Day 350- NINDS

A very interesting question was sent my way via Twitter a short while ago. The mom of a child with spina bifida, hydrocephalus, and epilepsy asked, “Does having spina bifida, hydrocephalus, or seizures hurt?”

So far, this is the information I’ve been able to gather to begin to answer this query. Almost immediately after sending out this question into the vastness of the Twitterverse, a reply came! @theeppilepsyguy responded, “Depends on the type of seizure, grand mal seizure can cause muscle to hurt after contracting and relaxing from convulsions.”

“The Epilepsy Guy,” whose real name is Richard, makes and sells T-shirts for epilepsy awareness. Check out his merchandise here. He donates 70 percent of all profits toward epilepsy research. I thought this was a venture worth sharing.

Now, to go back to @omgmom’s other questions: does having spina bifida hurt? Does having hydrocephalus hurt? Yes, and no. The easy answer is: it all depends. I’ve had headaches on occasion that are shunt-related, but that are not necessarily indicative of a malfunction or an infection.

Sometimes, a change in the weather or in air pressure (if you’re flying on an airplane) can trigger a shunt headache. I don’t think it’s necessarily something to be too concerned with, unless the headache persists after landing, or after scuba diving (water pressure can trigger it, too). To give a very unscientific opinion, my best guess is that it’s just our inner hardware responding to the changes in the environment, the same way that sometimes wood will make strange creaking sounds when it’s humid.

As far as the spina bifida itself is concerned, I don’t think it should hurt. Unless I’ve been walking a lot and am very sore (just like anyone else who does any form of strenuous exercise), I don’t normally experience back pain. I did have frequent, severe back pain when I was about 12 years old, and I was diagnosed with tethered cord. This is a serious problem. If you/your child/friend/relative with spina bifida are/is complaining of persistent back pain, you might be having symptoms of tethered cord. This is a neurological condition that occurs when there is a spinal cord lesion and the cord attaches to tissue on the inside, causing the cord to stretch abnormally. This can lead to paralysis.

Fortunately, I had a surgery for tethered cord release shortly after the symptoms appeared, and I haven’t had any major problems with my back since then. You can learn more about tethered spinal cord syndrome at the NINDS Web site.

In light of these new insights, I’m writing to the National Institute of Neurological Disorders and Stroke (NINDS). They have an advisory council, so I will probably try to contact a few individual members and tell them about Holdin’ Out for a Hero. It’s important to me to reach out to these research-oriented organizations, especially since their main goal is education, and awareness falls directly into that category.

Remember that anyone who has questions related to spina bifida or hydrocephalus can E-mail me at, and I will attempt to answer your questions to the best of my knowledge, or as in today’s case, I will try to find someone more knowledgable about the subject than I am.

Peace Out,

Laurita ♥



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