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    Suggest treatment for Ehlers Danlos syndrome

Posted on Tue, 23 Aug 2016 in Genetics
Question: I am a 36 yr old f recently diagnosed with ehlers-danlos syndrome, believed tlo be hyper mobility type but with vascular overlap, I have a pfo and my eustachian tube is not only present but has grown to now actually bisect the right ventricle of my heart. I have suffered one major stroke, age 28, but have Tia's frequently. I have bilateral optic neuropathy, bilateral perineal neuropathy, ulnar and radicular neuropathies, a history of cancer at 15, absence of the external jugular vein...basically I'm put together wrong. I would like to know what I can do, if anything and whast my prognosis is.
Answered by Dr. Diptanshu Das 35 minutes later
Brief Answer:
Patching of the PFO might be necessary.

Detailed Answer:
Thanks for asking on HealthcareMagic.

I have gone carefully through your query. Ehler Danlos is a genetic disease wherein the structure of collagen is faulty. Collagen is a connective tissue that is present in the affected tissues. There is no way that the genetics can be changed (the genes have already done most of the job anyway while laying down the structural foundation of the body). The only way is to deal with it symptomatically. The structural anomalies and aberrations will not kill you but the passage of blood clots through the patent foramen ovale (PFO) to the other side of the circulation is responsible for cerebrovascular accidents (CVA) like strokes and transient ischemic attacks (TIAs) and they could indeed kill you. So, closure of the PFO in your case is necessitated and you should get in touch with a cardiologist or a cardiothoracic vascular surgeon for the same.

Since the problem is in the structural unit, the structural problems are everywhere and you need to deal with the after-effects of the aberrations. The gravity of the aberrations will determine your prognosis and the only way is to deal with things as they appear.

Feel free to write back in case of further queries.

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
Follow up: Dr. Diptanshu Das 20 hours later
Thank u for your answer as it did provide further knowledge. However, con ernin g the pfo closure, I I've met with several doctorz in luring the head surgeon at. XXXXXXX university in nyc. He is the Dr who informed me of the presence of the eustachian tube in addition to the pfo and said he had never seen a case such as mine, whereas the tube was so prevelant that it was thick tissue now bisecting the right chamber of my heart and closing the hole would result in my death. I am hoping to learn if you have ever heard or seen a case like. Mine and if u r aware of any alternatives. If the ho!e cannot be closed, what would u expect my prognosis to be? Lifespan, quality, etc. Also, I've already had surgeries due to frequent dislocations And suffered palsies, am forced to whered a shoulder brace to stabilize the joint..broken foot due to slip and resulting ankle dislocation..I can handle whatever Im dealt but I. Need an honest opinion on what other complications I my suffer as well as my own perhaps shortened future, ability to work, care for myself and my children..in order oo plan for what is to come. I have noticed that my general health began to rapidly decline about two years ago.I know these are a tremendous amount of questions and would be very grateful for any answers u may I've.
Answered by Dr. Diptanshu Das 8 hours later
Brief Answer:
Hard to comment without knowing the entire details.

Detailed Answer:
Thanks for writing back.

Probably you are referring to the Eustachian valve. The valve of the inferior vena cava (eustachian valve) is a venous valve that lies at the junction of the inferior vena cava and right atrium. It could be that the PFO is providing an adaptive and survival advantage. It is hard to comment without going through the details of an echocardiogram, although a clinical examination is also necessary for correlation. But your cardiologist would be able to comment what exactly can be done in order to minimize the risks of cerebrovascular accidents. For example, taking aspirin will reduce the risk.

It is no use discussing prognosis. You need to understand that you have multiple problems and that you ultimately need to deal with them. That is the simple hard fact. I am quite sure that it would not be too hard, although it is definitely harder than the situation most people face.

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
Answered by
Dr. Diptanshu Das


Practicing since :2005

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