Have questions that doctors wount answer

[Raquel]

My Husband Had a mechanical aortic valve replaced and his aorta(ascending) grafted 8 weeks ago and was back in ER for blurred vision and dizzyness, which doctors said was a small stroke. Had ct scan and doctor was very leary about giving us info. After asking he said that the corotid artery was at risk of dissecting B/C he has Marfans but it should heal itself with the meds(Lopressor 50mg 3x a day) but his reports that we have say this: A dissection flap is seen originating just distal to the aortic graft and extending through to the decending aorta and into the proximal right common celiac artery. there is also extension of the dissection into the innominate artery and likely into the right common carotid artery. there is suggestion of extension onto the origin of the left common carotid artery as well. the heart is enlarged and there is a small left pleural effusion. there is a nonspecific 9 mm pretracheal lymph node. Dose anyone know what the heck this all means???? Please help with some info!!!!!!!!

Thanks

 

[medtronic of borg]

report

report

proximal is a fancy way of saying the nearest part, to the midline, or origin.

distal is the farthest from midline. The elbow is distal to shoulder, the shoulder is proximal to the elbow.

In a nut shell the disection is not confined to just the aorta but also the the arteries. Beyond that you really need to pin your Dr. down on each line of the report. Take them one at a time and explain you are just trying to understand. Only he/she can look at them with you and explain what they see and what are the concerns.

I hope this helps a little.

Med

 

[Arlyss]

Information Regarding Aortic Disease

Information Regarding Aortic Disease

Dear Raquel,
I hope that your husband is recovering well from his stroke. I am so sorry that you have not been given enough information.
I am going to share a link that contains some information about the aorta, aortic aneurysm, and aortic dissection. http://www.cedars-sinai.edu/aorta
In the section called aortic disease, there is a diagram and a description so that you can see where the arteries that branch up to the head, the celiac artery, and other branching arteries are. There are also descriptions of what dissection is, as well as information about aneurysms. I hope this helps you. There is an email interface on this site if you should have more questions about anything.
I assume the valve and ascending surgery were done because your husband had problems with his valve as well as an aneurysm. Were you told if the dissection was present then, or do you think it occurred at some time following his surgery?
Dissection of the descending and thoracoabdominal aorta is usually treated with blood pressure medication. However, if the aorta eventually enlarges too much, surgery to replace it may also be needed. The link listed above contains information about that also.
I'm not sure how much you may have been told about Marfan syndrome. It is a connective tissue disorder with very specific characteristics. There are probably many sites on the web where you can read the details. Sometimes people do not meet all the criteria to be considered Marfan, and are called Marfan-like. It doesn't matter so much whether one fits the exact label or not! It is just important to have the care that is needed, especially for the most critical aspects such as the aorta.
I wish you well in your search for information.....it is very important to understand as much as you can. Please feel free to email me if you would like. I well remember how it felt when my husband was first diagnosed with an aneurysm, and I had very little information in the beginning.
Best Wishes,
Arlyss

 

[Raquel]

Arlyss,
Thanks for that amazing site!!!! I left a message for one of the doctors to call and I sent him my husband report so we will see. His cardio and the surgeon both said that his entire Aorta is dissected and it has to be carefully watched They said it has spread as fare as the corodid and iliac arteries which can't be operated on. I have never heard of this happening to anyone have you? As fare as the Marfans our oldest has it and I'm pretty educated about it we are part of the Marfans foundation, but thanks anyway, it's all about my husband walking around with his entire Aorta dissected that scares the heck out of me!!!

Thanks
Raquel

 

[Raquel]

They also said that the dissection was always there but only the arch could be repaired(that was conpletly torn apart). He was diagnosed at 17(he's 34 now) with a dilated Aorta and about 5 years ago he stopped his meds and dr apts. so this ofcourse happened. He had a mechanical Aortic valve put in 27mm St. Jude.

 

[Arlyss]

Hi Raquel,
I'm glad you found the information helpful.....I have just sent you an email with some additional information.
Take care,
Arlyss

 

[HeatherK]

Arlyss,
His cardio and the surgeon both said that his entire Aorta is dissected and it has to be carefully watched They said it has spread as fare as the corodid and iliac arteries which can't be operated on. I have never heard of this happening to anyone have you? ...but thanks anyway, it's all about my husband walking around with his entire Aorta dissected that scares the heck out of me!!!

Thanks
Raquel

Raquel,

My mom actually was told a similar thing as your husband. She had surgery in January of this year, She had her valve replaced and the ascending aorta fixed to the arch, but according to the doctor (surgeon and cardiologist) she is still dissected throughout the remaining of the aorta, including the arteries that branch to the arms and legs. I'd never heard of a case like that either, before. And she doesn't have Marfans - they're not exactly sure what caused it - maybe high blood pressure. Anyhow, I don't have all the details yet, but when she goes for her next cardiologist appointment in July, I'm going.

Anyhow, I wish the best to your husband - he'll be in my prayers.

-Heather

And Arylss - that was a great site! Thank you!