Lauri
My symptoms began in October 1991, two months after my first baby was born. Between 1991 and 1995, although I did not have a tender point exam, I was told informally by several doctors that I had fibromyalgia and chronic fatigue syndrome. Then in approximately 1995 or 1996, Dr. Gerald Davidson, a Chicago D.O., gave me a formal tender point exam resulting in a fibromyalgia diagnosis. Dr. Jeff Magaziner at Johns Hopkins confirmed this diagnosis with another tender point examination in the winter of 1999.
My symptoms included:
 | Dull headaches, almost constant pain in back of neck, upper shoulders, and down the spine to mid back. |
| Profound fatigue – disabling and unpredictable. I had to lay down to get through the day. |
| Joint pain in wrist, fingers, knees. |
| “Squirts of pain” in base of neck up back of head – like electric current. |
| “Gurgling sounds” in back of head – annoying and weird! |
| Ringing in ears, often. |
| Chest pain – sternum and in middle of chest, off and on (EKG nonspecific), severe at times, took breath away, elephant on my chest. |
| Achy muscles in thighs and upper arms, calves – like the flu. |
| Cold, clammy hands and feet – anytime air temperature changed or when slightly excited or stressed. |
| Chronic sinus trouble and sore throat – allergies bad in spring too. |
| Fatigue extreme – mental “fog” off and on, couldn’t think clearly or talk intelligently, couldn’t remember things or keep conversation going, had to make lists to remember if I took my meds! Couldn’t follow recipe or handle details. |
| Vision problems – blurriness, clouding over, sometimes couldn’t see at all/couldn’t process what I saw. |
| Bright light was uncomfortable – had to wear sunglasses much of the time. |
| Dizziness - sometimes vertigo with everything spinning, usually unsteady. Terrible when I would move my head. I had a feeling like I was going to fall, floor would tilt, felt as though I was swaying (people told me I was swaying)! |
| High heart rate – diagnosed with POTS (Pulmonary Orthostatic Tachycardia Syndrome). |
| Sudden flare up of mouth canker sores. |
| Dry, crusty rash on cheeks, eyelids, forehead, and chest. Itchy, came and went. Diagnosed with rosacea. |
| Fever of 100ยบ or less – off and on, lasted for days. |
| Weakness in hands – dropped things, usually my right hand. |
| Pins and needles in hands and feet - intermittent. |
| Hot flashes and sweaty upper lip – intermittent. |
| Swollen nodules in left armpit, under left ear and left back of neck. |
| Hips, pain intermittent. |
| Extreme pain base of neck, stiff neck, intermittent. Took muscle relaxants so I could move my neck. |
| Extreme thirst, despite drinking constantly, easily dehydrated, many trips to the hospital for IV fluids. |
| Migraine headaches, severe, vomiting. Took at least 24 hours to recover. |
| Everything worse right before and during period. |
| Bladder – diagnosed with mixed incontinence, other times I couldn’t go when I needed to. |
| Colon – low motility, very constipated, symptoms of obstruction twice. |
| Swallowing funny sometimes – like I can’t get the muscles to move easily. |
| Heavy legs, hard to walk at times. |
In the spring of 1999, I read an article on the internet about someone who had many of my symptoms and had been diagnosed with a Chiari malformation at Johns Hopkins. Eventually, after having an MRI done, I met with Johns Hopkins' neurosurgeon, Dr. Jon Weingart, who read my MRIs and diagnosed me with a Chiari malformation. On May 28, 1999 I had craniectomy surgery performed by Dr. Weingart.
My symptoms today are occasional pressure behind my eyes after straining (shoveling snow) and I still have rosacea and little hive-like bumps on skin occasionally. That's it!!!
Tamara
In the summer of 1995, I was twenty-three years old working for a nonprofit organization in Washington, DC and exploring the city with my friends. That summer I was also fighting an upper respiratory infection that demanded rest and antibiotics. The antibiotics worked but my cough and tiredness lingered. Then, in August of 1995, I awakened with extreme pain throughout my body. I couldn't walk, I couldn't work, I couldn't think. Immediately, I went to the emergency room. After a few tests, the doctors told me I was suffering from muscular pain, suggested I take Tylenol and schedule an appointment with my internist. Muscular pain? I didn't believe the diagnosis. In my opinion, muscular pain occurs when a person doesn't stretch before exercising. It is not the type of pain that takes hold of the entire body, burns, throbs, grips and twists every fiber in your body into knots. Immediately, my mother flew to DC and helped me return to my parents' home in Michigan to seek medical treatment.
