Hope for Julie
Organized by: Tamala Hall
Tamala Hall via Crowdrise
August 06, 2015
Julie has recently been diagnosed with craniocervical instability and brainstem compression. She has already undergone 2 previous surgeries in the past for Chiari malformation. 25% of symptomatic Chiari patients have complex Chiari with the instability and brainstem compression. It was suspected that Julie fell into this 25%, but wasn't formally diagnosed or treated before. The neurological symptoms are anticipated to continue and progress to the point of being irreversible. Hence why surgery is so important.
Surgery will involve fusing 3 cervical vertebrae with the first one fused to the skull. This will improve the stability and reduce compression by increasing the angle of the brainstem. To put the curvature of the brainstem in perspective, here are some facts: Desired Normal range is between 140-150 degrees, Significant Neuro Impairment occurs at 125 degrees, and Julie's is at 123 degrees. The further the curvature of the brainstem, of course the more symptoms one will have. She will have to wear a cervical collar for 3-4 months and also have physical therapy after the surgery. The surgery is Not curative, and Does come with permanent restrictions, but it gives Julie hope that she will be able to resume being active with her family.
Right now, Julie's symptoms are increasing and severely limiting her daily life. There is the pressure in her head, the headaches, and instability at times...just to name a few. Anyone that knows Julie, knows how much she loves being active and involved with her family and the community. One of her passions is running, she has even competed in half marathons in the past. Sadly, that will never be an option for her again. Although there will be many restrictions and things Julie will be giving up with the surgery, it will in turn give her a chance to maintain as normal of a life with her family as she can. They are her world and she wants to be as much of a participant in activities with them as she can be.
The surgeon that will be performing the surgery for Julie is in NY. Why NY some people may ask.....the answer is that he is within a very limited and small group of specialists that operate with patients like Julie. As far as time off: Julie and some of her family will be flying up two days prior to the surgery. The surgery is scheduled for August 4th. Then she will remain in the hospital for 5 days after the surgery. It will be another 2 days after being released from the hospital before she will be released to fly back home. Then once home, she will be off work a good 2 months. Her paid leave for work will be exhausted before she is able to come back to work though. Then there is the out of pocket cost that insurance won't be covering, the plane tickets, cost of hotel stay while there, and of course food. This a very large and unexpected financial burden Julie and her family are facing. She is one of the most compassionate and generous people that I know, always helping others where and when she can. It's time to help her now in her time of need. Let's help give Julie hope.