoms are not disabling enough". I was stunned. I had
been unsure of how to answer the questionnaire so decided to put the best-case answers - how I feel when I'm medicated. I didn't
want to come off as a hypochondriac.
It took some convincing (and begging) but finally, they agreed to do surgery. Dr. B recommended that I have decompression and a VP
shunt placed. I was determined not to get a shunt. Dr. B and Dr. Milhorat agreed to do the decompression first to see if I might be
able to do without the shunt. In July 2004, I had decompression surgery. I woke up from the decompression feeling normal for the
first time in years. I was ecstatic! Life was good…. for awhile.
In August 2004, I woke up one morning with the familiar high pressure headache. It had returned. I waited…day after day…week after
week…and it remained. Finally, I realized I needed the shunt. In Nov 2004, I had a VP shunt placed. Living with the shunt was awful
for me. It never did relieve my headache. It seemed to take me immediately from a low pressure headache to a high pressure headache -
there was no "relief" in between. I thought it couldn't get worse and then….
Just one month after having my shunt placed, I became pregnant with my first child. Immediately, I noticed a sharp increase in my head
pressure. I started researching online and found out all about how pregnancy increases a woman's venous pressure by as much as 40%
(which contributes to higher overall ICP). My ICP was already chronically high. This certainly didn't help. My doctors were trying
to play catch up by adjusting my shunt every month or so. But they always seemed one step behind and were never able to really make
me comfortable during the pregnancy.
Five months into my pregnancy, the test for neural tube defects (Spina Bifida and related conditions) came back positive. My doctor
advised that this was probably a "false positive". We re-ran the test and it came back positive again. Throughout the pregnancy,
I worried that my child would be born with Spina Bifida. When he finally came, he was a perfectly healthy baby boy - with a strange
"dent" just above his gluteal crease. It was odd looking and I remembered reading about Spina Bifida - birthmarks, dimples, holes,
hairy patches - they were all indicators of an underlying problem with the spinal cord. Now, it occurred to me that I had a red
birthmark on my lower back when I was born. It faded by the time I was 12 years old. Ironically, I had always thought it was kind
of "cool". Now the pieces of the puzzle were coming together.
I emailed Dr. B again with this new information about my son, his odd dimple, my birthmark…. This time he said I should be tested for
a very hard to detect form of tethered cord called "Occult Tight Filum Terminale". My first visit to TCI (for the purpose of being
evaluated for OTFT) was a bust. All of my MRIs looked normal. I was told I didn't have it. When I got home, I began to research
more. And what I found was that I had many unobvious indicators of OTFT: flat feet, pinched feeling in my hips, frequent urination,
small lump on my lower back, the birthmark when I was born, etc. I contacted Dr. B directly and made my case. He re-evaluated me
for OTFT and found that I did, indeed, have the condition. I was detethered on Nov 7, 2006. Every symptom I suffered prior to my
detethering is gone (minus neck pain I carry as a consequence of decompression surgery). My shunt is now tied off and no longer used.
I never needed it to begin with. I can tell that my neck is unstable - I can just feel it. But it only hurts when my vertebrae fall
out of alignment. I have pain in my neck about one day per week. That's a heck of a trade offfor the constant high pressure I had in
the 8 years prior to my surgery!
Today, I am doing pretty well. I am very active online in trying to help others. My son is a normal 2 year old little boy and very
happy. I watch him closely for any indicators of chiari or OTFT. Knowing that most cases of chiari and OTFT are asymptomatic gives
me hope that he will never know a headache. But I am prepared for the day if it comes.
The first time I ever read or heard the word "Chiari"
was February 2002. But I should start a little before
Although looking back, there were many symptoms that I
had even from childhood, it was not until October 31,
2001 that I thought for the first time that there was
something "wrong" with me. It was on that day when my
husband and I were at a dinner theater celebrating our
dual October birthdays. During the performance, out
of the blue, I had a sudden and intense "episode" that
lasted for only a few minutes. I had a sudden rush of
pressure to my head and felt like my head would burst
and/or I would just pass out or fade away. I stood up
quickly and excused myself to the ladies room. I
didn't want to ruin our night out. We even had a room
at our favorite motel suite and the kids were at their
grandparents for the night. So, I went outside,
breathed in cool air and revived and felt OK. But I
was pretty shaken.
