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Since domperidone and metoclopramideher do not work well, she should also take erythromycin. If they don't work, she should have a percutanous venting gastrostomy tube to decompress the the upper GI tract and a percutanous jejunostomy tube to provide nutrition. Another option is gastric electrical stimulation (http://archsurg.jamanetwork.com/article.aspx?articleid=508894). The prolactin level is too high as the side effect of the medications.
I had not heard of erythromycin as a stimulant for gastric motility but have since looked it up, so thank you! One possible suggestion has been to release the median arcuate ligament that is causing the coeliac artery compression, which is a bit different from the venting gastrostomy tube you have recommended. Do you have any thoughts on that? My daughter was referred to an upper GI surgeon who initially was willing to do this procedure but then read the notes, decided my daughter was anorexic and has refused to treat her. A gastric pacer is another treatment we have heard of, and this may be one part of her overall treatment. The thing that is most worrying at this point is the rapid increase in prolactin (nearly doubled in ten weeks) even though her intake of domperidone and metoclopramide has remained fairly constant for the last year. Yet her endocrinologist said she was anorexic and would not treat her either. We are beginning to feel that my daughter is being victimised because of this presumptive diagnosis of anorexia and that her very real, fully documented health problems are being ignored. What would be helpful and would give her confidence to continue seeking treatment would be some indication of the level of prolactin that would unequivocally require treatment. My daughter is courageous and strong, but being continually treated as if she has no veracity when she is in fact suffering a great deal and struggles to maintain her studies (she is a final year graduate medical student) causes me to fear that she will one day give up trying to eat and simply die.
Cabergoline for prolactinoma cause less side effects such as nausea if the dose is gradually increased.
Releasing the median arcuate ligament may be tried if the cause is not known in anywhere else.
She was given a trial of Cabergoline but it worsened the nausea to a dangerous level. Also bromocryptine, with the same results.On the Doppler ultrasound there was a distinct kink in the coeliac artery with impaired flow beyond, which was confirmed by a CT scan. Are there other causes that would give these findings?
Gastrostomy and jenunostomy let her problem relived and gain weight.
Flow in the mesenteric artery was unimpaired.
daibetes, neurological disorders.
I have understood that while weight gain will relieve mesenteric compression, it will not help coeliac compression. Her serum glucose is usually around 4.5 (sometimes less) so I don't think diabetes is a likely cause. What neurological disorders would be involved in coeliac compression?
They are not involved in it.
Her father had a similar condition, although nowhere near as severe. Can structural GI problems be inherited?
I had understood from your answer "diabetes, neurological disorders" was in response to my question "Are there other causes that would give these findings?
autoimmune disease, postsurgery,
If it were autoimmune disease, what antibodies would you expect to find elevated?
Mesenteric ischaemia was discounted because the flow in the mesenteric artery was unimpaired.
scleroderma if she has symptoms
She has not had any surgery. Nor does she have anything suggesting scleroderma, although she does have lumpy rheumatoid knuckles and occasional pain and swelling in knee joints.
medications if she takes any other ones
modt common one is idiopathic
The meds listed are all she takes. Liquid paracetamol when the gastric pain is too severe. She does not tolerate codeine.
amyloidosis and stress also cause it.
multiple sclerosis, too.
If the coeliac compression is idiopathic, what is most likely to produce the best outcome? My daughter is resigned to the fact that she is unlikely to ever have complete control of her symptoms , but even half remission would be very good.
I appreciate that endocrinology is not your specialisation, but I would really like some information on just how high her prolactin level can go before someone is stirred into action.
In celiac artery compression syndrome, the superior mesenteric artery (SMA) and the inferior mesenteric artery are widely patent, thereby, in theory, providing an ample blood supply to the bowel
Some have suggested the symptoms may not be related to blood flow but rather to involvement of the splanchnic nerve plexus, Others have demonstrated an association with celiac artery compression and delayed gastric emptying, suggesting another possible cause of symptoms.
Therefore releasing the compression could improve her symptoms.
So the coeliac compression really needs to be resolved before taking the step of gastic pacing?
It is worth trying it.
Thank you. Now all she needs is a surgeon who doesn't try to have her committed.
Do you have any comments on prolactin levels? "No" is an OK answer if it is outside your specialisation.
Prolactinoma doesn't cause nausea. Once the compress is released, she could take the medication.
No, I think that about covers it. Thank you very much
Are you satisfied with my answer?
Yes I am. Thank you
You are welcome.