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SMA Syndrome aftercare help
Daughter is 20 yrs. old and had SMA surgery 2.2011 - still in pain and still can't hold anything down. She feels none of her doctors are "taking her seriously". I need help immediately - she is giving up and loosing the will to go on. I need the best doctor - ANYWHERE that has had experience with SMA and is interested in helping her.
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Obviously your daughter should not be having all these terrible problems from her surgery, particularly when SMA syndrome is so rare.  I do not understand why her doctors are not responding to what I consider serious problems after ANY surgery.  I found a facebook website that somehow I've now lost the link to, but here are a list of some doctors I typed up quickly who know about SMA surgery, and I picked the ones from the most well-known hospitals, and threw in another from New Orleans, since your profile said you were in Texas.  If the physicians have since retired or moved elsewhere, at least you know the hospital itself will be able to handle what is going on with your daughter.

Physicians who know about SMA surgery include Dr. Kendrick at the Mayo Clinic in Minnesota, Drs. Mullin and Marohn at Johns Hopkins Hospital in Baltimore, Dr. Dorsky at the Cleveland Clinic in Ohio, Dr. Goldin at the University of South Florida in Tampa, FL, Dr. Reger at St. Vincent Hospital in Portland, Oregon, and Drs. Richardson and Conway of the New Orleans Oschner Clinic in New Orleans.  It IS possible if you at least get through to one of these physician's offices, that someone there could recommend a qualified doc in Texas.

The little bit I found out about complications from SMA surgery suggest that your current docs really ought to admit your daughter to the hospital and see if she's got some serious complication going on.  And you could go over their heads and just take her to the ER.  But as relates to her type of surgery and what may have gone wrong, a doctor may need to drain the operative site, make sure there is no bleeding or infection going on, she needs better pain drugs, she may need an I.V. for hydration and electrolytes (the ER can at least do that), and also my understanding is  a feeding tube can be put directly into the small intestine if she doesn't already have one already.

One thing at-home that prevents vomiting, so your daughter may be able to then keep food down, is to consume foods with potassium, which include bananas, tomatoes, and orange juice.  In addition, antihistimines can prevent the incorrect movement of the bowels in an upward way, and I might add that the antihistimine benadryl can help people sleep, which if a person is in pain, it helps to rest well.  But do not give her any of these items without first checking with her docs.

Wow, I would be so upset if this happened to any of my family members, and as I said, I cannot understand why her docs are not responding to her not being able to keep anything down after she's gone and had gastro surgery, for heaven's sake!  And the pain, particularly all these months after surgery, is a sure-fire indicator that SOMEthing is amiss.  I wish you the best in getting your daughter the help she needs, and let us know what you decide to do and what happens, whenever you have time.
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Hi Greg,
My daughter was just diagnosed with SMA Syndrome. We have been searching for doctors who specialize in SMA. How did you get your info?
Thanks for posting!!
Elisa
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