I contacted my PCP on Monday who ordered a cranial
MRI. He said it was normal. Then he ordered a CTSCAN
of my head, stress test and echocardiogram from my
heart, and EEG and EKG. Everything came back
perfectly normal as per my doctor.
The frequency of my "episodes" increased, and without
any warning, I would have moments when I thought I was
either dying or going to pass out. One time was so
severe that occurred when I was getting our 3 small
sons ready for school that I grabbed a crayon (the
only thing I could find at the time) and wrote on a
note and put on the table "Meet me in Heaven". I
really thought I was dying. In the meantime, my spine
and shoulders and back ached so badly, I could hardly
stand it. I would have sharp, stabbing pains in my
spine that felt like someone stuck a hot knife between
my shoulder blades and twisted it. I also had
frequent dreadful stiff necks.
My local doctor, who has really been great throughout
this trying to figure out what was wrong, sent me to
the local neurologist. Well, he diagnosed me with low
sugar and possible anemia. But he was very
non-communicative, and left me with no help or
suggestions other than to buy a skin prick and check
my blood sugar several times daily. (I still have it;
maybe I should try to sell it on EBay)
In my quest for help, I went to a neurologist in the
next larger town who diagnosed me with silent
migraines and thoracic outlet syndrome. I also went to
several chiropractors. One gave me some weird
supplement which almost killed me by truly making me
faint. (To this day I cannot remember what it was
because I threw it in the trash can) Another almost
killed me by cracking my neck several times because he
said it was out of line with my back. Oh dear.
After 2 months of no answers, I kept getting worse and
worse. One day I was in such terrible pain, that we
decided I needed real help. My husband stayed home
with our 3 small sons and my sister drove me to a very
prestigious and well known hospital center in
Baltimore, MD. I was seen by a resident neurologist
who had my case reviewed by their chief neurologist.
After new MRI's of my head, entire spine, spinal tap,
and other tests, they concluded that I either had
lurking MS (even though the spinal tap clearly ruled
that out), or that I "needed to go home and see if I
had hidden stress in my marriage". (At that point, I
started to choke the neurologist who instantly
affirmed his stress diagnosis. NO, JUST KIDDING) Oh
yes, he also said I had a high inflammation factor in
my blood, but they had no idea what that meant.
So by the end of February 2002, I continued to decline
in health, had many scary "episodes", could hardly
remember how to drive home, couldn't remember my kid's
teacher's names, and was in terrible pain almost
constantly. I didn't know it at the time, but my
husband was becoming concerned about leaving me alone
with the kids.
But I have to interject something at this point. I
cannot even begin to tell my story without telling you
the most important aspect of all throughout my entire
That is the help and comfort that I received from God
and the various healing touches along the way from
Jesus, the Great Physician, which have been the real
story behind the story. I have learned to see how my
daily blessings, in whatever shape and size, are out
of the wonderful hand of the Lord, and that without
Him, I really could not have survived. I would never
wish this Chiari monster on my worst enemy, but I also
know that I would not trade the wonderful times I have
been directly help by God. Many experiences have been
so special and sweet, that it is difficult for me to
adequately relate them. I am not thankful for my
Chiari, but I am thankful for how God has used it to
make me a better person. I say that humbly, because I
needed to be a better person. Now, I have compassion
for people in general and am grateful for many
blessings that I never even realized before.
