Patient Profile

Julia

Profession: Other
Hobbies: Family, Fine Arts, Horseback riding, Humanitarian Action, Other, Pets, Reading, Theater/Opera, Travel, Walking
Doctor: Dr. Winston Warme

Briefly describe your symptoms and the medical condition that brought you to see the doctor.

In May 2016 I started experiencing aches in both shoulders (among other symptoms), by October both were frozen. I began twice weekly PT in November, but saw no improvement. In April 2017, I was diagnosed with systemic Scleroderma. My rheumatologist, Dr. Sacksen (fantastic doctor), performed an ultrasound on my left shoulder (my dominant side and the most restricted) and gave me a cortisone injection. Cortisone helped with the pain, but did not allow any more progress from PT. In June 2017, Dr. Sacksen referred me to Dr. Warme for evaluation of my shoulders.

On September 5, after much research and consideration, Dr. Warme performed an arthroscopy with manipulation on my left shoulder. I have my right shoulder scheduled for December.

What one or two things stand out to you about your experience with your doctor and their team?

From the moment I met Dr. Warme he showed sincere interest in my condition, not just my shoulders, but the greater impacts I was experiencing due to Scleroderma. When he noticed that my left hand was essentially unusable, he pulled a hand specialist into the appointment and then personally walked me over to occupational therapy to begin treatment with Carol Recor (outstanding therapist). Every appointment thereafter his first inquiry was about my hand and he showed as much excitement at its improvement as I did.

Out of his commitment to first do no harm, as well because he doesn't see many Scleroderma patients, Dr. Warme did not rush into surgery. He contacted colleagues around the world to discuss my circumstances and to try and understand what we might encounter both during and post-surgery. He was honest with me about what he learned, even though he didn't find many surgeons who had worked on Scleroderma patients, and together we decided how to proceed.

What can you do now that you could not do before surgery? Have you been able to return to your hobbies or sports at the same level as pre-injury or at an even higher level?

Immediately after the surgery I was able to do my own hair and dress myself! Prior to this last year and a half, I took basic functions for granted. After not being able to do so many things for myself due to restricted range of motion I celebrated this independence.

I am still not back to 100%, but I have it in my sights. I have a little retraining to do on my left arm. I was compensating so much pre-surgery that my body started to consider that the norm, but my physical therapists believe that with consistent work I can keep and increase the ROM I had post-surgery. Then we'll turn our attention to the right side. In 2018, I'm looking forward to getting back to my more physically active hobbies.

What advice would you like to share with a patient with a condition such as yours who is considering surgery?

Finding the right healthcare providers to work with is critical! While their expertise is important to your well being so is their bedside manner. In the last 1.5 years on my Scleroderma journey I have come into contact with a lot of providers. I am fortunate that most of them are outstanding, they are thorough in their care, thoughtful listeners, and responsive when I have questions or concerns. However, I have had some encounters where a provider interacted more with the data in my chart than with me as a person, or they didn't take the time to review my chart before the appointment and we essentially just repeated the previous appointment without making any progress. In cases like this, as awkward as it may be, don't be afraid to stand up for yourself and, if necessary, to find another provider.

I also found it extremely beneficial to have as many of my providers as possible within one healthcare system (UW Medicine). It makes communication and coordination of care much easier and more timely.

Please share any additional comments!

Dr. Warme is THE BEST!!! I am so grateful for his care.