April 13, 2009---

Hey, there! My name is Janice and I live in Muskegon, MI. My daughter who will be 16 years on July 29, 2009 has been in pain for 4 years. It started out as back pain, then the headaches started. Then the headaches got worse. The back pain got more severe as did the headaches. Then all of the other symptoms started. The shooting burning pain up and down the entire spinal cord, the shooting burning pains throughout the arms, legs, and all through the back. The severe neck and head pains. The extreme headeaches and pressure in the head. Loss of sensation to hot and cold in the hands. Dizziness. Difficulty swallowing. Loss of sleep, not being able to sleep. It's been awful trying to get a correct diagnosis. See, 4 years ago, when I first took her to the doctor for back pain, they dismissed it as "Growing Pains." Then as things progressed, it was "Migraines, back pain, and 'your child just doesn't want to go to school.' " Then came the E.R. visits and the medi-center visits. The shots of a very strong schedule II narcotic - Dilaudid, mixed with Zofran to combat any nausea-- then that only helps with the pain for about 4 hours. I'm so tired. The family doctor sent her for a LUMBAR MRI - seeing that her hips were uneven and they thought that was causing the back pain and the headaches. The Lumbar MRI diagnosed: SYRINGOMYELIA. We then went to see a Neurologist. He ordered a Cervical MRI. It showed mild bulging disk at C5-C6. We then were referred to a Physiatrist (MD., medical rehabilitation Specialist) who diagnosed her with FIBROMYALGIA, after 3 other Physicians (MD's and DO's) said "children that young don't get Fibromyalgia..." --- I had been asking them about Fibromyalgia for 2 years at this point..... I then asked that she be referred to a PEDIATRIC NEUROSURGEON at DeVos Children's Hospital in Grand Rapids, MI. He ordered Brain, Cervical, Thoracic, Lumbar whole Spine MRI's all with and without contrast. They had to use Anesthesia because all the MRI's took almost 4 hours and she twitches and can't hold still that long.
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April 29, 2009 -

Today we seen the Neuro-opthamologist . My child is so sick "in the head," and needs to apparently "see a "Psychiatrist." - And get this -- in one breath, the Neuro-opthamologist said "you have fibromyalgia, syringomyelia, migraines, depression...." and then in the next breath "even though you have severe pain you can still go to school... kids with cancer go to school......."
My daughter and I did not like this Doctor. She odered a bunch of tests, LP, blood work, thyroid, EEG, etc.... and then she said to my daughter: "You need to go to school. To be around your peers, you do not need to be "home schooled." You need to live a "productive life" with the pain..... but all of the conditions you have are causing the pain...."
--- What a witch!!! My daughter and I wanted to punch her. Live with pain... I said "No one should have to LIVE with PAIN...." And, I'm NOT Sorry about homeschooling my child. I know that there are probably MANY SUCCESSFULL Doctors, dentists, etc, that were Home Schooled, and even continued on to College to become Successful! I just wanted to smack this doctor!

My daughter has a visit with the Pediatric Neurologist at DeVos Children's Hospital on July 7, 2009 --- because that is the soonest date they have available. In the meanwhile, My daughter is in Severe Pain and it is continuing to Interfere with her Activities of Daily Living and Functioning, not to mention she has ADD on top of all of this.

So, I took my daughter to the Family Doctor last Monday April 20, 2009--- I went Armed with photographs of the Big Pink and White Blotches ALL OVER Ayme's legs. I had taken them on April 13, 2009. Funny thing, when you touch the areas that are pink, the skin is extremely HOT to the touch, and the areas where the skin is White/much lighter in color, the Skin is a TOTALLY different Temperature!!! I took my research and Evidence to the family Doctor. She was glad that I brought them. I told her what I thought it was. She said "I am sending your Ayme to a Rheumatologist, because they specialize in these sorts of things - autoimmune..."
They scheduled an appointment for Ayme, but she cannot be seen until June 10.... more waiting..............

I am so SUPER frustrated, I just want to scream. Not to mention that I have an Associate's Degree in Applied Science and I've taken Anatonmy and Physiology I&II, Kinesiology, Pathophysiology, and Biology, General Psychology and Abnormal Psychology.... I guess I apparently don't have ANY Medical knowledge good enough for the Doctors or the School....
They seem to think that of ALL of US that are affected by Chiari and Syringomyelia -- that LIVE it everyday-- that we don't know what we are talking about...

My daughter, Ayme, and I did find a free home school (based on the teaching of Charlotte Mason) that is Approved by The State of Michigan, and The North Central Accreditation. It has all of the Curricula that is required by the State of Michigan for HomeSchooling. So, I guess that is where we are now....

Funny thing is, the school and the doctors have all of her medical history for the last 4 years- and they say they don't understand why she is unable to continue to go to school. And the Family Doctor Office said they think they let "the back pain go too long and that something should've been done about it sooner." When the fact of the matter is that her pain and headaches get so severe. That when she has to take her pain meds (3-4 times daily) that she also has to go and lie down and sleep for hours at a time, because of the pain and the meds making her sleepy. A child in High School can't go and lie down to sleep for 3-4 hours every day while at school. Not to mention with the severe head pain and other severe nerve pain, how difficult it is for her to concentrate on schoolwork. She doesn't even get Restful quality sleep at night because the pain wakes her up. And almost 16 year old Ayme is having to deal with the Pain, Headaches, etc. of this dreadful progressive Disease.

I wish there were Chiari and Syringomyelia Specialists here in Michigan-- instead of being all the way in Colorado and New York.

Anyway, that's my daughter's story for the last 4 years. I would very much like to be able to talk with someone who may being having some of these challenges...

Looking forward to hearing from you soon. Thanks for listening.
Janice Visger
jevisger@yahoo.com