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Kathleen Hartman writes:
My symptoms didn't truly manifest themselves until I was an adult. In 1976, I went to an opthamologist for a routine eye exam. During the exam, he noticed a downbeat nystagmus in both my eyes. By this time, I was also walking with an awkward (I'm being polite!) gait. He sent me to a neurologist, who promptly admitted me to the hospital for 10 days of tests and observation--after a CT scan, 10 days on prednisone drip, a spinal tap, too many x-rays to keep count of, and various other indignities, he told me "The only way I can find out what's wrong with you is to take your brain out and slice it up". He said there was some deteriation of the myelin sheaf, but did not give a diagnosis of MS. I was 24 at the time.
I basically gave up on docs after this. My symptoms got progressively worse--by 1989 I was unable to climb or go down steps, was having choking spells, walked into doors and walls all the time, and generally walked as if I was drunk. Some people thought I had a hip problem--others wondered what my disability was. In November of 1988, I went to an ear doctor. My complaint was ringing in my ears--the diagnosis was tintinitis. Fortunately for me, the doc was also a neurologist and noticed my gait. She sat down with me and we talked about my symptoms. She ordered and MRI, which was done the next week. She called me at home and said "Kathleen", I know what's wrong with you". She then proceeded to tell me about the Chiari malformation and that she had set up an appointment with a neuro-surgeon. The same week I saw Dr. Paul McCombs, and on Friday, January 13th, 1989, I had decompression and laminectomy of the 1st and 2nd cervical vertebra.
The results after two days in ICU, were immediate and dramatic--I was walking better the first time I got out of bed better than I had in years. I could "tell" that I was better. I was in the hospital for 6 days, and spent one month at home recuperating. I went back to the State library, where I am a cataloger in March of 1989 and have been here ever since. I now walk up and down steps (sometimes even without a handrail!) I joined the choir at church, and am now also singing with the Nashville Symphony chorus. This summer, we toured and performed in Moscow, St. Petersburg, and Berlin. Before the surgery, any of these activities (and also driving) would have been impossible. I am now leading a full, normal life, and have been able to be both an active and effective mother to my son and wife to my husband. I consider my visit with the ear doctor in 1988 and the resulting diagnosis and surgery a modern miracle. I would be happy to hear from anyone interested in more details. My E-mail address is:

Lauri Hogle's success story: 

It's been eight months exactly and I am thrilled to report that I have experienced total healing since my chiari surgery!  For nearly eight years, I was incorrectly diagnosed with fibromyalgia and chronic fatigue syndrome.  I also had the horrible headaches and neurological symptoms such as blurred vision, dizziness, numbness in extremities, weakness that told me there was something more wrong.  My symptoms began two months after my oldest daughter was born, after having an epidural and long labor.  I was completely healthy and very active prior to that.  
   My MRI scans over the course of the illness were always read as normal, except indicating degenerative arthritis in the cervical area.  WRONG!  I was diagnosed with Postural Orthostatic Tachycardia Syndrome, a form of dysautonomia in the spring of 1998 and one year later, learned the cause of all of it - chiari malformation.  By that spring, I was unable to walk without a walker, unable to stand and sometimes sit without coming close to or actually fainting, experiencing hours of blindness at a time, and having trouble with my heart, colon, and bladder.  It was an amazing miracle because I was diagnosed correctly in answer to intense prayer, through a source on the Internet!  
  When I found out about chiari and was diagnosed, I couldn't wait for the surgery!  After surgery with Jon Weingart at Johns Hopkins in May, 1999, I awoke being able to see, with no dizziness, a clear thinking mind for the first time in years, and a slower heart rate.  All of my symptoms, with the exception of rosacea in the skin, have disappeared and remained gone!  I thank and praise God for the miracle He provided to me, my family, and thousands of others who have seen my story in the media.  I hope and pray that others do not have to endure the torture of misdiagnosis and pain that I went through for those long, long years.
Lauri Hogle, ACM 1, decompression surgery May 1999

Dorothy Hardy writes:
Brooke was in surgery 7 hours. The surgeon did a decompression, laminectomy of C1 and a dura graft (using skin from her scalp). She ate Cream of Wheat that evening and insisted the next day we clean the surgical stuff out of her hair. After 24 hours she left ICU and after a total of 3 days she went home.
After a recovery period of 2 weeks she went back to school. Her headaches are gone, and some of the sensations on her right side have improved. She is 18 months post op and seems to be doing fine. She does get some headaches, neckaches, but nothing like preop. There are some learning issues that I question, but I feel that her surgery was definitely a success. If I could have changed anything, it would be to have done it sooner, but it is very hard to decide on brain surgery very fast.
Dorothy Hardy , mother of Brooke ACM1,  hydromyelia,  syrinx