But back to my quest for a diagnosis. After much
prayer and with many people praying for me, someone
suggested that I get a copy of my MRI reports to put
in my medical file. I called my doctor's office and
had one faxed to me. It read that my MRI was
"essentially normal but that I did have a slight
Chiari malformation". Having no idea what Chiari
meant, I searched it online, and by God's grace, found
articles that Dr. Thomas Milhorat had written. I saw
symptoms that described Chiari, and with much
excitement called my husband and sister and told them
I think I found out what was wrong with me. The
symptoms just fit me to a "Tee". I then found an
online support group and connected with a wonderful
person, "Kathleen" who told me about Dr. Milhorat's
practice in Manhasset, NY at the North Shore
University Hospital. Looking back, it was just
amazing how I found Dr. Milhorat and Dr. Bolognese so
quickly. I know many people suffer years and years.
But in just 5 months from my severe onset of symptoms,
I was very close to a proper diagnosis.
Dr. Bolognese ordered more MRI's, a tilt table test
(some of you remember that one), and blood work to
name a few. Then the big day came when on March 31,
2002 we met Dr. Bolognese for the first time. He
carefully and patiently showed us the films, the CINE
MRI results, and others that pointed to the fact that
I had a retroflexed odontoid as well are Chiari
malformation with about 5 mm herniation. My CSF flow
at the back of my brain was minimal. He also said I
had a pre-syrinx condition. He recommended both
decompression surgery and cranio-cervical fusion.
Since all of this was brand new to us, we digested the
information as best we could and went home. Again,
being totally new to this, we wanted to learn more,
and made appointments with Dr. Oro at the University
of Missouri, and another well known neurosurgeon at
the University of Iowa, both who were specialists in
Chiari and retroflexed odointoid. Dr. Oro was very
thorough and confirmed my need for decompression
surgery. The other neurosurgeon was not at all
pleased to be a second opinion and not so politely
told me to take my films and go home. That was just
after he said all of my symptoms were from a herniated
C6 and C7. When I questioned him as to how location of
herniation could cause cognitive issues and difficulty
swallowing and my episodes, he just made me feel like
crawling under the table.
So, we went home knowing that we needed the
decompression, but wanting to take our time on the
fusion surgery. We just could not feel clear about
that part of the surgery. We were confident that what
Dr. Bolognese was telling us was indeed accurate. We
went back to Dr. Bolognese and asked if he would just
do the decompression. We would take a wait and see
approach on the odontoid. And, we felt God was
directing us to wait too. Amazingly enough, the
symptoms that pointed to the retroflex odontoid
improved dramatically as well for a few weeks before
the decompression surgery.
So, on July 23, 2002, we had posterior fossa
decompression. Although the first 3 days were a rough
recovery, (that was back in the days when they used a
lumbar drain for the first days following surgery),
after the lumbar drain was removed and I started
improving, I knew my cognitive was back. In fact, I
remember telling myself before surgery that if my
cognitive was restored only 50 percent, it would be
worth it. So I was very pleased and have never
regretted that surgery. Well, I think my cognitive
was restored at least 90 percent. (Maybe my dear
hubby wouldn't agree, but that's another story :-).
And, thank God, my "episodes" of feeling like I would
I recovered well from July to December 2002. Then
about Christmas 2002, I started having instances when
my legs would turn to jelly, I had increased
difficulty swallowing, nausea, and panic attacks that
lasted about 20 minutes. My panic attacks were really
hard to describe. They would start with me getting
really cold and shivering. Then my thighs would get
weak and very shaky, my heart would race, and I would
basically feel an intense and unrelenting state of
panic. Let me say that my mother raised me to be
pretty tame and level-headed. It was just not in our
vocabulary to have a "panic attack". I pray that does
not offend anyone, because I have learned through this
that panic attacks are very real and not at all a
reflection on one's mental state. It was during many
of these panic attacks that I leaned so heavily on the
peace of God. And time after time, He was there to
help me through them. My husband, boys, and extended
family were all very supportive of me. Many times, my
husband, Troy, would call for prayer, and so many
prayers were offered. My legs got so bad that I used
a wheelchair for 2 months. I actually didn't have
occasion to use it much because I stayed in a hospital
bed in our living room trying to delay surgery. Yes,
it became clear that it was time for the
cranio-cervical fusion surgery.
