I have an 18 year old niece who just underwent brain surgery 7 months ago to remove a tumor causing Cushing Disease. She has a very unique case as the tumor was in the hypothalumus. She is still very sick and daily struggling. Two week ago they removed her gall bladder.
We have come to understand that she has an enlarged heart and this is our main concern now. We are very curious to get some answers if possible. The doctor's reports read as such: -- this is what the report actually says:
"Heart size is enlarged and there is mild central interstitial edema as well as bibasilar volume loss." Then a few lines later is gives you what is called a "final impression" by the doctor and it says:
"Enlarged heart with central vascular congestion."
She does have some signs of what they call symptoms of an enlarged heart or heart disease that could cause enlarged heart--- the nausea being on and then a full feeling all the time and low blood pressure and dizziness-- she has all that-- but then they also said sometimes there is swelling throughout the body- she doesn't have that-- and coughing which she doesn't have--- so we just don't know. But it says fatigue and weakness are main symptoms and she has that constantly.
I have read before the Cushings is very hard on the heart and that anyone who has been diagnosed with Cushings should see a cardiologist to have everything checked out. It was written in the neurosurgeon's report that they consider her Cushings to be "severe and with a relentless progression"..... so we are wondering if this could mean they suspect the enlarged heart will lead to death and just aren't telling us...Any information would be very helpful. Thanks so much!
The description of your niece’s heart comes from a chest X-ray, which sounds as if there is some fluid build-up in the lungs as well as likely in the heart. Cushing’s disease occurs as the systemic findings of Cushing’s syndrome, which is an abnormally high secretion of a stimulating hormone (ACTH) from the pituitary gland to increase the amount of cortisol, a steroid, in the body. Cortisol is a steroid that we need in times of stress to allow our bodies to increase our ability to deal with that stress. However, long term or chronic exposure to high levels of cortisol can have multiple bad effects throughout the body. One of the affected organs is the heart, which can be affected by high blood pressure and excess fluid retention. It can also accelerate coronary artery disease, both directly, as well as indirectly by promoting diabetes. High cortisol for chronic periods can lead to congestive heart failure (CHF), where the heart’s ability to pump is not enough to meet the needs of the body. I can’t tell from this information whether her fatigue and weakness are due to her heart, though. There are medications that can help her heart, but if she has continued cortisol stimulation, these medications may not keep her from going into worsening CHF, which could potentially be lethal. Her enlarged heart by itself is not a specific concern, but the associated clinical findings with it may mean that she is already demonstrating some aspect of CHF.
From what you have written, it sounds like they made the diagnosis of the enlarged heart based off of an xray. It is pretty vague. From my experience, further testing might be indicated I think the best route would for your niece to ask the neurosurgeon to refer her to a cardiologist. He should be able to determine if they need to pursue the issue. If so, then I would also say that getting an EKG (maps out how the electricity moves through the heart) and an echocardiogram (ultrasound that looks at how well the heart squeezes) might not be entirely out of the question. Cushings, from what I've read can affect almost every cell in the body by blasting it with extra cortisol. It is hard to give any definite answer since the situation is so unique.
Doctors, for the most part, are pretty frank about giving you bad news, especially when it concerns death. They do not like to give bad news, but they do it if it is called for.
Thank you very much Dr. Boris. My niece's Cushing originated from a tumor in the hypothalamus. They say that she is a very rare case (less than 80 in the last 300 years - I believe was the numbers they gave my sister).... This makes getting information very difficult because, as you would know, Cushing is usually in either the pituitary or adrenal glands. Your information is helpful. We pulled her chest x-ray from 2 weeks before the brain surgery to remove the tumor. It was a limited report but did state that the heart and lungs looked normal. Do you think her heart could be enlarged from the surgery? And if so, would that then mean that the enlarged heart is a temporary condition? We absolutely appreciate you taking the time to help us with our questions! What a blessings.
I don't believe that the heart enlargement was due to the surgery, as her surgery was in her head and did not involve her heart. Honestly, one of the other reasons that the chest X-ray may have been read the way it was is that it may not have been a completely inspiratory film. Having even a partial expiration during the picture can make the heart look enlarged and make it look as if there is fluid in the lungs. Therefore, I would consider an echocardiogram, or a cardiac ultrasound, to better assess the size of the heart to see if it is truly enlarged, or not.
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