Pectus Excavatum

My name is Stephanie and I am a 38 year old female born in Chicago Illinois. I live in Wisconsin now. I was not born with Pectus Excavatum, but the deformity started to develop in an obvious way when I was about 9 years old. The deformity continued to get worse even into my 20's and 30's. All my life I have had other health problems including asthma, allergies, pain in my back and chest and fatigue. I was often sick as a child and had frequent bronchitis and pneumonia. It probably didn't help that i was around a lot of cigarette and cigar smoke as a child!

I was also very embarrassed about my pectus as a child. I don't know why but my family was embarrassed about it. There wasn't anyone else with pectus but my father had pectus carinatum-pigeon chest. I think my father was extremely embarrassed about his pigeon chest. His parents and siblings made fun of him and would make him take off his shirt at the beach. I never saw him without a shirt on, NEVER. I guess I absorbed his shame. He died in 1983 at age 58.

I have now learned that I have a connective tissue disorder (probably inherited from my father) such as Ehlers-Danlos, but we're still in the process of sorting that out with genetics. I have always been easily fatigued but about 3 years ago my symptoms worsened. I had no tolerance for walking, especially in heat, or up and down stairs. I would feel 'light' and go limp and have to sit down. I was told by one Physician's Assistant that I was experiencing 'Anxiety Attacks'. That just irritated me more and I was determined to find out what was wrong. An MRI showed that I had about 2 cm between the bottom of my pectus and my spine. An echocardiagram showed no abnormalities but a doctor at a clinic here felt that it was important to assess heart function while I was exerting myself. She ordered an exercise stress test which revealed a had a defect in my right ventricle upon exertion. Once I had been pedaling a bike for 3 minutes and started feeling 'light', they could not even get a blood pressure in my left arm for some reason. I saw more specialists and they all concurred that repairing my Pectus Excavatum might be very beneficial to my health. I decided to go with a surgeon at a children's hospital in Wisconsin and have the Nuss Bar surgery. I knew it was experimental on adults but thought it was worth a try.

I had my first surgery in March of 2003. The pain was bad but I have suffered for so long, I can't say I was in such bad shape. The moment I woke up from that first surgery the worst pain I had was actually in my back and they had to knock me out with medication to keep me from thrashing. Unfortunately, about 2 months later the chest began to sink back in and I was in severe pain on my right side. Just breathing was painful. Xrays confirmed that the bar had slipped upwards and should be repositioned. I was taken back to surgery in June of 2003 and they placed a new, shorter bar in place and wired in the stabliziers. Unfortunately, this did not hold and several months later I was in the same position-the bar slipped upwards and I was in much pain on my right side.

My surgeon at the children's hospital said the bar surgery would not be a good idea to re-do but that he could do the 'old' procedure, the "Ravitch" or modified Ravitch on me. He uses a 'strut' or a small bar behind the sternum in the Ravitch procedure. This bar would need to be removed after 6 months to a year. I had corresponded with a young (19 years old) girl on the internet who had had problems with the Nuss bar and had it re-done at Mayo Clinic in Rochester Minnesota. I decided I should see the surgeon she recommended, despite having to travel to Minnesota. After meeting with him, I decided he should do the surgery. I liked him and he said he did not place a bar behind the sternum and recommended that I not have a bar placed behind the sternum because my body had been through so much surgery that having the bar removed would be added stress.

I underwent the Modified Ravitch procedure on June 25th, 2004. This was one year exactly to the day after I had my second Nuss surgery. Because of all the pain I had been through already, the surgery was a breeze for me! I even surprised the doctors and nurses with how well I did! I am still doing well. I am 2 months post surgery and pain medication free. I still have some pain now and then but it's mostly twinges and a lot of back pain, which I've always had but being sedentary for the last year hasn't helped so I am working on building my strength.

I was also recently diagnosed with the beginning stages of Osteoporosis so I have to battle many things but at least I am on a track to working on these things instead of being told, as I was my whole early life, that my health problems were all in my head. I was told that pectus excavatum had NO ill effects other than cosmetic and that Pectus was not related to other health problems. I have found out that this is not true but some doctors still say this. You can correspond with me if you have any questions.