In Michigan, I saw a rheumatologist, who diagnosed me with fibromyalgia. Then, I saw Dr. Martin Tamler, a specialist in physical medicine, who confirmed the diagnosis. I started taking medication and returned to my job in October. Still in extreme pain, I searched for a doctor in DC. I was disappointed with my search until I met Dr. Joseph Heaton, an osteopath practicing in Arlington, Virginia. Unlike my other experiences, Dr. Heaton treated my fibromyalgia positively by prescribing nutrition consult and physical therapy. Tricia Ashton, my former physical therapist practicing in Alexandria, Virginia, thoroughly understood fibromyalgia and knew exactly how to treat me.
After months of treatment, my fibromyalgia was manageable and I felt comfortable relocating to Chicago, Illinois to start law school. Over the next three years, I did not practice good posture or other techniques that were crucial to managing fibromyalgia. Consequently, my physical condition took a downward turn. In 1997, I began taking pain medication regularly. In 1998, I was not only experiencing increased pain and fatigue but also migraine headaches, urinary retention, tingling in my hands and feet, weakness in my legs, involuntary shaking, poor balance and concentration, vertigo, and a host of other symptoms. In response to these symptoms I tried to separate my mind from my body by focusing on law school instead of seeking medical treatment. With the support from my family and friends, I was "succeeding."
In the winter of 1999, I realized that I was not addressing my health appropriately and sought medical treatment. I saw a doctor who speculated that I had multiple sclerosis ("MS"), however, my MRI did not show evidence of MS. In October 1999, I visited the Chicago Institute of Neurosurgery and Neuroresearch ("CINN"). At CINN, I met with Dr. Dan Heffez, an outstanding neurosurgeon and compassionate human being. Dr. Heffez ruled out MS, diagnosed me with congenital cervical spinal stenosis and recommended a cervical laminectomy with fusion. Based on his experiences, he said that many patients who were diagnosed with fibromyalgia and cervical spinal stenosis saw improvement or complete resolution of symptoms after surgery. Dr. Heffez, however, clarified that he was not treating my fibromyalgia but my neurological problems. After much thought, research, and talking to others who had the surgery, I decided to have a cervical laminectomy on November 8, 1999.
It has been almost three months since my surgery and the results are outstanding. I no longer experience migraine headaches, fatigue, urinary retention, poor balance, tingling in my feet and hands, involuntary shaking, and vertigo. My overall pain associated with my fibromyalgia has decreased substantially. I remain positive that I will continue to experience such results once I return to work and a normal schedule.
Helen
Dear Friends,
May 22, 2000 Dr. Dan Heffez operated on me for Chiari malformation, to free up the opening for the spinal cord. Since the operation, my FM symptoms have dramatically improved, life is great! What a pathetic person; out of control with pain, wobbling down the airport ramp to board the plane to Chicago to get an operation that so many criticize. I figured I didn't have a choice, I was weak and overtaken with pain, no pain medicine, no help.
My nightmare started October 1984, when I came down with a strange flu that never went away. I had severe chills, fatigue, aching all over, (mostly on the left side of my body and down the leg), and severe migraine headaches. My symptoms would come and go for a few years until a severe storm hit me in 1995. I became so ill that I sat up on the floor with my head on a chair night after night to sleep. The pain was in the left side of my face and forehead, chest and left arm and shoulder. It felt like a knife was stuck through my left eye and I wore a patch covering the eye, which helped. My arms hurt so badly and I went for weeks gasping for air, not sleeping, enduring severe pain and headaches. I found relief from a shot of oxytocin, but the symptoms returned. One doctor thought I had Barri Lou Syndrome, which is a separated muscle from the bone in the chest area. He suggested getting a cervical chiropractic adjustment. This treatment helped; my eyesight straightened out and my headaches were gone! I remember also that my left jaw and eye were pulling to one side. These adjustments helped for about eight months, including straightening out the jaw and eye. After that, I just didn't stay adjusted and I was back to severe pain.
I have been active in a fibromyalgia support group here in Spokane, Washington since 1989. Rae Gleason from the National Fibromyalgia Research Assn. invited me to attend their research conferences. It was at the 1999 meeting that I heard Dr. Michael Rosner and Dr. Dan Heffez define Chiari malformation and spinal cord compression. I spoke with Dr. Heffez and he said he would read my latest brain scan and call me if he saw something.
