Tracy's Pain Story

The Brooks Family Foundation for RSD/CRPS
After 9 years of pain, Tracy has her life back! Help us help others get their lives back too!

Tracy's Pain Story

Tracy has been dealing with severe pain since the age of 16, at the beginning of her Senior year in high school. She had always lead a very active life – dancing competitively on stage until tenth grade, active in youth groups, camp counselor in summers, avid volunteer. Her greatest talent has always been in working with children, and she was committed to becoming a teacher, specifically with children with special needs.

When her pain began – very suddenly at the age of 16, we thought it was just severe menstrual cramps. Eventually she was diagnosed with endometriosis. After her second laporoscopy, she was told she did not have a severe case, but the level of disease does not necessarily correlate with the severity of pain. She was placed on many different types of medications, which threw her system off, caused her to gain weight (but when you start from a size 0, that’s not necessarily something other people notice). She continued to have pain as she started college, but had good time in between. She joined a sorority and lived in the sorority house. But there were also many times she could not move – had to take paratransit to get to class. She acquired a handicapped tag for her car. Adaptations to a life of often incapacitating pain. Nights she couldn’t join her friends for planned social events. Nights she ended up in the hospital for relief.

She saw doctor after doctor at excellent institutions, both in the Philadelphia and Washington area. The closest anyone came to the possibility of the pain not being endometriosis any longer, was a doctor who said there were probably nerves in the pelvic area that were misfiring, and some meds were tried to this end. But the pain continued. OB-gyn docs sent her for other specialty evaluations, but until 2007, no one suggested seeing a neurologist.

Finally, when Tracy realized that she could no longer function in her teaching position due to the pain, nor care for her beloved dog, she called on us to take her home for a while. This would enable us to drive her for ongoing therapy she had started at the suggestion of a rehabilitation pain specialist in Bethesda. This did not help; in fact, it only increased her level of pain. Now what?? In desperation, I called Dr. Craig Winkel who had treated her initially in Maryland until his retirement as Chairman of OB-GYN at GeorgetownUniversityMedicalCenter. On listening to Tracy’s symptoms, he said, this cannot be endometriosis. He was not sure what it was exactly, but said that she needed to have a neurologic work-up.

Not knowing where to start, I called a friend from high school, Dr. Randy Rosenberg at Neurocare Diagnostics in HuntingdonValley who was kind enough to see us the next day and spent four hours of time with us. He knew from talking with Tracy and examining her that she had a neurological problem which he felt was probably RSD, but did various blood studies and MRIs to rule out other possibilities (demylinating diseases such as MS). Within a week or so we finally had a diagnosis that was making sense . . . RSD. Dr. Rosenberg began work to wean Tracy off the medications other docs had placed her on that he felt were not helpful, and started her on others for RSD. At the time, Dr. Rosenberg felt Tracy was not as involved as most people who’ve had it this long, and that was in her favor. Although he could detect signs of RSD in her hands and feet, (foot drop, slight differences in temperature/color) these were not readily apparent at the time.

They are now. And much more.

Tracy’s RSD has spread through her body. Tracy is now also under the care of Dr. Robert Schwartzman (Chairman, Department of Neurology) HahnemannHospital/ Drexel University School of Medicine. We are so fortunate that Dr. Schwartzman, probably the foremost clinical and research practitioner for RSD in the country, is in Philadelphia.

Under Dr. Schwartzman’s care, Tracy has undergone 2 five-day hospitalizations for infusions of first lidocaine and then low-dose awake ketamine. Both treatments miraculously took away her pain for a time, but as Dr. Schwartzman warned us it would, the pain did return – gradually at first, but then with minor injuries it eventually came back full force and now it’s at its greatest. Dr. Schwartzman believes that narcotics are “not Tracy’s friend” and began the weaning process while she was in the hospital each time. She was eventually quite successful. However, she’s went back on them prior to the coma – on the lowest doses that will quell the pain for a period of time so she could minimally function.

On October 13, 2007, Tracy and her parents flew to Germany to begin the ketamine coma...you can read a detailed account of the experience on "Gayle's Notes" ...after the treatment and a few months of recovery, Tracy has her life back! She is now living in Maryland again, on her own, and is about to go back to teaching full time for the first time in over a year.