Getting the diagnosis of Parry Romberg Syndrome was devastating to us. The doctors didn't know much about it and the only treatment option we were given for our then seven year old son was a form of chemotherapy and intravenous steroids. We weren't comfortable with this and started to research other options. Everywhere I looked, I seemed to hit a brick wall...After 2 1/2 months of constant searching, I was directed towards Dr. John Siebert, a doctor who performs an "intervention surgery" on PRS patients. I sent the doctor an email and was so shocked when he called me on my cell phone, just a couple of days later! It's rare to have a doctor actually call you!
The minute I heard his reassuring voice, I knew things would be different. We flew across the country to see him for a consultation. He took one look at our son, Hank, and said, "I can help you." My husband and I let out a huge exhale of air...I think we had been holding a breath since Hank's diagnosis! Hank had a "micro-vascular free flap tissue transfer" right after his 8th birthday, just four months after meeting Dr. Siebert.
The care Dr. Siebert gave our young son was amazing! From pre-op, to surgery to the after-care, Dr. Siebert was there. He even followed up with us after we got home. At one point we thought Hank had an infection and sent a panicked message to Dr. Siebert. He called right away...it was late...at least midnight where he was. He had just finished with a surgery and was still at the hospital. He waited there while I took photos of Hank and then emailed them to him. He then called a prescription in to the 24 hour pharmacy that we use. Who does that? Dr. Siebert goes above and beyond. (as it turns out, Hank did not have an infection and was just fine)
We can't say enough good things about Dr. Siebert. We admire him so much and love him for what he has done for so many people! Thanks to Dr. Siebert, Hank is enjoying a "normal" life...getting straight A's, playing in the school band, playing baseball...doing all the things a healthy 11 year-old should be doing. A few years ago, we didn't know if this would be possible! Hank has had 2 revision surgeries and each time the outcome is amazing. It's been two years since Hank's last surgery and as we get ready to head to Madison to see Dr. Siebert, we are so excited! Surgery is no fun...but seeing Dr. Siebert makes it all OK.
Dr. Siebert is our hero...he's one of the good guys...we consider him family!
God Bless,
Terri
Hank's Mom
The minute I heard his reassuring voice, I knew things would be different. We flew across the country to see him for a consultation. He took one look at our son, Hank, and said, "I can help you." My husband and I let out a huge exhale of air...I think we had been holding a breath since Hank's diagnosis! Hank had a "micro-vascular free flap tissue transfer" right after his 8th birthday, just four months after meeting Dr. Siebert.
The care Dr. Siebert gave our young son was amazing! From pre-op, to surgery to the after-care, Dr. Siebert was there. He even followed up with us after we got home. At one point we thought Hank had an infection and sent a panicked message to Dr. Siebert. He called right away...it was late...at least midnight where he was. He had just finished with a surgery and was still at the hospital. He waited there while I took photos of Hank and then emailed them to him. He then called a prescription in to the 24 hour pharmacy that we use. Who does that? Dr. Siebert goes above and beyond. (as it turns out, Hank did not have an infection and was just fine)
We can't say enough good things about Dr. Siebert. We admire him so much and love him for what he has done for so many people! Thanks to Dr. Siebert, Hank is enjoying a "normal" life...getting straight A's, playing in the school band, playing baseball...doing all the things a healthy 11 year-old should be doing. A few years ago, we didn't know if this would be possible! Hank has had 2 revision surgeries and each time the outcome is amazing. It's been two years since Hank's last surgery and as we get ready to head to Madison to see Dr. Siebert, we are so excited! Surgery is no fun...but seeing Dr. Siebert makes it all OK.Dr. Siebert is our hero...he's one of the good guys...we consider him family!
God Bless,
Terri
Hank's Mom