Then one night when the panic would not relent,
another dear sister drove me 5 hours to the emergency
room at North Shore in New York. Dr. Bolognese and
Dr. Milhorat were most gracious and after seeing them
again I knew it was definitely time for the fusion
surgery. Because there were not available operating
rooms, I had to go home and wait for 2 weeks for my
July 14, 2003 surgery date. I have to say they were
by far the hardest 2 weeks of my life. But again,
special times with God.
God knew it was good for me to wait for the 2003
fusion rather that the 2002 fusion, because I was able
to avoid having the halo which was used during
surgeries in 2002. The fusion surgery and recovery
were still VERY difficult, but thank God, the panic
attacks were GONE and I could once again walk on my
I have to tell you that it takes a constant adjustment
to have the rods in my head, but I am not at all
complaining. I have never had more peace and felt
more content in my life that I do right now. I am very
limited and restricted in what I can do. I went from
being a real estate developer/building contractor with
my brothers and husband to not being able to sit
through one construction meeting that lasted only 30
minutes long. I went from being very athletic and
skiing, bike riding, and doing aerobics to not being
able to run across the street to get out of the rain.
I am not patting myself on the back that I am able to
cope. But because the gracious hand of the Lord is
with me, it very seldom bothers me that I am so
restricted. I am just grateful that I can get up in
the morning, look outside at the beautiful trees and
rolling hills in the distance, and even often see deer
run across the driveway. Nothing is more rewarding
than being able to get up and thank God for His many
I am so thankful that we were led to Dr. Milhorat and
Dr. Bolognese who have so tirelessly and expertly
diagnosed me and treated me. We have called Dr.
Bolognese late at night, in the middle of the night,
in the early morning hours, and even on Christmas Day.
He has always been there to help us. I have just
successfully had surgery on March 7, 2007 to treat
occult tethered filum terminale (OTFT) or cord
detethering surgery. I now feel better that I have
since October 2001. People tell me that I look great,
and I feel great too. I am still limited because of
my rods, but I thank God for every little bit of
As I see my kids, my brothers and sisters, and many
nieces and nephews who suffer with some of my same
issues surrounding their own Chiari, I am so grateful
for the progress that has been made over the past 20
years in this field. I am thankful that they can avoid
going to doctors who don't have a clue, and can be
seen from the start by The Chiari Institute team. And
most importantly, I know that God will be with them as
He has been with me.
Thank you for letting me share just a few details of
my story. I trust you will find some things helpful.
I have researched and read posts for years (5 probably). Had problems for 11 years. Went to many, many doctors here in Georgia
and noone could help me. My neurologist tried with medications but finally said you have to go somewhere else.
Well that was not a hard decision as I knew in my heart TCI was the place and so did my neurologist.
Had surgery PFD September 12, 2007 with Dr. Milhorat and Dr. B and I feel better than I have in 11 years. I have tethered cord
but we are going to wait and see how things are going 6 months to a year from now.
My daughter has ACM1 as well and she is only 12. I will have her and my 14 year old MRI'ed and x-rayed soon. Dr.
Milhorat said if caught at the right time my 12 year old probably will just need tethered cord release and her ACM1
could correct itself.
Sorry, so long but I just wanted everyone to know things can be better if you hang in there and get to the right doctors.
THANK YOU SO MUCH TCI, DR. MILHORAT, DR. B., DENISE(BEST PA IN THE WORLD), AND EVERYONE AT NORTH SHORE UNIVERSITY HOSPITAL.
Hello, my name is Joleen. I have been married 17 years to a wonderful man and we have two beautiful children ages 12 and 14.
My journey has been long with many bumps and bruises along the way.
As a child I was very healthy. Living on a dairy farm with every animal you could have I was always outside and very busy.
