Swallowing Problems?

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Swallowing Problems?

Postby brianfsmom » Wed Jul 22, 2009 6:17 am

Hello all, it's been a while, been enjoying 'normal' life.

My son, almost 14 now, was decompressed 4.5 years ago for Chiari 1 with syrinx. Syrinx shrunk initially, then remained stable and he is basically asymptomatic with a few strange things here and there; nothing to worry about so far.

On Thursday, he was in a swim race when he got the feeling that he couldn't swallow. It passed, but returned a few times throughout the next few days until yesterday, when he got the feeling that he couldn't swallow and then got very nervous, and it persisted. He asked for water, then said that the water made his throat burn. This was about an hour after a meal, and he was riding in the car (he usually is fine in cars). I called the neurologist, who asked how he seemed, and I said he seemed nervous, so he said not to do anything but rather not to cause panic about it, and see if it will pass on its own. We see him anyway in three weeks for our regular appointment.

When Brian was in the hospital when he was 9, he remembers a baby being admitted with great concern because he couldn't swallow; so when this feeling returned, Brian became worried that he would choke to death. I reassured him that it's just a sensation, that he actually CAN swallow, and that he can breathe. Gradually the feeling improved. He sucked down a chocolate milk with a nasty looking cheeseburger, and he was fine.

After dinner, which was chicken and macaroni salad, he said the feeling was back a little, as if something was stuck in his throat. Later in the night, he said he had a burning in his chest. Two other things that may be of interest are that he has NEVER been comfortable eating meats like steak and pork, that have to be chewed a lot. He's never had trouble with anything else. And also that he has no new problems with actually swallowing the food. The issue comes afterwards.

So - a little long-winded, but there it is. Has anyone experienced this with chiari? I am hoping that whatever it was that set off the initial episode just triggered some anxiety and this is the root of it, but of course he does have chiari and I have to consider that as well. It's been a year since his last MRI, they are basically not changing year to year but he has grown a lot this past year, and also had one concussion several months ago when he hit his head at school. I guess I'm just trying to put my mind at ease; although the only way that will truly happen will be if this symptom goes away and stays away!

Thanks all!
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Re: Swallowing Problems?

Postby Sara » Wed Jul 22, 2009 8:20 am

dysphagia is the term for difficulty swallowing. It certainly can be related. There are specific tests that can be done. email the office at info@asap.org and ask them if they have a lecture they can send you from a previous conference. I believe we had a presentation on it but I'm not certain. And I'd talk to your doctor about seeing an ENT or ordering swallowing tests that will help determine what's going on.
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Re: Swallowing Problems?

Postby lcolangelo » Sun Aug 02, 2009 12:17 pm

Yes my 10 year old daughter who has had 4 decompressions, has swallowing problems. Very often she complains of food getting "stuck" as she puts it. It happens with different foods, but often meats and pasta. It's painful, but usually passes after several minutes. Before her most recent decompression in November, it was very bad and she also had the burning/hurting sensation in her chest. The swalloing did improve slightly after her decompression, but still remains a problem. Hope all goes well with your son.
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