Patient Comments

Though it is important to note that not all patients with the Chiari malformation benefit from surgery - and that some improve only temporarily - many have significant improvement in the quality of their lives. In fact, some have a whole new lease on life . . .

Patient Stories:

My Son's Miracle

This is a long overdue note to thank you for giving my son the benefit of your expertise and experience in operative procedures for Chiari malformations. He has regained many of the functions he lost at the onset of this complex, debilitating condition, and we are still hopeful that he will regain his hearing and lose the Tinnitus! If that does not occur, we are still most grateful for his recovery thus far. According to all the messages posted on the WACMA site by Chiarians, CSF leaks after duraplasty are fairly common, also staph infections. I well recall Dr. Oro saying it was like "sewing into a bag of water"; neither complication happened in my son's case, again reinforcing our conviction that God lead us to the best surgical team in the United States for his particular malady. Again, thank you and bless you as you continue to perform your miracles in the operating room.

It Feels So Good To Feel Good!

On August 3 my life changed. I was on a slow, 10 year digression until my doctors decided to look deeper into my problems. Being a teacher and a mother of 5 children, my minor complaints for the last 10 years were mostly blamed on stress. My first problem; bad headaches from sneezing and coughing, was mostly discounted as stress. Over the course of 10 years, I went to the doctor for headaches, dizziness, numbness, and finally a difficulty with swallowing. The diagnosis and medication for these did little to relieve my distress. When my primary physician recommended an MRI, I finally began to see some results. In about 2 weeks time, my diagnosis was made and preparations were set for my surgery. I was very well informed about the procedure by Dr. John Oro - my neurosurgeon, and his physician assistant. There was no question about whether or not to have the surgery, or when to do it. All parties agreed to keep moving as soon as possible. In the few days before my surgery, I felt I was given too much information, because I was very anxious about the whole procedure. Eventually, the knowledge was a comfort to me because I realized everything was going according to plan. Feelings and pains and tingles were understandable. I think my recovery was so smooth and quick because I understood what was happening to me. The first days after surgery were spent just getting my equilibrium back. There was a little pain which was controlled easily with medication. Almost immediately I noticed a return of many functions I had lost. The numbness was gone, and I could swallow much easier. My head only felt a tightness from the inside and outside incisions. As the medications wore off, there was a "soreness" in my head, but not a headache. Over the next week, I spent a lot of time resting and trying to eat, but my appetite didn't really return for about 2 weeks. During this time I was up and down as I felt necessary. I'd move around and participate in family activities until I felt tired, then I rested again. When I was up long enough, I felt a kind of pounding on the right side of my head. Lying down always relieved that discomfort. By the 3rd week I found that I could be up and engaged in light activity with only a little rest needed. In fact, as a teacher, I started school exactly 3 weeks after my surgery. I was a little weak, and I was still pushing myself to eat. I drank power drinks to try to regain strength quicker. By the fourth week after surgery, I was feeling so good, I had to force myself to rest. My appetite was back and I was gaining strength by leaps and bounds. With the surgery effects getting better, I was constantly amazed at how good I was feeling. The symptoms of Chiari were nearly gone and I felt in constant wonder of how good I was feeling. Many of the functions I felt I would never regain, were back. There's no difficulty swallowing, and I can sneeze without fear of loosing my head. It's been such a wonderful recovery, I can't even describe it! My family is constantly amazed at my exclamations of delight. It feels so good to feel good. I'd forgotten how that feels. This is all due to the wonderful doctors and nurses who worked together to diagnose, treat, and assist in my recovery. The neurosurgeon even postponed his vacation to perform my surgery. I'm very, very grateful for that because it enabled me to start school on time. I can't say enough about my great care, but I am certain my quick and complete recovery is mostly due to them. I'm now 150% better than I was 5 years ago.

To learn more about the results of Chiari surgery, visit the Learning Center on this website.