Susan is on the other side of the country recovering from back surgery and then will have an appointment with a top specialist to see if she needs further surgery. Let's pitch in to lighten the financial strain of the travel and medical bills so she can focus on her recovery!
Shortly before starting nursing school, Susan started having tight muscles and issues with her bladder. Each month symptoms progressed. She had several MRIs and sought opinions from multiple neurosurgeons. Physical therapy only made symptoms worse. Her feet started having distorted sensation and her reflexes were hyperactive. Her bladder could not empty completely so she had to start using intermittent catheters. The leg weakness and constant headache at the back of her skull proved to be too bothersome and she had to stop nursing school. Hopeful she would find help in another state, she traveled to Seattle, WA but was told it would be "too rare" for her spinal cord to become retethered. (She had surgery on a birth defect called Tethered Cord when she was 15. Basically the spinal cord becomes anchored in place by faulty connective tissue and the spinal cord gets stretched causing tiny strokes and affects the nerves.) After 6 more months of researching and networking with patients online, Susan found a specialist in Rhode Island who is conducting a research study on tethered cords. In January, she met with the surgeon who validated Susan's concern about being tethered. The surgeon offered to do the surgery but stressed that it was somewhat exploratory and could not guarantee how the spinal cord would respond and it was unknown how the surgery would affect the abnormal brain angles and spinal fluid flow issues. Susan underwent surgery on May 11. There have been several setbacks in the recovery but she has a positive attitude. Her bladder stopped working for a full week but now is working better. Post surgery she has had weakness in her right arm with diminished sensation. Both hands have tremors and she has increased clonus beats in both feet. Her neck has visible shaking from weakness. Despite these things, she has been impressing doctors with her walking and has been cleared to walk without her walker! She has had to relearn to walk with a normal gait, something that was not possible before surgery. After 3 weeks in the hospital/rehab, Susan is now doing outpatient rehab at a specialized clinic in Rhode Island for Ehler's Danlos Syndrome; a rare connective tissue disorder. Her neurosurgeon ordered a neck brace to be worn in the car to provide stability.
Susan will need to undergo new imaging and be evaluated by a world renowned neurosurgeon in Maryland on June 16 to see how the surgery has affected her neck instability and possible Chiari or anterior brainstem compression. She will need to travel back to Rhode Island for surgery follow up at 3 months and 9 months.
It would be great to be able to support Susan and Veiko by relieving them of the financial weight of all the travel and medical bills so she can focus on healing as she still has a long road and many miles before she will be home!
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