As I reflect back now, I had always had signs of ACM, since a child, the
closest I ever got to a diagnosis was Arthritis of the neck!! I went
through many years believing I had arthritis, even from a teenager, and just
put up with it and the headaches I learnt to live with using all the usual
remedies of Deep Heat creams, medication occasionally which never really
helped and careful lifting.
One evening after attending the Gym, I was having a shower and suddenly
collapsed, no warning, and remained semi unconscious for several minutes.
I was referred to a Neurologist at a large teaching Hospital, who first
confirmed ACM after ordering an MRI, and before I could turn around, he
jumped off that ban wagon and decided I had migraines and painless migraines
to be exact!!!!
I think my biggest mistake was, I had little to no knowledge of ACM and when
the Dr. finally put a name to everything, I sat back, stopped complaining,
thinking he would just take it from there and do what ever was needed to be
done......BIG MISTAKE! We all know how one gets over complaining for years
on end and no one listens to you, you're exhausted!!
My family Dr. always treated me like an idiot and would tell me when ever I
complained of numbness, headaches, stiff neck; it was due to the weight of
my hand bag, though she never bent over far enough to even pick it up. She
would tell me it was all in my head and to get on with life. In short, she
was fairly emotionally abusive towards me and my confidence was so low by
this stage. My last visit to her, she wrote out a script for antidepressants,
which I looked at, through it back at her and screamed out of the office waving my
hands all over the place saying, "I am so over this etc..." went up to the office
staff said "the cheapest payment will cover this visit, and even then that is too much"
and never saw another DOCTOR FOR 2 YEARS, APART FROM THE NEUROLOGIST WHO ALSO WAS
TREATING ME LIKE AN IDIOT. My last visit to him, I had my daughter with me,
he snarled at her, had me in tears and said there was nothing wrong with me as I sat there
complaining of the constant numbness, headaches, vagueness, inability to
read sentences correctly, ear pain, miss pronouncing words, blacking out at
the wheel of the car whilst driving and all of the rest of it.
By this stage, I had educated myself re ACM, contacted TCI sent in my MRI's
to be reviewed, I had searched the internet to find a Neurosurgeon with
expertise in ACM and made an appointment with him and also sort Dr. B's
professional opinion on this particular Neurosurgeon, and he recommended him
as being the best for my condition, where I lived. That was enough
reassurance for me. I then had the difficult task of demanding from the
Neurologist, 3 times to be given a referral, which he finally gave in and
sent me. The referral itself was very terse and demeaning, however I had it
and that was all that mattered to me.
The Professor I went to was at a different teaching hospital to my
Neurologist which I think was good. Within 6 months after my Private
insurance kicked in, I had surgery, as below in my signature, and though my
recovery was initially slow, I have NEVER looked back.
One loses track after awhile, but I think it was 3 years to the day almost
from seeing the original Professor of Neurology, to finally having surgery,
and that 3 years in between was horrific, stressful, emotionally
disheartening, physically and emotionally traumatic, and a very long and
lonely journey.
I was at the stage, where I too wondered if it was all in my head and that I
was a hypochondriac just like the Professor of Neurology and Dr. were
telling me.
I can honestly say (apart from my friends and family, who didn't understand
but know I was not a hypochondriac) that only 3 persons on this planet who
believed me, was Dr. B., Ellen (his Nurse) and the Professor who finally
did my surgery.
The first time I ever read or heard the word "Chiari"
was February 2002. But I should start a little before
that.
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
experience.
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
faint stopped.
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
own.
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
blessings.
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
improvement.
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.
My name is Hannah Keck-Flory. I am 18 and live in IL (close distance to St. Louis MO). I have just recently had my last visit to
TCI and just started using this website.
I had my first brain decompression by a local neurosurgeon and it was unsuccessful. After this surgery, not only were the syrinxes
in my spinal cord unchanged, but a pocket of fluid (pseudomeningocele ) had formed at the base of my brain. We found Dr. B and M at
TCI a few months later (HURRAY!!). They informed my parents and I that not only would I need ANOTHER brain decompression but I
would need a cord detethering surgery as well. While this information was mind-blowing, I will say that everyone at TCI is absolutely
amazing. I felt completely safe the entire time I was with them.
The detethering surgery (June of 2006) was definitely not as bad as the decompression. I was out of bed and scooting around within a
few days. I felt almost immediate relief from my headaches in the weeks to follow this surgery. Four months later (Oct. 13th 2006)
I had my second brain decompression. The doctors and nurses in New York Long Island Jewish Hospital really know what they are doing
and deal with chiari patients all of the time. This made them more capable of dealing with my needs and caring for me. I was able to
go home a week after this surgery and was feeling almost normal about a month later. I just had my post-op visit on April 13th, 2007,
where we were told that the syrinxes were cleared up and everything looked great from the surgery. I now have to be careful of what
I do (how much I can lift, no rollercoaster's or car accidents etc), and get annual MRI's.
