Saturday, September 27, 2008

Meet Bridget Cara Smith

SYRINGOMELIA

Yesterday I laughed.
Today I cry.

Yesterday I ran.
Today I walk.

Yesterday I played.
Today I watch.

Yesterday I whined.
Today I speak.

Yesterday I danced.
Today I read.

Yesterday I laughed.
Today I think.

Today is very DIFFERENT from yesterday.

Bridget Cara Smith
03/01/02

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by Dr. Vann Arthur Smith

Bridget, now 15, resides with her parents in north central Arkansas. When she was 5, she moved with her family from suburban Chicago where she was born ( Lake Forest).

Always a very active young lady, Bridget enjoyed ballet, bike riding, swimming and golf. Her first love has always been, however, reading and school. Her career goals have always centered around the practice of medicine.

On April 10th, 1999, Bridget and her father were visiting one of the many scenic caverns located in the Arkansas/Missouri Ozarks. As the tour began, Bridget stopped along the elevated concrete pathway, which leads down to the cavern entrance, to listen to the tour guide's commentary. As her father stepped up to join her, the corrugated pipe, which served as a hard railing, gave way in his hand, causing both Bridget and her dad to lose their footing and fall some 10 to 12 feet down the hillside.

Bridget's lower back struck a large rock. She was transported via ambulance to the local medical center some 20 miles away. An initial series of x-rays and examination by emergency room physicians showed no evidence of fracture or internal injuries. A large, pear-shaped bruise developed in her lower back, and she was in pretty severe pain for the first couple of weeks. Visits to her primary care physician and an orthopedist yielded a diagnosis of "soft tissue injury," and she was referred to physical therapy.

Her response to the PT was quite good overall. As weeks went by, Bridget started experiencing pain in the "center" of her back and occasional "funny feelings" in her legs. (She would report "woozily" feelings in her legs when she tried to stand.) This continued into the summer, and it became increasingly clear that something was wrong, and it was not "just soft tissue pain" as her physicians kept assuring her.

In July of 1999, with the symptoms now constant and Bridget's pain level increasing with virtually no response to analgesics, Bridget's dad insisted (over the protest of orthopedists who still maintained that her discomfort was somehow "exaggerated") that an MRI be done.

As the MRI images began to emerge on the computer screen, a 4 cm "candle flame" shaped lesion came into view. A complete MRI series including brain and brain stem and full length of cord was done (including contrast studies), effectively ruling out Chiari malformation, tethered spinal cord and tumor. The diagnosis was "post traumatic syringomyelia" caused by her fall at the caverns.

Bridget's parents scheduled an appointment with a pediatric neurosurgeon at the Arkansas Children's Hospital, praying that she would soon be under the care of skilled and experiencing caregivers. Upon arrival at Children's Hospital, the neurosurgeon (accompanied by his residents) entered the room (with a flourish) and informed Bridget and her parents that surgery would be scheduled for the next day. When asked, "What surgery was being planned?" the surgeon replied, "Why, to fix the Chiari malformation, of course." Somewhat surprised, Dad points out that no CM was found on the MRI study. The surgeon, apparently not accustomed to having parents speak during these "meetings," said, "Well, we have to fix the tethered cord." Once again, Dad, and now Mom also, pointed out that no evidence of tethered cord was found on the films either. Now appearing somewhat flustered (and perhaps embarrassed in front of his students), the surgeon replied, "Tumor has to be ruled out." Again, referencing the "contrast" MRI study which indicated no tumor, Dad asked the surgeon if he had, in fact, reviewed the MRIs and reports from Bridget's physicians. His response was, "No neurosurgeon listens to anything a radiologist has to say anyway." Frustrated, Bridget, Mom and Dad returned home.

Bridget's pain continued to worsen and she began having near daily headaches. The orthopedist was once again consulted and was told of the meeting with the neurosurgeon. He told Bridget that he was "sure her pain wasn't related to the SM" because "those things can't hurt," and besides, "it's only three inches long."

For the next several weeks, a competent physician with knowledge of spinal cord injury was sought. Finally, an appointment was scheduled with a physiatrist in Springfield, MO. By this time, Bridget was totally frustrated and tired of the constant pain, which she was being told was "stress" because, perhaps "problems with school work." (Bridget is an A and B student and really wants nothing more to do with doctors who dismiss her totally.) Meeting this doctor was an absolute godsend. He put Bridget at ease completely, as he accompanied her to the examination room in his wheelchair. He is, it turns out, a paraplegic who sustained a spinal cord injury in this teens. Completing his education, he is, among other things, a pilot and is a nationally recognized expert in cord injury and rehabilitation. Bridget absolutely loves him and his concern for her is absolute.

Bridget's pain continues in spite of an array of prescription medications (neurontin, ultracet, paxil, limbitrol), ibuprofen and a TENS unit. Her activities are restricted (lifting, bending, twisting) so she no longer can participate in ballet, bike riding, golf, etc. Her school performance remains excellent (A's and B's), and her goal now is, not surprisingly, to become a physiatrist so that she will be able to "help kids with spinal cord injury" get treatment from someone who "knows what they're doing."

Bridget's case was reviewed by a neurosurgeon from Chicago Children's Hospital, and the decision was made to defer surgery until and unless she begins to experience paralysis, bladder problems, muscle atrophy, etc. In the meantime, she continues her care with her physiatrist and undergoes repeat MRI studies at six-month intervals to monitor the size of the syrinx.

Bridget has remained amazingly resilient throughout the past five years. Her pain is, clearly at times, overwhelming, and yet she quietly goes about her business (homework, reading, surfing the "net") and now communicates with other young people on the ASAP listserv.

The most devastating part of this whole ordeal for Bridget has been the loss of her "friends" at school because, in their view, she "should be over this back thing by now." The contacts she has made through ASAP have been more helpful than all the medicines combined. (Her mother and father are more grateful than words can express!)

1 comment:

GavinC said...

Hello Bridget, I live in England UK. I too suffer from a similar condition. I sustained a fall in a horse riding accident 12 years ago. Ten years ago, I developed the same symptoms as you and had lots of difficulties getting the matter correctly diagnosed. I thought I was going mad because no one seemed to understand or believe me. Eventually a MRI scan revealed the presence of an expanding syrinx. I was warned of the risks, but I agreed tospinal cord surgery to drain the syrinx. It was carried out by a world famous neuro surgeon called Peter Teddy who is now professor of surgery the the University Hospital in Melbourne, Australia. (Check it out on Google.
It was a tremendous success, and one month later, I was running again, riding my motor byke, mountain climbing and high board diving. I had 10 years of trouble free life. Recently, the syrinx has started to show signs again, and the pain has returned, my mobility has started to detiorate once again. MRI scans show the syrinx expanding yet again.
I have decided to go for surgery once again- in spite of the known risks. Its booked for 14th October 2008. I shall let you know how it works out. In the meantime, you could wish me luck. I shall be thinking of you too. Dont give up Bridget. Have faith- everything is possible.
Gavin.
gavincaspersz@glasswa.com