Sensory Seizures Post Chiari Decompression in my 7 year old?

General
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Hi All! I have not touched base much since Sammy's decompression, because the news has gone from bad to worse. Sammy's leg pains have continued, and gotten worse. He has had brain and total spinal scans come back clear, and it looks like the decompression was successful. His neurosurgeon has written his pain off as behavioral, which is INFURIATING, and I can guarantee you it's not. When he is not in horrible pain, he is the sweetest, happiest little boy you would ever meet.

One thing that is making Sammy's diagnosis difficult is that he has never had an episode of pain while he was being examined. He will pass every neurological test with flying colors, and be every bit the happiest 7 year old you have ever met. When he is not in pain- he is perfectly normal.

I have been constantly researching every possibility to understand what is causing Sammy's pain. It occurred to me the other day that his symptoms present very much like what I have heard about seizures, and seizure disorders. Especially the part that diagnosis can sometimes be difficult, because a seizure has to happen to during testing.

Sammy has bursts of pain for 1-5 minutes, and then it will stop. It may start again in a few minutes, or hold off for a few hours. The pattern may repeat many times before it stops completely. I came upon information regarding Simple Partial Seizures, specifically sensory seizures, and they are the first thing that I have read that actually sounds like what Sammy is experiencing. He stays conscious, but is in extreme pain. It can start in one leg and move to the other, or be in both at once. If it happens in his arms he loses strength in his hands. It is temporary, and then it over. There is no pattern to recognize. Standing, sitting, walking, playing, eating-- it can happen at any time.
So, my question is: Does anyone have any experience with seizures in relation to Chiari OR post decompression? What about sensory seizures specifically?
We are trying to find a doctor to validate our very real concern for our son, but no one else feels the urgency that we do-- but no one else holds him while he is screaming in pain.
I attached a picture of him and his siblings, so you can see who I am talking about. He is the oldest of 4, and the light of our lives. We will take him anywhere, and do anything to help him.
Any thoughts are greatly appreciated.
Thank you in advance.
477-Sohappytogether.jpg (839 KB)
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I see you live in North Carolina, and I'm not sure how willing you would be to travel to Philadelphia. Our pediatric neurologist at Children's Hospital of Philadelphia is terrific (Harvard Medical School Graduate, 3rd year of residency there) and what I really like is that the entire pediatric neurology team works together to figure out the tough cases. They work with the University of Pennsylvania medical school (literally across the street from CHOP). They have a specialized pediatric epilepsy unit (seizures) that is reknown and the neurosurgeons there do 3-4 chiari decompression surgeries a week, so they are familiar with chiari. I have every confidence that they will figure out your son's problems. Good luck! You are a terrific mom!

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Thank you all so much for replying.

Beeba and Emmaline, thank you for caring about Sammy. He does have a neurologist and a neurosurgeon, but we are looking for a change in both. His followup MRI was done without contrast, but they said the flow looked good. I don't know if that is detailed enough to be sure.They honestly don't care that he is in pain, and just encourage increased medicine.

Joalexa, I am very interested in the neurology team at Philadelphia. Can you tell us who your neurologist is so that we can try to get Sammy's information to them, and see if they might be able or willing to help us?

We are more than willing to travel for the right doctor.

Thank you for your reply.

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Our NL is Dr. Alyssa Rosen. Her contact number at CHOP is 215-■■■■■■■■. I have the upmost confidence they will get to the bottom of your precious son’s issues. Good luck and please keep me posted.

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Thanks Beeba, but everyone on this forum is good people trying to help others. And you’re one of the best! Dr. Rosen tested Alexa for seizures after her complications and that’s how I came to know about the specialized epilepsy program. Luckily Alexa tested clear however we spent over 48 hours with all the gizmos attached to her head and monitors and cameras…you get the picture. CHOP was ruling out everything. It just breaks my heart that a child is suffering so!

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She had the 48 hour EEG to rule out seizures. The wonderful doctors at CHOP believe her stroke like symptoms were due to a large fluid buildup from the surgery. Instead of re-operating, they wanted to try medications that would diminish the amount of CSF produced in order to allow her patch to heal and it worked! Alexa is doing well now, back to school and playing tennis while getting off the medications slowly. She’s completely off the Diamox on Tuesday and off the Topamax in a few weeks (fingers crossed). As any mom would, I consulted with experts across the country and all agreed with CHOP and said we couldn’t be in a better place. As my own mom told Alexa, “you’re mom will leave no stone unturned!” Lol.

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Actually, sensory seizures are a subset of Simple Partial Seizures and they do present with pain in the extremities-- pain is not the most common, but it is documented. I did alot of research before I posted it here. I have spent countless hours in neurological textbooks and online trying to help my son.

Sensory seizures can also result from post operative changes, which is part of why I posted here to see if anyone else had had anything like this in relation to Chiari or decompression. what got me thinking in this direction. He will need and EEG and an EMG (a nerve conduction study regarding the pain), but we want to be sure that we bring him to a place that cares enough to help us find an answer... Also, the EMG is an uncomfortable test -as we understand it- and we want to be sure he is in the right hands. If we just go get these tests and they come back clear without a doctor in our court to figure this out we are back to square 1.

CHOPS sounds like a place with the attitude we need. I am going to contact them today to see if they will review his MRI's and reports, and give us an idea if they think they can help before we travel.

THANK YOU FOR YOUR TIME!! It is greatly appreciated.