I have to say that looking back on these last two years has made me mature quite a lot and put many things in different perspectives.
Going through this more than once is a bummer, but for me it was easier the second time through (knowing what to expect). I feel
happy and healthy and got the clearance to play for a rec. softball team this summer!!! To anyone who is going through this (or
something related), you should know that you are in the absolute BEST hands possible. TCI, the doctors and nurses there were my angels
in disguise and I will be forever grateful to them. If there is anyone who has any questions or comments, or who may want a hopeful
shoulder to lean on, please email me and let me know. I will be happy to answer ANY questions.
Hannah Keck-Flory from IL
Decompression July of 2005 @ St. Louis (unsuccessful)
Spinal cord detethering @ TCI June of 2006
2nd decompression @ TCI Oct. 2006
The Chiari Institute : priceless : )
I'm 40 year old mother of two girls, 19 and 17 and married for 20 years I was diagnosed with Chiari Malformation in 2002 and
Tethered Cord in 2006. It all started however back in 2000, I was diagnosed with endometriosis. Following the hysterectomy,
I suffered undiagnosed right-sided pain from my neck to my toes with headaches 1000 times worse than migraines. I kept telling
the doctors that if you cut my body in half that my right side was in searing burning pain and my left side was normal - doesn't
that tell you anything? I was sent from the gynecologist to urologist - spine doctor - neurologist - family doctor and then in
the summer of 2001, I gave up. I had lost my job. I lost time with my kids, husband and family. I was depressed and sick of it.
I was diagnosed with everything from fibromyalgia to cancer. I was given drug after drug after drug. Nothing really helped.
I just decided to forgo treatment and live with it. I lost my job because I couldn't get better. I had a Brain MRI, Cervical MRI,
Thoraci MRI, Pelvic MRI, Lumbar MRI, blood work, CT myelogram, multitude of x-rays from plain x-rays to x-rays w/dyes, you name it
I've had it. . Nothing was being diagnosed. I had physical therapy and I was still sick. I could not walk through our regular-sized
Wal-Mart without wanting to pass out. I stopped grocery shopping that was now my husband duty.
Fast forward, it's 12/01, I had a doctor call me and ask how I was doing. I told him that I was the same and I have decided that I
was going to live with it. He said that I should have another brain MRI. I told him that I didn't see the point. He thought that I
should and convinced me that it would help. I had a2nd Brain MRI. It was 2002 and I was finally diagnosed with Chiari Malformation.
A year after the mysterious pain began. The neurosurgeon said and I quote, "you have a text-book case." And I said and I
quote, "Well, send that text-book to Cody because I don't think the doctors have read it yet." I think he thought I was kidding.
I look back now and realize that surgery is not a cure. . there is no "cure". . the damage of 33 years of your spinal cord jamming
into your spinal canal cannot be cured. It just has to be patiently put back together. Tender Loving Care if you will.
In 2006, it was discovered that I had Tethered Cord. The symptoms of Chiari had returned but unfortunately not diagnosed in my
own backyard. I was symptomatic with new symptoms added to the list such as dizziness, nausea, chills, all-over back pain and
many more for about 2 years before I flew to The Chiari Institute in NY for diagnosis and treatment.
Again, I lost time with my kids and family and time at work. But most importantly time with family and no one has a clue as to
what you have. Because, we look normal. No one thinks we would be sick because in your darkest moments - you stay home or put on a
good front - the Chiari front.
I'm still battling these illnesses . . . everyday. But I'm working to get better. I'm working and I'm upright and I'm going out
there and making a difference in my community and that is what counts!
Good Luck to all and I'm willing to help you get better.
Update:
Major changes took place with my life beginning in July 2008, I decided to let go of a very stressful job. I focused on trying to get going on building a
stronger body to counteract the lingering chronic pain that continued from the post-op TC surgery. In October 2008, I began walking on a treadmill for 10-15
minutes a morning at 1.5 miles per hour (that's really slow). Some days were really hard and I would have to stop and not make my legs would quit on me. I
still had pain or what I would call my legs would just decide to be tired or lock up on me. I could walk around and what not but they just didn't like to exercise.
I was determined to do it though. By November, I was up to 25 minutes walking at 3.0 mph and had lost 15 pounds.. Fast forward to February 2009, I am now working
out with a personal trainer, running/walking 2 miles a day at 4.5-5.0/mph on the treadmill and strength training 3 times a week. I am training for a 10K walk/run
in Cody, WY where I live in May 2009 and I will also run our traditional one called the Stampede Run on July 4th.
It's a wonderful time for me right now. I feel as though I have taken my health back and I'm in charge. I feel with the right nutrition, the right medication
which I'm still taking 2 (Topamax and Cymbalta) and the right exercise then the remaining chronic pain that I will probably be left with will continue to be
controlled. Chiari is not a death sentence or a miserable life sentence. It can be experience that strengthens you.
