Ken's Story

Photo of OHSU Brain Institute patient KenI had previously suffered from trigeminal neuralgia which was like a lightning strike to the face anytime something triggered it. Cold, hot, any touches around the mouth area would set off a storm of pain so intense that it was appropriately called "the suicide disease." Dr. Burchiel at the OHSU Brain Institute took care of the problem, surgically, both times that it flared up. I have also had chronic lymphocytic leukemia (CLL) for several years and was being watched by Dr. Andy Chen at the OHSU Knight Cancer Institute. (I use the term "watched" because the CLL has never presented any problems in all the years since I was diagnosed.)

So, I'd already had very positive experiences with OHSU when, in 2014, I started feeling weak in the lower part of my body to the extent that I had a hard time getting out of a chair or in and out of a car. Gradually, the weakness moved to the upper part of my body, also. The neurologist that I had been referred to by my PCP started me on in-home IVIG treatments but, after the 4th session, I ended up in the hospital with extremely high blood pressure. After a week in the hospital and 10 weeks in a rehabilitation/physical therapy facility, I was finally able to return home.

At that time, I switched to Dr. Karam, a neurological specialist at OHSU for a second opinion and long-term treatment. He agreed with the original diagnosis of chronic inflammatory demyelinating polyneuropathy (CIDP), an autoimmune disease that attacks the myelin that covers nerve fibers. Dr. Karam re-instated the intravenous immunoglobulin (IVIG) infusions, this time in a facility in Gresham. I continue to have the infusions every other week and take prednisone, gradually decreasing the dosage.

A year ago, I couldn't stand nor walk. With treatment, I have gradually gone from wheelchair to walker to cane to walking on my own. I continue to gain strength as I return to all my normal activities. Every morning I do 40 minutes of PT, mostly lower-body like knee bends, leg lifts, and ankle rotations. I can now pick up and unload a 40-pound bag of pellets for my pellet stove!

This experience has been life-changing in many ways and I am grateful to the doctors at OHSU for taking it from the scary place of uncertainty to the comforting place of possibilities.

The experience has been life-changing.