Stomach Pain is Brain Shunt-Related

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Stomach Pain is Brain Shunt-Related

Post  LynelleH on Thu 18 Nov 2010, 4:55 pm

It turns out the stomach pain I have been having is related to the plastic tubing that routes the cerebral spinal fluid from my brain to my abdomin. The tubing has become disconnected. I have a call in to my neurosurgeon to see what we are going to do about this. The kicker is---he is closing his practice December 16 and leaving the state for a new position elsewhere.

I have too many "if's" and "how serious" questions going on right now, on the eve of a camping trip, and the week before a 5-night trip to San Diego.

I am scared to death of surgery---literally. I survived a pulmonary embolism 2 days after the original surgery to put in the brain shunt. I would insist on prophylactic lovenox prior to the surgery to repair this tubing.

Just too many questions. I need that neurosurgeon to call me back.
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Re: Stomach Pain is Brain Shunt-Related

Post  Angela on Thu 18 Nov 2010, 7:40 pm

what a nasty position to be in. Knowlege takes away the fear. Hope he calls soon!
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Re: Stomach Pain is Brain Shunt-Related

Post  milo on Thu 18 Nov 2010, 8:13 pm

I wish I could give you some answers...or make your phone ring. I'll be thinking of you.
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Re: Stomach Pain is Brain Shunt-Related

Post  Paradox on Thu 18 Nov 2010, 8:55 pm

I've heard of a Dr that has email for his patients and actually answers them by email everyday. Can you imagine the luxury of knowing that 1) the Dr got your message undiluted by the nurse or receptionist and 2) you would get a response that day? The stress of waiting for the phone call has literally had me in tears by the time someone bothered to call me back.

Your mind must be swimming right now. Are you in a metropolitan area where it will easy to find a new neurosurgeon or will you have to travel?

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Re: Stomach Pain is Brain Shunt-Related

Post  Topix on Fri 19 Nov 2010, 9:34 am

You have all my sympathy, I hate to wait for answers by doctors...

I hope that they can find a good solution that avoids you surgery.

Keep us posted
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Re: Stomach Pain is Brain Shunt-Related

Post  LynelleH on Sun 21 Nov 2010, 11:05 pm

Thanks for the support, everyone. My surgeon emailed me while I was gone. His email was dated Saturday, and I came home Sunday night. He has instructed me to make an appointment with his assistant for Monday morning and bring my films from the x-ray and upper GI with me. While I appreciate his willingness to get the ball rolling, I don't know how easy it will be to get the films that quickly.

My stomach pain escalated Friday night and into the weekend, but also has periods of no pain at all.

I have almost come to terms with the fact that some type of surgery is in my future. I will see how the office visit goes and go from there.

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Re: Stomach Pain is Brain Shunt-Related

Post  LynelleH on Mon 22 Nov 2010, 4:34 pm

Update: completely different story: the doctor that read my films thought I had a different shunt that what I actually have and my shunt and its tubing are fine. My neurosurgeon's assistant looked at the xrays and determined that the tubing is properly connected and the pain needs to be assessed by a general surgeon to see if the tubing is bumping into adhesions. If so, the surgeon can clean it up during a laproscopic surgery. If not, on to another plan.

All that worry for nothing.

In the meantime, my neurosurgeon is going to ponder the possibility of a colleague taking out my shunt system after January 1 (new insurance plan in place then). We think it's time. I have lost weight, that is the main thing. We think I no longer have intracranial hypertension. I guess there are steps to take prior to taking out the shunt, and you can't just jump into it. So, he is thinking it all over first.

For now, I just tolerate the abdominal pain. There is no real danger to anything, which really puts me at ease.
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