I was the only child and had two wonderful parents who loved me dearly. At the age of 17 and in college I began to experience
pain in my stomach area. I saw several doctors and they related it to female problems. At the age of 19 I met my husband and
4 months later (3 days after my 20 birthday) we married. In 1992 we had our first baby. We had a very healthy, baby boy. Although
the doctors seemed to think I was due a week later than I really was I went with them. When I finally delivered our son looked like
he had been boxing and had an enormous elongated head with two black eyes. He was the joy of our life.
I began to have many upper respitory issues along the way. I seemed to get everything under the sun. Then in 1995 I became
pregnant with our daughter. Right away we had problems. The blood test revealed that something was wrong and a test was done to
take amniotic fluid out. That test put me into premature labor on Valentines Day and the test revealed that our daughter would be
born with Spinal Bifida and/ or Downs Syndrome. We were devastated but after a lot of prayer we decided to have her. She was a
blessing from God and He would not give us more than we could deal with. She was due in late May. In March I had three T.I.A's
(small strokes). The doctors could not figure out what was causing them. On April 23rd my water broke and we rushed to the hospital
yet again. I was not doing good. They wanted to keep the baby in as long as possible so many monitors were applied on both of us and
the risk of strokes for both of us were high. Our daughter's heart rate dropped and the cord was found to be wrapped around her neck
two times so we ended up in emergency surgery and our beautiful baby girl was born. She was perfect and the doctors could not find
anything wrong with her like they suspected. However blood tests revealed I had a rare blood disorder and was put on blood thinners.
The next few years I was in and out of the hospital with possible T.I.A's but the doctors could never find anything and neurologists
would send me home. They could never regulate my blood and I was always very pail, weak and my hair was falling out and I had bald
spots. I refused to take any more blood thinners because I felt they were killing me. I began to have better days. In 1998, after
continuing female problems I had a total hysterectomy and the next day was thrown into full blown menopause at the age of 28. My
body from that point on hit all the odds.
Every year I went to the hospital for one reason or another and people around me began
to make comments that I was ruining my family's life with trips to the doctor, it was all in my head, deal with it, and maybe your
depressed. I did have some support from family but always felt like people were so tired of hearing of what was wrong this time. The
doctors were always trying to put me on anti depressant medications. One even gave me a psycotic medication and told me it was an
antibiotic, leaving me at my son's baseball game drooling and very scared. I constantly had numbness in face, hands and feet along
with dizziness and headaches. Again a trip to the blood doctors ended up at a neurologists and ultimately home with unanswered
questions and frustration. Over and over the same routine but different doctors trying to get second opinions left me feeling
stupid and thinking that maybe I was crazy.
In 2003 part of my breast was removed. If it was not one thing it was another. In 2005 I had to look for another blood doctor
due to insurance changes. I explained that I was tired of always thinking I was stroking out and then sent home because no MRI
was done and being told that it was all in my head. He did another blood test which revealed that not only did I have one blood
disorder but now I have two. He stated that he did not want to put me back on blood thinners because there was too much of a risk
and that I would have to be careful because I now was at a very high risk of stroking out. He continued over the years to offer his
advice that I was not going to get better and maybe I should think about seeing a doctor and getting on anti depressants to help with
the process. I refused every time. I then was diagnosed with severe osteoporosis. The medications were not stopping the process of
bone loss. Finally after 2 years I found a liquid that had remarkable results and the doctors took me of the medications and kept me
on the liquid.
I have not always been clumsy but started hitting my head on things, running into walls, falling, heart palpitations, blacking out,
dizzy all the time, horrible headaches and my memory was really bad. There were days that I could not do simple tasks because I could
not keep things in my head and execute them. I began writing sticky notes everywhere and when I shared this with anyone it was always
a joke that it was age. I am a very active person. I love to do hard labor and it usually involves being outside. But I began to get
weaker and weaker. I would not always share with anyone because I felt I was bothering them with yet another thing. In 2005 I went
boating and had a whiplash accident. The doctors revealed that along with that, I had TMJ. In August of 2006 I became very ill and
ended up in the hospital 3 times until they found out that I was one of the few to get severe salmonella poisoning. They said that my
immune system was really low. I was also diagnosed with severe sleep apnea. In January of 2007 I made an emergency room visit with a
possible heart attack. All the tests showed that I was fine. My blood pressure was high for me but by the time we left the next day it
had gone back down to my normal 85/50. I became increasingly weaker, the headaches became worse. My neck was in knots all the time.
