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Thread: 25 yr old daughter with spinal hemangioma C3-4

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    25 yr old daughter with spinal hemangioma C3-4

    Hi, I thought I would join to share my daughter, Lindsey's, story and to learn more from some of you here.

    Lindsey started having numbness in her left hand last summer. She went to her primary care physician, who suggested that she "had a pinched nerve, get a massage". Well, at least her technical diagnosis was correct!! She went on with her symptoms, though she started having more weakess in her left hand. Around Christmas time she started noticing numbness in her left foot and "stabbing pains and the worst sunburn feeling ever" all the way around her torso. Back to the doctor, then urgent care, then the emergency room. "Might be MS" was the only suggestion. She finally got an appointment with a neurologist who ordered an MRI. There plain as day was a "growth" spanning her spinal cord adjacent to C3-4. He referred her to a neurosurgeon, who never called her back, for what she understood as "some radiation treatments", we think that was gamma knife (not for this though). She finally got in with a neurosurgeon who recommended surgery that would be "life changing".

    We sought a second opinion and selected Dr. Ellenbogen, Chair of UW's neurosurgery department. Lindsey had an neuro angiogram on Feb 18th and it was determined the growth was a cavernous hemangioma. Lindsey coaches a 4A high school dance/drill team. March is their competition season and she had the surgeon convinced her surgery could wait until after the season. After we thought about it and she had continuing onset of symptoms, numbness in her right foot, she decided on surgery sooner instead of later.

    She had surgery Feb 26th at Harborview Medical Center in Seattle. Cervical laminectomy of C3 and 4 for access to the lesion. Immediately after surgery the doctor said he thought he would be happy with, "breathing and motion on one side", but she initially had motion in all limbs that he described as "amazing". He carried out before and after pictures, the after showing a hole in her spinal column which allowed you to see through it to the front side. In the next couple of days the surgeons told us they were "hopeful" of a full pre-op recovery, though Lindsey also suffered total loss of feeling on her right side and additional weakness on her left side. Brown-Sequard??

    She stayed two days in neuro ICU and was moved out onto the post surgery floor to wait for a room on the spinal rehab floor as she is now being treated as a spinal injury patient. The first rehab assessment on Fri Feb 27th was "I think you might walk, you have a score between a C and D". Does the score go to 'F". He didn't bother explaining the ASIA scale and was blunt with his assessment.

    Lindsey was moved to rehab Mon evening Mar 2nd. Tues she wasn't able to get out of bed due to low blood pressure when she got up. Wed they wrapped her legs and applied a torso girdle like a mini flight suit, this kept her blood pressure up and allowed her to start PT. She shuffled up and down the parallel bars a few times. Thurs the PT as her if she wanted to see how far she could walk back to her room. She made it all the way, about 175 feet. In the afternoon the PT asked her if she was ready to get into her wheel chair to return to her room. Lindsey asked if she could walk and she made it all the way again. Friday she was doing some walking laps and working on technique. Friday she also noticed heat on her right shoulder from a heating pad therapy during OT.

    Saturday she had a minor set back as she caught a stomach virus and put her down for the day, missing both PT and OT sessions. She missed the Dance/Drill district championships, her team won 1st place in the drill category and 2nd place in both Pom and Kick. She expects to walk into the state competition on March 28th. Today, Sunday, is an off day so hopefully she can get rested up for resumption of progress tomorrow.

    I have started a blog for her here: https://www.caringbridge.org/visit/lindseybeck

    Lindsey's story is a little different than the unknown injuries many of you have suffered, but it is now an injury, though surgically induced. I will continue to share her story and hope to hear from others we can learn from. I'm an engineer and like to plot function vs. time, with no answers for either axis, patience is the name of the game.

    Thanks,
    Doug

    Last edited by DesertBighorn; 03-08-2009 at 11:41 PM. Reason: Added MRI

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