It all began with a simple ear cleaning, and ended with two surgeries.
I've always had headaches, and after I had my son in August of 99, I started getting real dizzy, and having more intense headaches.
I blamed the dizziness on birth control pills, because I've never had dizziness before, and I never took birth control pills before
my son was born. The headaches were diagnosed ignorantly by MRI with a neurologist who didn't know about Chiari. I went through life
believing all of this was true for about 5 years. Then my right ear seemed full, like it had wax in it. So I went to the ear doctor
to have it cleaned. He said there was not enough wax to cause that feeling, and I had lost 15% of my hearing in that one ear.
Then he asked me if I ever get dizzy. I said of course I do. He diagnosed me with Meniere's Disease, once again, through MRI's.
Another wrong diagnosis. My sister who already went through several months worth of research, and found out she had Chiari
Malformation 1, was also wrongly diagnosed with Meneire's. So when I told her about my deal, she immediately requested a report,
and films of my MRI. She found where I had Chiari Malformation 1 also. If it had not been for her, I would have gone the rest of
my life with all of these wrong diagnoses, and I would have been miserable, and possibly would have gotten worst.
Today, I have had Tether Cord Surgery, and I am waiting for my decompression surgery. It makes me feel better just knowing what
it is, that is wrong with me, and I can see a light at the end of my journey.
I'm JoAnne Hobbs and I found out that I had ACM type 1 in 2000, after my husband and I were in a motorcycle accident. They had done
a MRI. I didn't have any symptoms therefore the neurologist said that no surgery would be needed. In April of this year, I started
to get these headaches that were in the back of my head and went around the right side of my head. My neurologist that I had been
seeing due to I was having MRI's every year, to make sure there wasn't a change, had put me on migraine medicine and gave me
injections in the back of my head to numb the area. I went back every month with no change. September came and my neck started
to stiffen up and my headaches were getting so severe. I went to a new neurologist, due to this want did really no what else to try.
This neurologist gave me some hope. He gave me strong pain med. and told me that I needed to see neurosurgeon. He also had
MRI's done. I went to three different neurosurgeon with different opinions. Dr. Barth Green in Miami Florida, about
30 minutes from where I live is highly recognized for ACM. I tried to get appt. with him. The soonest was in January 2007.
I thought that if someone was going to cut the back of my head open that I wanted someone that I could trust. October came
and I had to stay in the dark and low noise. Anything would set off a severe headache. I would use ice in the back of my
head and neck, this would relieve it some. My neurologist was happy that I chose that route. He would help me with the pain,
as much as he could with medications. December, I started having difficulty in swallowing and unsteady. My appt. was January
the 8th, and I had surgery on the 18th. I'm headache free and Dr. Green was excellent. He is hard to appointment for, but
well worth it. I still am unsteady, my right leg is weaker then my left. I've been out of work since October. The surgery
and the recooperation is a slow process. My Incision looks very nice, in the back of my head. If you have any questions email me.
I wanted to post because I've been through the misunderstanding
from Dr.'s, the years of pain, and finally a diagnosis and surgery.
I am a 42 yr. old wife and mother of 8( on purpose!!). I
have/had ACM/EDS/TCS/RO. Five of our 8 have ACM, all 8 have EDS a
couple are looking to have TCS and one has a syrinx. Our children
have multiple other serious disorders but that's another topic!
My symptoms began as a child, but when pain is always there, you
don't realise it isn't normal. The headaches that I'd always had
become ugly when I was about 19 and after a workup by my doctor, was
told it was all in my head. That was the end of THAT. I swore I'd
never see another doctor for anything that wasn't visible and
objective. I had symptoms that would really ramp-up after
childbirth, but they all seemed so unrelated, that I never told
anyone. I started having serious hormonal problems in my 20's and
over 10 years lost 7 babies.
Neurological symptoms really started at around 30 and I learned
to live with them until the cognitive issues began and I KNEW
something was wrong. I went to my family doctor and he said I had
too much on my plate with 8 children and his mother raised 8 and when
they left she got her brains back.( I don't blame him because I
didn't tell him all the symptomds because they didn't seem connected
in my mind).
After Our 4 year old was diagnosed with ACM and a thin syrinx I
was a Chiari maniac, learning all I could so we could make good
decisions regarding his care. I read every study, every article out
there. We had a good surgeon and he was conservative so we still
watch and wait with our little guy. We thought about putting him in
the Duke study and the NP asked if either I or my husband had ever
been checked because they were finding a genetic factor in all of
this. It was like getting hit with a 2x4 !!! I had memorized
EVERY symptom after studying for 2 years and I didn't see the forest
for the trees. I had most of the symptoms on the accepted lists.
I know my doctor well and went in and requested a brain MRI. He
ordered it for me because he knew I only came to him when I was
really concerned about something( I'm not a cry wolf kind of
person). Well....big surprise.. ACM and some bone abnormalities. I
saw our sons surgeon and he blew me off and said I had too much on my
plate. By this time I was hyper-reflexic, couldn't navigate stairs
well, dizzy on postural change, had nausea, the cognitive issues were
getting very scary, had central apnea, heart palpitations,
tachcardia, etc., etc., etc !!!!
By now I'd heard of the Chairi Institute and called and was
scheduled for a consultation. I almost cancelled it many times
thinking I'd delt with this for so long why not keep schlepping
along. However, my symptoms were being noticed by others now and
they were concerned.
During this same time period one of our sons had a heart
problem,SVT and had an ablation. We went for a post-op appt. and
were told he had something they just found that was catastrophic.
