My daughter Crystal has been chronically ill for almost three (3)
years now. In Feb. of 2001 she was giving a presentation in class at
her high school. She suddenly found herself in a great deal of pain
and her right arm was swollen and turning blue. After going to the
school nurse she went home and was taken to the doctors. If was
first thought that she had gotten a bug bite. After some hours
Crystal was taken to Virtua Hospital of Burlington County, NJ and
admitted. The determined that Crystal had a blood clot in her
subclavian vein and was transferred to Childrens Hospital of Phila.
There they began treatment for a blood clot and she was sent home
with Lovenox injections which she was to give herself twice a day.
We followed doctors' orders but for months continued to have to
return to Childrens Hospital for arm pain, swelling and
discoloration. We couldn't understand why if we were doing what was
prescribed Crystal continued to have problems. In August of 2001 we
consulted with a hematologist at Dupont Hospital in Delaware who also
consulted with a vascular doctor from Christiana. In no time they
diagnosed Crystal with TOS and scheduled a surgery to remove her top
rib bone on the right side to alleviate the compression. Shortly
after the surgery if was decided that the left side should also be
done. Unfortunately this was only the beginning of this nightmare.
Because of all the time the right side went undiagnosed, substantial
nerve and muscle damage had ocurred. She has had several nerve
blocks, nerve ablation, botox injections and many procedures, too
many to list. Also, as a result of what this has done to her life
being in chronic pain, having to be taught school as a homebound
student, unable to work as an eighteen year old, she suffers from
depression and not to long ago was hospitalized as a result. We are
scheduled to return to the Spine doctor on the 3rd and the vascular
doctor on the 10th. We hope to get some answers as to why she hasn't
gotten much relief and where we are to go from here. Any insight or
advice from anyone who has had TOS to this degree or any medical
professional that may be able to guide us would be greatly
apprciated. PLEASE! I am very fearful for my daughters future.