In June I ended up I the emergency again with possible stroke. They did a CAT scan but nothing. My arms and legs started to hurt all
the time. Numbness and tingling were constant. Daily headaches and nausea became very troublesome. I shook constantly. Blood tests
revealed that my red blood counts were really low all the time. One doctor said my blood looked like a grasshopper was eating them up.
There was bacteria that ate them faster than I could rebuild them. But again, no answers.
What was happening? I could not enjoy my
children and be the wife God called me to be. I was so tired, so weak. I would have no more to do with doctors. I was done. I am
very active with 4-H and the local fairs and kept busy to avoid thinking about what was happening to my body. In August of 2007 I
worked the local community fair. We were so busy and when it was over I could not get out of bed for three days. I was so weak. The
dizziness was worse. My speech had become very slurred. My legs felt like they were so heavy and began not working. The headaches
could not be touched by anything. After seeing my blood doctor and letting him know that I was not going to go through the same
routine that I had been going through with him, he decided to do an MRI of the brain. The results showed no clot but stated that
I had a herniation of the cerebral tonsils and suspected Chiari I Malformation. The doctor said all he knew about this was that I was
born with it and that he would send me to a neurologist in late November.
I began researching Chiari online and found tremendous information and after doing a symptoms list was completely blown away. I had
99% of the symptoms. I began calling neurosurgeons and none knew what Chiari was. I found a doctor in Colorado that was very well
known for his research and his success on the surgeries he had done. Our insurance assured me that it would not be covered but I knew
that no matter what I was going to see him. On August 17th, 2007 I over-nighted my MRI to the doctor in CO. August 20th, he called and
confirmed that I had Chiari I malformation and scheduled an appointment to see him in late September. The doctor and his staff were
incredible! Two days later my symptoms had gotten so bad that it was affecting my swallowing and my breathing. I could no longer drive,
barely walk due to dizziness and weakness and had lost the feeling of being hungry. I emailed the nurse in CO and on September 7th, 2007
I had my decompression. My herniation was 10mm and had almost shut down the flow of myspinal fluid. My surgery was a success. The day
after I noticed my speech was 99% better (morphine was not helping the speech thing, ha ha). My fog had been lifted. What a blessing!
I was released on the fourth day and returned home. As I write this I am only on my 14th day out of surgery and I am seeing significant
changes already. I have grown so much from all of this and will continue to help others through their struggles.
Mine may not be over
as we all have bumps in our walk through life. Those struggles help us grow as adults and make us who we are as individuals. We have
to be our own advocates. We are the only ones who know what our bodies are telling us, no one else can. We are all individually made.
I have met some wonderful people in the last few weeks that have gone through this before me and have guided me through this. I want
to thank all of them so much. I would like to thank my family and friends for that stood behind me even though they did not understand.
They listened to me fall apart some days, comforted me, guided me back to scriptures and kept me accountable. I want to especially
thank our children for helping me, and loving me through all of this. Even though we home schooled until this year, I missed a lot
of time watching them grow, but it is not too late. They have seen so much hurt and pain. All they have ever known is that Mom is
always sick. I look forward to spending much needed time helping them become the person God has called them to be. I love you
guys so much. Words will never be enough.
Last but not least, I want to thank my wonderful husband Brian for being my best friend, never leaving my side. He spent
nights holding me when I became addicted to morphine after a surgery, drove me back and forth to hospitals with no sleep,
held my hand when I felt so alone and wiped away my tears and told me we would make it through it. He sacrificed so much of
himself to be by my side. I love him so much and I look forward to walking hand in hand being the kids we love to be and raising
our beautiful children. I pray this is a new beginning for us and no matter what happens in life I am so blessed to have him
as my husband. I love you Brian.