After a complete neurological testing regimen at the Chicago Institute of Neurosurgery and Neuroresearch (CINN), Dr. Heffez told me I have a Chiari malformation and fifth vertebrae problem, resulting in my May 22 surgery.
I am several months out from Chiari surgery and I will tell you, my symptoms of fatigue, headache, irritable bowel, sleep disorder, weakness in the limbs, OUT OF CONTROL PAIN, and concentration, are dramatically improved, if not totally dissipated. I do have stiffness problems, my left eye weeps and is very weak, and I have numbness in the left part of my face, but overall I consider these symptoms to be trivial compared to before surgery.
I am so thankful to the National FM Research Assn and Dr. Heffez! Research is underway to determine the role spinal cord compression plays in the large society of FM/CFS patients. Is FM really spinal cord compression? Time will tell.
Life is great!
*Helen is the President of the Inland Northwest Fibromyalgia Association in Spokane Washington.Leslie
I was very athletic and active in swimming, water-skiing, snow skiing, biking, and gardening. I was pregnant seven (7) times and have four (4) children. After the last pregnancy at age 30, I began experiencing IBS (Irritable Bowel Syndrome). My records show Hepatitis B. I had two (2) sinus surgeries when I was 33. I had a hysterectomy at 37 years of age and had a spinal anesthetic. This is when my neck pain started. My positional sitting in front of a computer and holding the phone between my ear and shoulder made pain worse. When I was 39 I had a facet block (spinal injection). This is when my pain flared to limits of severe and my life became dysfunctional. I was diagnosed with fibromyalgia even though I had an MRI from 4 years’ prior that showed specifically Chiari Malformation I. I was misdiagnosed and treated for fibromyalgia. I was prescribed heavy pain medications, anti-depressants and sleep medications with no relief. In October 1999, I sent my MRIs to Dr. Dan Heffez at the Chicago Institute of Neurosurgery and Neuroresearch, and on May 11, 2000 I underwent Chiari surgery.
The following are my pre-surgical symptoms:
| Neck pain - severe (pain point in spine) |
| Neck pain traveled down left arm |
| Arms falling asleep and numb |
| Hands hurt so bad, had to wear wrist braces 24 hours a day for 6 months |
| Foot pain severe – could only wear slippers |
| Buttocks hurt very badly |
| Cold drip feeling down my outer thigh |
| Feet and hands cold all the time |
| Body temperature off |
| Sleep deprivation – severe, did not sleep for 16 months |
| Irritable Bowel Syndrome – gas, bloating, pain |
| Elbows and knees very sore – unable to climb stairs |
| Short-term memory problems |
| Anxious and irritable |
| Severe depression |
| Fatigue |
| Blurred vision, eyes burning, eyes jumping, hard to read |
| Voice very hoarse; always trying to clear throat |
| Fluid in left ear |
| Body becomes very stiff when in one position for short period |
| Sinus problems – 2 surgeries in 1991 |
| Severe face pain – teeth area |
| Panic attacks |
| Intolerance to loud noises; get confused |
| Muscle spasms – all over body but mostly in neck and upper back area |
| Tremors; dropping items |
Listed below are my post-surgical symptoms:
| Pain points in neck, arms, hands, feet, and headaches still present but nowhere near as severe |
| Feel stressed very easily |
| Sleep problems still present but now receiving more sleep |
| Stiffness still occurs when in one position |
| Short-term memory – still bad |
| Fatigue |
| Irritable Bowel Syndrome – not as severe |
| Depression – not as severe |
| Eyes burning; bright light problems |
| Intolerance to loud noises; confused |
I still have a number of the symptoms that I had prior to surgery but the pain factor has improved tremendously. This has been my biggest improvement. I still have pain but at least now medication can help keep it under control. I consider myself to be one of the successes.
Sharon
My 54th birthday was one I will remember for the rest of my life. October 29, 2000 was the day my life turned a corner. CINN called that day and confirmed that I did, indeed, have Chiari Malformation.
In the spring of 1990 I recorded in my journal, “I have developed a very painful condition this spring in my neck and shoulders.” It was the beginning of eleven years of extreme pain, frustration, anxiety, and an exhaustive search to find an answer. After about two years my family doctor finally diagnosed me with Fibromyalgia and Chronic Fatigue Syndrome. His words to me were, “The good news is I now know what you have. The bad news is there really is no cure for it.”
Over the next few years I went to over 15 different doctors and specialists. I was tested for Cancer, Lupus, MS, Graves Disease, Rheumatoid Arthritis and diseases I can’t even pronounce.