Sally Reusser writes:
I am an ACM patient. Six years ago at age 44 I went, in a months time, from being an aerobics instructor, to being bedridden! I experienced most of the "standard" symptoms.. headaches that wouldn't quit, dizziness, vision problems, blackouts, general malaise, drop attacks, vomiting, etc. All of this was attributed to a severe sinus infection, by SEVERAL, professions that I dealt with. It was treated accordingly! Needless, to say, the results were not good. Finally, when I developed grand mal seizures and had to be taken to the hospital by ambulance, other concepts were considered. Probably a neuro problem.. Duh!!! After a C-scan my friendly neighborhood neurologist announced, almost gleefully to my distraught husband, that he had found the problem! A tumor in the 4th ventricle! Not necessarily, great news to us!
Wrong again.. Fortunately there was a new neurosurgeon in our hospital.. my current nominee for sainthood.. who felt the symptoms were not those of tumor, and ordered other tests. MRI,etc! Sure enough.. ACM and with hydro. thrown in as a bonus.
Ooops, the success part!! Seriously.. with surgery (8 hrs. initially) and the later addition of a shunt.. I went from totally out of it ( had 3 seizures during the first MRI. It took them forever to finish it!) to now, where I really feel that I have a VERY good quality of life. I hesitate to say normal.. there are a couple of little deficits.. but nothing that can't be fairly easily compensated for. I do essentially everything that I was ever able to, including to continue to play competitive tennis, with good results. I've resigned myself to no bungee jumping, but such is life. About the only things I have really eliminated are horseback riding (the possibility of a fall on the shunt area is too great) and amusement park rides( just really don't feel great!) My feeling is.. if these are the main changes in my life.. it has been a success! Granted I get tired a little more easily and the short term memory is not what it used to be.. but these are also complaints of friends in the same age group, so who knows?? Following is my email address, and I would be glad to answer anything I can, or just talk about this "fascinating" topic!!! Sally Reusser Bethlehem,Pa.

The Confessions of a Non-Decompressed Chiarian
(i.e. I am living successfully with my ACM)
My name is Bernard H. Meyer and I am 56 years old. I was diagnosed with ACM Type-1 in 1990. It was detected after I had a number of balance problems and semi-dizzy spells after bending my neck. The doctor recommended a MRI. The first MRI found it. The second MRI confirmed it. The GP who ordered the MRI knew very little about ACM and sent me to a neurologist. I was in a major panic thinking it was akin to a brain tumor. The neurologist recommended no surgery. He recommended drugs and a MRI every six months. The guy was very unprofessional and gave the impression he was not real familiar with the problem. I got a second opinion from another neurologist who recommended surgery. He said it was simple surgery. So I saw the surgeon he recommended. Bright guy who set me straight!!!!! The surgery was not simple and the success rate was not very high. He suggested I live with it and I am living with it quite well at the moment. Headaches were never a problem. I still have some balance problems going down steps. As long as I hold on to railings I have no problems. I use elevators when I go shopping. None of the doctors told me how long the herniation was and I was not smart enough to ask at that time. It must be mild i.e. under 7 mm based on my mild symptoms.
Tinnitus has been a problem for 25 yrs. The doctors, probably about ten over the years, that I saw about this condition could give me no reason for it. However, based on the symptoms posted by other Chiarians and recent medical publications, the tinnitus is caused by the ACM. The tinnitus and balance problems are becoming less noticeable this year probably due to my body acclimating to the condition and my life style changes. I follow most of the symptom alleviation methods published by WACMA.
I have purchased a medical alert bracelet. ("Arnold Chiari condition - causes balance problems"). Also I drive only when I have to due to somewhat reduced coordination although my driving skills are probably better than most people on the road. I have not seen a neurologist since the neurosurgeon told me to go home and live with it seven years ago. My GP is aware of my problem. As typical with ACM, I am the only Chiarian he has ever seen and he knows very little about the condition but he believes me based on my MRI's and the WACMA information I give him.
Is my condition inherited or acquired?? Good question. My father died when he was 87 and had no ACM symptoms. My mother is 94 and shows no signs of ACM. Our three children, 26 , 24 and 21, do not show any real ACM symptoms. Our 24 yr old son has always had some problems swallowing but this might be sinus related. I believe my condition was acquired due to too much high school football, weight lifting and tennis (hard neck jerking serves).
The condition did not affect my learning abilities as I have a PhD and MS in polymer science and a BS in chemical engineering. I took early retirement last year. This was an excellent choice as it removed a lot of mental stress.
If you are interested in more details, e-mail me at anytime and I will get back to you asap.

Gregory Holt writes:
April 4, 1995. I was admitted early in the morning to St. Mary's Hospital in Rochester, Minnesota.
Finally, I was moving to the operating room. Nerves were tense. I went in for the four hour surgery very nervous, and my parents felt about the same. The surgery was to last 4 hours, and it is called a suboccipital craniectomy, upper cervical laminectomy of c-1 and c2, cerebellar coagulation, duraplasty.
I made it through. In the intensive care unit, they woke me up every 10 minutes to see if I could move my fingers and toes, and also had me breathe in a special machine to keep me from getting sick, but I did anyway. I was there for about 24 hours, and then was moved to a private room on the neurology floor.
That is where I recovered, and enjoyed the fine cuisine. That was part of the cause of the 11 pound weight loss. During recovery, I had many bad feelings, including nausea, loss of feeling in the arms, double vision, and a swallowing problem. To most of these, the doctors said, "That's strange, but don't worry about it." Boy, was that comforting.
The scar on the back of my head is what I have to tell stories about for the rest of my life. Not a haircut has gone by where the stylist hasn't asked "What's that on the back of your head?"
I returned home 7 days after surgery, and spent two weeks there until I returned to school full time.
The headaches are gone, but I have also received an extra surprise from this surgery recovery. So now I am pretty much back to normal, very happy to be alive, headache free, and ready to play some b-ball in the summers.
     Gregory Holt

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