Even More! Success Stories

If you have a Chiari success story that you'd like to share, just CLICK HERE and send it in !

Hi I'm JoAnne, my problem started the beginning of 2006. I started to get headaches in the back of my head, and neck. They would come and go. I have had trouble with facial spasms - the right side for years. I found out that I had ACM when we were in a motorcycle accident. I had hit my head a cement. I had a MRI done in emergency room. They had sent me to a neurologist in 2000. The doctor said that I had Arnolds Chiari Malformation Type I. That I was born with it. The cyst is 10mm. The neurologist said not mess with it, due to not causing any problems. I went to see a new Neurologist in April, he ran more MRI's, confirmed with the above, and also that I had a syringomelia in the thoracic area. 

My headaches were worse in the evening, light and noise triggers it. The doctor gave me migraine meds. and shots in the back of my neck. The shots numbed the area, but by 30 days, I was back for more shots. The migraine med. did not help. In September I went for a 2nd opinion- this doctor gave me strong pain med. that did give me some relief. He referred me to a neurosurgeon. By this time I had to stay in my room where it was dark. I had to take time off from my job. The first one, he looked at my MRI's and told us that I did need the surgery. He would not give us the time to ask questions. I started to get severe neck pains, shooting pains. Also difficulty in swallowing by November. My husband and I went for a 2nd opinion, this doctor said that I didn't have enough symptoms. To come back in 3 months. My husband had done some research and found Dr. Green from Miami. 

This doctor specializes in ACM. We made an appt. the wait was long to see him, but it was worth it. He took his time. He explained everything. I had surgery 1/18/07 at Jackson in Miami. My hospital stay was 8 days. I had a spinal leak, which they had to do a blood patch. I do not have any headaches, or neck pain. I can eat without any problems. I did lose weight there - at least 13 pounds. I'm not going to lie, it did hurt, but look at the success. I have a little problem, my balance is off with walking. I hope with therapy this will go away. Good luck to all! Jo Anne Hobbs, looking ahead 2007

My name is Kathleen Grigg, I was diagnosed with ACM in 1990.  My diagnosis was quick.  It took 6 months of referrals, and finally the referral to the Neurosurgeon. At the first appointment he thought that I may have an aneurysm, sent me for an MRI that day and I had a decompression done within the week.  I had a normal Suboccipital Craniectomy, laminectomy C1.   One month later I developed hydrocephalus and had to have a VA shunt.  The shunt is still doing its job 8 years later.

A short time after my decompression, I was diagnosed with migraine headaches.  I was always suspicious about the diagnosis, but went for treatment anyway.  I have been seeing a wonderful neurologist for 8 years, that has been willing to change meds every time the headaches would get worse.  Even with medications, I would have 2-3 severe headaches per week.

In August of 1997, I fell and hit my head on a rock.  My headaches were a 24 hour variety and didn't go away.  My local doctors tried everything, did every test, and exhausted possibilities.  I had found the WACMA site shortly after my fall and was becoming more educated every day.  At that time doctors threw up their hands, I started asking for referrals.  My neurosurgeons thought that the first decompression was a success, and they were dragging their feet about a referral to Dr. Milhorat.  I persisted, and off to New York we went.  It only took 8 years for my second diagnosis!

Dr. Milhorat proceeded to tell me that I wasn't decompressed enough, that my first surgery was perfect according to todays text books.  I had a super sinus decompression done on June 23.  I had some problems with the dura and a spinal leak, while I was in the hospital.  Due to the pressure over the years on the skull and dura, they had thinned.  Dr. M was able to stop the leak without another surgery.

I am currently 5 weeks post op.  I have not had a headache since we returned home.   That was my major complaint.  I still get a little dizzy, Jeff (my husband) loves it when I grab his arm.  I am careful when I eat and drink, I still don't have a gag reflex and I don't know if that will come back.  My neck is a little bit stiff.    These are all things that I believe will go away with time. 

As I walked through the flea market today with my husband, it dawned on me that I feel 8 years younger.  People that I have known for a couple of years are shocked and say my eyes sparkle.  People that I have only talked with on the phone can't recognize my voice.  I have an energy that I haven't felt in so long, that sometimes I just want to yell out the window and tell everyone how good life is. 

There is success out there.  After the past year, I would have taken my life back at 2-3 headaches a week.  Instead, I have learned from this experience, and it has made me stronger.  Always keep looking for that right answer!  grigg@clinic.net

Katie's story, told by her Mom, Ginny.

Katie is a bio-chem pre-med student at SMU in Dallas. She's petite, blonde, very bright, and highly energetic. When she was in high school, she was drum major of her high school band. She began complaining about arm pain while directing.  After some time in college, it was both arms, one leg, daily headaches, neck aches, blurry vision, chest pains and  breathing difficulities. Right before surgery, she was driving her car   to class, carrying in one book at a time, having the big doors opened  for her, sitting next to a plug for her heating pad, taking daily Codiene and Neurontin. She had surgery the end of May for AC type
one with a syrinx.
Today, all of her nerve function has returned, and is actually better than it ever was. Her hands just fly on the computer keyboard.  She has no pain in her head, neck, back.... Since the one day she was in ICU, she has taken only two Advil--once. Four days after surgery, she packed herself, and she walked out of the hospital and across the parking lot to the car. Her vision is super. She reads quite a bit faster than before. Three weeks after her surgery, she began 12-14 hour days of a sort of an internship/volunteer position at Medical City hospital. Some days she doesn't even stop for lunch.  After she comes home, she goes out with her boyfriend, goes shopping, or goes ice skating.  In addition, she now has a sense of smell which she never had before. It's fun to observe a teenager smell cooking steaks, roses, Pledge... for the first time.  I attribute her recovery to answered prayers, and answered prayers through finding the right doctor for her.
She had decompression surgery with Dr. Derek Bruce who works out of Medical City and Children's in Dallas, Tx. He removed her tonsils instead of using a dural patch.   (There is no patch to leak, get infected, be rejected...)  He took off the back of the top vertebrae. Oh, also, he didn't even shave her long, thick hair. He parted it, and put two braids it in the operating room before surgery. He worked down the center of the back part.  Her MRI's after surgery and the spinal fluid flow looked completely normal.  The syrinx was half gone in three days. She will have a series of MRI's in 6 months, in 1 year, and in 2
years, and then she is released for good. Dr. Bruce is on the list in the book from the support organization ASAP.  We think he is wonderful.
I will be very happy to talk with anyone on the phone, by E-mail... If you decide to come to Dallas for an opinion, please, please let me know so I can meet you and help you in any way I can.  Thank you to those of you who responded to me, and gave me encouragement.   Let me hear from you.
God bless you all.       Ginny (Katie's mom)     mjarvis@startext.net

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