Stomach Pain Solved

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Stomach Pain Solved

Post  AZgirl on Thu Nov 18, 2010 3:30 pm

My actual stomach is fine. No ulcer, no bleeding, etc. Thank goodness.

The problem is the plastic tubing from my brain shunt that routes spinal fluid into my abdomin. It has become disconnected and is dumping fluid elsewhere in my body (other than where intended).

I contacted my neurosurgeon's office, who advised me he is closing his practice December 16 and moving out of state. He is referring SOME patients to a certain doctor, and I don't know if I qualify as one that is being referred on to the new doctor.

In the meantime I am waiting for the neurosurgeon to call me back to discuss the whole situation.

Who will repair/replace/correct the tubing?
When will this happen?
Maybe it's time to just remove the whole system and be shunt-free.
Too many variables right now. My mind is spinning.
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Re: Stomach Pain Solved

Post  CluelessKitty on Thu Nov 18, 2010 4:07 pm

Oh gosh. it is always disconcerting when one's trusted doctor is no longer available. I am so sorry it's happening to you Lynelle!
But I strongly hope whoever is going to be next is at least as good as this one was. Fingers crossed!

I am very glad, though, that at least your abdominal pain mystery is solved, and very glad that it wasn't
anything of a additional health problem like ulcer or worse, but "just" related to the shunt.
I hope whatever they'll do, they'll fix it quick, and safely. I wish I could offer more insight, sorry.

Risa
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Re: Stomach Pain Solved

Post  Paradox on Thu Nov 18, 2010 6:16 pm

Congratulations, I think? scratch

I'm surprised the neuro hadn't notified you sooner. I just got a letter from a Dr that I haven't seen in years that he is closing his practice and referring patients.

Any idea how long the shunt has been malfunctioning? What has changed that you think you can do with out it? I'm sure you, like the rest of us, like the idea of as little intervention as possible, so if you can do with out the shunt, then yay!

Is this the same Dr that was always harping on you about weight, etc. even though you were doing a great job of taking care of yourself? (or am I just making that up? I had how foggy I get when headachy).
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Re: Stomach Pain Solved

Post  AZgirl on Sun Nov 21, 2010 10:15 pm

Yes, this is the same doctor who advised me to lose weight, which I have done (close to 40 pounds so far).

He emailed me over the weekend asking me to make an appointment with his assistant for Monday, and to bring the films from the x-ray and upper GI with me (that should be a trick, considering I will have to make those arrangements first). I am curious to see how serious this whole "disconnected shunt tubing" condition is, and if it can wait until after my upcoming trip to San Diego, which I leave for on Tuesday.

The pain comes and goes, and now vomiting is a new symptom, but that was an isolated incident, so maybe it's not even related (my husband thinks it was something I ate).

Yes, I was quite surprise to learn of the surgeon's upcoming departure from his practice. Seems very sudden. Oh well. Perhaps tomorrow I will have even more answers than I have now after meeting with his assistant.

Answers to questions: The surgeon thinks the shunt should be able to come out because I have lost weight, which he thinks has "cured" my intracranial hypertension, therefore makes the shunt unnecessary. The long-range plan was for me to lose another 15 pounds, have a venogram test that measures the pressure around my heart, which correlates to the pressure in the brain, which would tell him if I need the shunt. I had this test before the shunt was put in. Well, looks like we ran out of time for him to wait for me to lose weight. We either take out the shunt now, or pass me off to a colleague.

How long has it been disconnected? I haven't a clue. Anywhere from a month to a year. I have had mysterious side pains for quite a while. I just thought they were side aches because I was out of shape. When they got worse I thought it was from too much NSAID use. Now I've been taking prilosec daily for over 2 weeks, perhaps unnecessarily. My stomach is fine. I asked my primary doctor on the phone if I can resume Aleve usage since the tests showed no damage, and she said no, stay away from NSAIDs just in case. But do I still need the prilosec? Probably not.



Last edited by AZgirl on Sun Nov 21, 2010 10:22 pm; edited 1 time in total (Reason for editing : answered above questions)
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Re: Stomach Pain Solved

Post  CluelessKitty on Sun Nov 21, 2010 11:16 pm

lose weight, which I have done (close to 40 pounds so far).

whoooo, that's quite a feat, so congratulations!

Well good luck Lynelle with whatever's coming up, I am sure they will take a good care of you
and your worrisome symptoms will stop.
In general, it's possible the vomiting is from the shunt too, as I've seen this episode of Little People Big World where Zach was having problem with his shunt as well, and this caused severe
M and vomiting.

Not to scare you, just to let you know it indeed could be connected.
But, then, it of course could be something totally unrelated.
Maybe indeed you just ate something disagreeing with you.
When we are worried we tend to imagine the worst, and more often than not it's something very simple right smack under our very nose, like upset stomach.

Risa
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Re: Stomach Pain Solved

Post  AZgirl on Mon Nov 22, 2010 3:38 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.

Interesting point for anyone with Chiari (Cheryl....)...my neurosurgeon is leaving his practice in AZ to run the Chiari Institute in NY. He brings a lot of experience with him.
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Re: Stomach Pain Solved

Post  Anna's Mom on Mon Nov 22, 2010 8:06 pm

I heard that news last week. I wish him well! And you, too, Lynelle!

Cheryl
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Re: Stomach Pain Solved

Post  VickiG on Fri Nov 26, 2010 1:39 am

Lynelle, I haven't been around lately, so I hadn't read about your stomach problems. That sounds really frustrating! And to have a bad diagnosis about the shunt in the first place! I had never heard that weight gain can cause high pressure. Curious! I'm glad you've done a good job with losing the weight! I know from personal experience (lost 50 pounds in the last two years) how hard it is. I still have another 20 to go, and each pound is getting harder and harder to lose! It's from all the weight gain from all those drugs that never helped but put the pounds on. You all know how that goes!

I hope you find a good neurosurgeon to replace your own doctor and that you have good success. Plus, I hope they figure out what is going on with your stomach now that it isn't the shunt's malfunctioning after all!
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