What a word CATASTROPHIC. We were veteran medical parents but this
was so unexpected we did not know what to say. The short of it was
that he has a connective tissue problem and we had to have all 10 of
us echo'ed. We have two boys with dilated aorta's and were referred
Fast forward to my TCI appt. and the NP who was an angel
couldn't believe our health history. I kept telling her I DID NOT
have EDS and she just laughed at me. Well, when Dr. B got in there
he said we REEKED OF EDS! Dr. B is so good with words!! He told us
more about EDS than any of the several geneticists we had seen. He
wanted us to talk to and meet with both Dr. Nazli McDonnel and Dr.
Clair Francomano. Well...talk about the kindest, most understanding
gals!! They made me feel we weren't this freak show and that yes, it
was all real but they had answers, so for us not to panic.
Again fast forward. I had two invasive tractions and was found
to indeed have cranio-cervical instability. Dr. B also strongly
suspected a tethered cord and screened me for that.It was positive.
A few months later I had a de-tethering then the decompression
and fusion to C-5 in August of 2006. I go for my post-op next
month. The surgeries were not easy but many,many of my symptoms are
gone. The ones that are left I am assuming are EDS related and will
be life-long issues. I am very happy with TCI and respect and pray
for Dr. Bolognese and Dr. Milhorat and Dr. Remy. There are a million
details so if anyone is facing any of this I am more than happy to
answer questions. So many helped me and it made things much easier
with good knowledge from folks who'd been there. Some are still
posting and are now on here. Thanks to all of you.
We do deal with EDS on a daily basis with the children, the
worst stuff being the joint pain, dislocations/subluxations and the
autonomic stuff. The boys with the heart business are watched very
closely by cardio-genetics, and even from far away, Dr. Francomano.
I recommend anyone who is diagnosed with connective tissue problems,
if possible( and I know it's not for many) to see one of the gals who
specialize in it. I have spoken to Dr. McDonnel many times and
actually was diagnosed by Dr. Francomano and they have made all of
Dr. B asked me once to tell my story and make sure I included
the emotional aspect of the surgeries. I must say that was the
hardest part of the post-op period( not to minimize the physical
difficulties, as they were rough). I am not sure why. I still
struggle a bit with a "new normal". Even if symptoms went completely
away, there is still a "new normal" to get used to and it isn't
always easy. I used to be a 100-MPH-gal and now I am much slower and
my stamina is much less. I am happy with the symptom relief but
sometimes I long for the old me, symptoms and all. Stupid huh?
I am a religious person and I can see great good from this
aside from the physical stuff. I always wished I could slow
down...oops...be careful what you pray for you might get it!!!
Alright, I've got a success story. I was diagnosed as having ACM Type 2 with my cerebellar tonsils having descended on both
sides 32mm. My Neurosurgeon said that I most likely had ACM at birth and he was pretty shocked that I had managed to walk
around with it trying to live a normal life for this long into my life. I am 28 years old now.
Now that I think back on it I've had problems most likely caused by ACM for most of my life. I've always been terribly off
balance, every morning I'd wake up to what felt like a killer hang over (I would take about 8 Extra Strength Advil a day,
every day) and I had a mood disorder that nobody could really explain.
January 2006 I started to have problems with my eyes. I couldn't see at all anymore at night. I found that out one night
while driving on a highway with very poor lighting. I actually had to pull over to calm down first and then slowly inch my
way towards the next exit. My Eye Doctor didn't have a clue what was going on and she sent me to a Specialist at the Hospital
here in Ottawa. He also couldn't say what was going on with my eyes but luckily he had minored in Neurology and had thought
I might have had ACM.
He sent me to get my MRIs done and what he found has been explained in the first paragraph.
Through 2006 my balance completely left me. I couldn't walk without stumbling… almost like you were drunk. I would fall pretty
frequently and was lucky that I never really injured myself. My eyesight pretty much left me completely… all I could see were
blurs and colors. I started having problems speaking… I would either stutter horribly or I'd be running out of breath while I
was talking… so… I would… be… talking… like this. My thought processes were pretty much non-existent. I was completely
confused and disoriented most of the time. I was also having horrible spells of anxiety/depression that would last maybe 3 days.
I would go into DEEP depression where I was just flooded with suicidal thoughts to being absolutely wired where I couldn't sleep
and was having panic attacks and would sort of cycle like this every 3 days.
When I met my Neurosurgeon at the beginning of November 2006 and we took a look at my MRIs together he was pretty much shocked
that I was still walking around. Supposedly this could have caused a severe stroke and I was luckily not to have had one by this
point. He had put me down as an Emergency Case and I was in the OR 6 days later.
I had some problems coming out of the Anesthesia that they used during the Operation. I was in the Hospital for an extra 6 days
because I couldn't pee on my own. I, unfortunately, became very acquainted with both a Foley and an In-and-Out Catheter till my
body started to wake up.
I had also found out at this point, since nobody around me figured it was important to bring up before hand that I was not holding
my head up straight for months. It was either tilted completely to the left or the right and this had caused a lot of trauma in
my neck muscles. So I started Physio-Therapy about two weeks before Christmas. My Physio-Therapist said that the Trauma in my
neck was pretty severe and that I would most likely need to be there a few times a week for the next few months. Christmas came
and went and with that my Physio-Therapist had taken a week's vacation and I made make-up appointments with a few other Therapists.
When my Therapist had come back from her Christmas vacation she gave me the usual massage at first to get my neck muscles loosened
up and she just stood there kind of stunned… feeling around… and said "Mike, you have no more Trauma at all in your neck muscles".
I was done Physio about a week later, a few months ahead of schedule.
Right now it's April of 2007. Just about every symptom that I had noted before has left me and the only two that remain are physical
and mental fatigue which I guess should be expected given the shape that I was in prior to the Operation. Since it's only 5 months
after my Operation I'm only expecting that to improve over the next few months and I would have come back from something that could
have pretty much left me a Vegetable if it was left untreated to being about as good as new with a new positive outlook on my life.