In July of 1994 I drove to my office with my head hanging out the window so I wouldn’t fall asleep at the wheel. When I got to my office and turned the computer on I could tell there were words on the screen but I couldn’t make my eyes focus to read them. I shut my computer off and went home and promptly went to sleep for several days. The company I worked for at that time sent me home and told me to get well—they would take care of me. Their idea of taking care of me was to force me to see a psychiatrist for 10 visits and insisted that I pay for half of it. The psychiatrist looked at me and said, “What do you think is wrong?” I wanted to reach out and wring his neck.
In November of 1994 I returned to work on a part time basis. In April of 1995 I had to quit. It was 1 ¼ years before I was able to return to work and I spent most of that time searching for an answer. I tried every herb and natural remedy that anyone told me would do some good. I went for acupuncture, chiropractic adjustments, massages, and osteopathic manipulations as well as spending countless hours in doctor’s offices trying to find anything at all that would help. By the time of my surgery in January of 2001 I was on ten different medications. I had been on painkillers for at least five years. Without them I would have been in bed all of the time instead of just a whole lot of the time.
I had pain in every part of my body. I was dizzy, nauseated, had ringing in my ears, hearing loss, blurry vision, headaches, irritable bowel syndrome. My memory was so bad I had to write everything down. If I didn’t—it was gone. I had whole conversations disappear. I was so absolutely exhausted that in order to get up in the morning I would picture a rope beside my bed. I would visualize putting one hand over the other to pull myself out of bed—much like climbing a rope in a gym.
In February of 2000 my daughter went to work for a company in Salem, Oregon. She called me one day very excited. She said, “Guess what Mom—the company I work for sponsors a Fibromyalgia research association. I am sending you a big packet of materials.” A few days later she called and said, “You have to watch 20/20 this Friday night. They are talking about a possible cause for some people’s Fibromyalgia symptoms. It is called Chiari Malformation.”
As I watched the program that Friday night, March 6, 2000, something spoke to my heart, and I knew I had found my answer.
The next week I was in my specialist’s office asking for an MRI. He discouraged me but told me in order to make me feel better he would order it. A few days later he called and said they were seeing a Chiari Malformation but no brain compression. A few days later he sent me an article out of the Wallstreet Journal that very much disparaged the surgery. I visited with my family doctor. He was also very cautious.
My feeling was, “What have I to lose? Nothing else has worked.” I sent my MRI’s to Dr. Heffez and began the long wait—several months long.
During those months I got much worse. I remember very vividly thinking, “It would be so much easier to just close my eyes and not wake up. But if I did that who would buy Christmas gifts for the grandkids. I’ll keep going.”
On October 29th, the call came. I was so excited I called all my family and told them how thrilled I was that I was going to have brain surgery. I was so relieved that there really was an answer—I wasn’t crazy, I wasn’t a hypochondriac, there was a legitimate reason I had felt like death for eleven years.
On January 10th I traveled to Chicago. When I got to the airport my flight was canceled. At the very last minute we got on another flight. My husband stood by the window to make sure the plane got off and heard one of the airline employees say, “It makes me so mad when people are late—what they really need is brain surgery!” The other person working with her said, “That is exactly where they are going!”
After two days of testing I was operated on the morning of January 15, 2001. As I was coming to I heard my husband say, “Oh honey you are so pink!” For several months I had been gray—I just couldn’t get any oxygen.
I would never suggest this is an easy surgery. Dr. Heffez warned me that it was a rough surgery and a rough recovery. He was right. But living with the symptoms I had was pretty rough as well.
It has now been three months and I feel wonderful. I no longer have headaches, dizziness, nausea, irritable bowel syndrome. I had a hearing test the month before surgery. I was losing a lot of hearing in all ranges. I was tested two weeks after surgery and my hearing was back 100%. I wake up at 6:30 in the morning feeling good. I can shower, dress, do my hair and put my makeup on without sitting down. That hadn’t happened for a long time. I walk about 1 ¼ miles a day and have started working out again on my Total Gym. I don’t head for the bed every time I walk in the door. I never take a nap during the day. In fact in less than three months I was back at work and loving it. I actually have enough energy after work to go to the grocery store without having to ride an automatic cart around.
I still have some pain in my mid back but little by little it is lessening as I strengthen those muscles.
I think my husband summed it up very well when we went to see Dr. Heffez on my follow up visit. He said, “Dr. Heffez I want to thank you with all of my heart for giving me back my wife.”
I thank Dr. Heffez for giving me back my life. And thank you to the people from the NFRA for directing my path to his door.
