Questions posted in the
Heart Forum have been answered by doctors from The Cleveland Clinic Foundation.
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Subject: Re: Osteogenesis Imperfecta and aortic insufficiency I have posted questions before, and your answers have directed me in further research...thank-you for this resource of information. I have aortic insufficiency and osteogenesis imperfecta and need to have valve replacement surgery. I am a thirty year old female. I am taking 10mg Altace to help with symptoms of fatigue and a forceful heart beat until I am covered by my health insurance and can schedule surgery. My ejection fraction is 32% and LVid is 6.6. I have several questions. First, is it common to have symptoms such as I am experiencing with this degree of AI? (my cardiologist never "classified it as moderate, severe etc.) Second, is it reasonable to exercise as tolerated? (I tend to push myself somewhat past the point of comfort, and tire myself out, is this dangerous?) Finally, I have spoken to a cardiac surgeon in Milwaukee (Dr. Almassi who published one of the journal articles a CC Dr. recommended to me in this heart forum) He has operated successfully on one patient with OI. Are there any surgeons at CC who have had experience with OI patients and valve replacement. If not, do you know of any from the University of Michigan? (anywhere else in the midwest region for that matter) I understand the increased risks to surgery with OI and want a surgeon who has had success with patients like me. Thank you again for your help.
_____ Dear Janelle, Q: Is it common to have symptoms such as I am experiencing with this degree of AI? Q: Is it reasonable to exercise as tolerated? Q: Are there any surgeons at CC who have had experience with OI patients and valve replacement ? Below is some general information on AI. Hope this helps. Aortic insufficiency is a leaking of the aortic valve. If this is not repaired over the long term (years and years - depending on the severity) it can lead to heart failure. The timing of valve replacement is not always an easy decision and for this reason a person with this condition should have regular follow up with a cardiologist who is knowledgeable in the area of valve surgery. In general the replacement should be before the onset of any symptoms or heart failure. Symptoms include shortness of breath with activity, swelling in the lower extremities, chest discomfort and palpitations. Migraines are not typically part of the symptom complex. Some medications such as ACE inhibitors (i.e. acupril, vasotec, captopril) decrease the workload of the heart and can help prevent heart failure. Surgery is however the only cure. The valve used in surgery may be mechanical, bioprosthetic (animal valve) or homograft (human cadaver donor). The only type that requires coumadin is the mechanical. The advantage of the mechanical is that it will not wear out as opposed to the others which only last 10-15 years. You and your doctor can discuss which type of valve is right for you. Hope this information helps. Good luck.
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