Gallbladder removal to treat cyclic vomiting syndrome?

[itsaholliday]

My 17 year old son has suffered from cyclic vomiting syndrome (CVS) since he was a toddler.  He has had all the standard tests to rule out other causes, the most recent being a HIDA scan of the  gallbladder and biliary system.  The scan showed normal structures, and no evidence of stones or obstructions, but a contraction rate of only 30%.  He has never had RUQ pain associated with his vomiting episodes, nor at any other time.  Nevertheless, his doctor has scheduled him for a cholecystectomy (gall bladder removal).  My son is understandably willing to try anything that might resolve his CVS, but I question whether there is any reason to think this surgery will help.  I am also concerned that he may have problems after the cholecystectomy, since he will have many years to live without the normal services of his gallbladder.  

It seems to me that his doctor is just grasping at straws to  find something that might help the CVS.  However, I have searched the internet for many hours, and I can't find a single reference to link poor contraction rate of the gall bladder to CVS or vomiting, nor can I find any references that indicates cholecystectomy is in order when RUQ pain is not present, and the gall bladder has always been asymptomatic.

My son's symptoms are consistent with the clinical picture of CVS described on the website, www.cvsaonline.org, and there is a family history of migraine on the maternal side, as is common with CVS.  One symptom my son has that is not mentioned prominently on the CVS website is a sometimes lengthy prodromal period where he belches a sulphurous smelling gas, sometimes for hours before the vomiting starts.  The vomitus then contains completely undigested (i.e., recognizable) food particles, even when his last meal was as much as 24 hours prior to the first vomiting episode, and no noticeable bile.  Does this symptom imply gall bladder involvement in the CVS, or is it just an indication that his digestive processes temporarily comes to a halt in the hours prior to a vomiting attack?  I should  mention that his attacks have become less frequent as he approaches physical maturity.  He went 8 full months without an attack  (until this month), even though he was under considerable nervous stress during the period of remittance.  His attacks used to occur at least once a month.

I would be grateful for your opinion about whether cholecystectomy is really indicated for my son at this time, if his only gall bladder dysfunction is the 30% contraction rate. I would also like to hear your thoughts about the relationship, if any, between the gall bladder and CVS, and your thoughts about the CVS itself.   Is this prodromal period (with the foul belching) typical of CVS, or perhaps an indicator that we should be looking elsewhere for answers?

[dannyhyche]

A related discussion, Help was started.

[nancy0127]

A related discussion, A question that hasn't been answered about CVS was started.

[janice clare]

I have had numerous tests ordered by a gastroenterologist but all have been perfect.  My symptoms are consistent with cyclic vomiting syndrome.  I am now seeing an endocrinologist to determine if I could have a small tumor producing an excessive amount of a gastric hormone such as gastrin.  The testing process for this seems to be taking a 24-hour urine sample during an attack, which will be a tedious process since he is only testing for a limited amount of gastric hormones (2-4) during each test.  It is my understanding that if I show an elevated level of a hormone such as gastrin, then he will try to locate the tumor through some type of imaging process and remove it surgically.  I have a very typical case of cvs in an adult, with each of the phases described in the literature regarding cvs.  I also have the burping of an extremely sour taste that occurs prior to the actual attack.  I have tried traditional methods to stop the attack once I sense it coming - phenergen suppositories, zofran pills and sublingual, protonix - but nothing seems to effect the attack.  I am interested to know if anyone else has followed the above protocol for testing for excessive gastric hormones and with what results.  I am sick and/or recovering for 2-3 days every five weeks.  I have had 7 attacks so far.

[janice clare]

I have had numerous tests ordered by a gastroenterologist but all have been perfect.  My symptoms are consistent with cyclic vomiting syndrome.  I am now seeing an endocrinologist to determine if I could have a small tumor producing an excessive amount of a gastric hormone such as gastrin.  The testing process for this seems to be taking a 24-hour urine sample during an attack, which will be a tedious process since he is only testing for a limited amount of gastric hormones (2-4) during each test.  It is my understanding that if I show an elevated level of a hormone such as gastrin, then he will try to locate the tumor through some type of imaging process and remove it surgically.  I have a very typical case of cvs in an adult, with each of the phases described in the literature regarding cvs.  I also have the burping of an extremely sour taste that occurs prior to the actual attack.  I have tried traditional methods to stop the attack once I sense it coming - phenergen suppositories, zofran pills and sublingual, protonix - but nothing seems to effect the attack.  I am interested to know if anyone else has followed the above protocol for testing for excessive gastric hormones and with what results.  I am sick and/or recovering for 2-3 days every five weeks.  I have had 7 attacks so far.

[Kevin Pho, MD]

Hello - thanks for asking your question.

To my knowledge, I am unaware of a connection between the gall baldder and CVS.  As you know, there is a known connection between migraines and CVS.  There is a theory that the manifestation of CVS may be a form of an "abdominal migraine".

There are no controlled trials that suggest an efficacious therapy for CVS.  In patients with a family history of migraines, it is reasonable to try anti-migraine medications.  Sumatriptan, erythromycin, oral carnitine, propranolol, cyproheptadine, and tricyclic antidepressants have all been tried with varying success - there are small studies suggesting possible benefit.  You may want to discuss these medications with your personal physician.  

As for the cholecystectomy - I was unable to find data that it would directly impact the CVS.  If there are any doubts, I would seek a second opinion at an academic medical center.  

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.

[surgeon]

I will state that my professional knowledge of CVS is probably less than yours; however, I've done lots of gallbladder surgery. An ejection fraction of 30% is barely below normal, and may have little if any significance. I have been very reluctant to remove a gallbladder for that level of function alone, especially without associated pain syndrome. Add that to the fact that his episodes seem to be becoming less frequent, and if I were his surgeon I'd advise against it. Side effects from gallbladder removal are infrequent, but given a mysterious syndrome and no definite relation to his gallbladder, there could be as much a chance of making things worse as there would be of making them better. I share your skepticism. At least get another opinion, perhaps from a "tertiary care center," meaning a university or major hospital/clinic where they get referrals for unusual situations.

[surgeon]

P.S. If you haven't already, perhaps you should contact the program mentioned in the website you cited: ***@****