4 yr old with chiari having seizures

[Adrianskye]

My 4 yr old son has Chiari malformation. He had decompression surgery and cauterization of his cerebellum because it hemorrhaged out of the opening. A lot of his symptoms went away for a while besides his absence seizures. Some symptoms are coming back like feet hurting, bad neck/head pain, losing balance sometimes. Anyways last night was very strange, he was conscious but shaking uncontrollably for around 8 to 9 mins. After his shaking stopped he went back to sleep. He spiked a fever and starting vomiting out of no where and would jerk every once in a while. I am not sure if this was a seizure or not. I am in the process of finding him a neurosurgeon to see where we moved to. If someone could shed some light and let me know if they think he had a simple complex seizure I would greatly appreciate it. Another question is my 9 yr old son is now complaining of head, neck, back, and leg pain. he had a CT scan and now doc wants a MRI, but will not tell me what was seen on CT scan. I know Chiari is rare so could both of my sons have it? Thank you in advance!

[MakerofJacksBrain]

I'm in Colorado too and have had similar issues finding good doctors who realize how sever these symptoms can be.  My son is scheduled for surgery on Wednesday October 15th at Children's Hospital in Denver- our doctor is the head of neurosurgery there and while we feel confident on his surgical skill set we are still struggling with his realization of the pain my son feels. He told us we needed to "desensitize" ourselves as adults to his pain complains- I feel very differently that pain should always be addressed and treated in young children. Praying we get the care we need.

[selmaS]

  My Deepest Sympathies on  the loss  of your mother.,...I have no idea how hard that must be with small children to raise and not have your mom to lean on...But if  I can help....I will the  best  I can,,,,

  No worries..you are doing great....

[Adrianskye]

Ok, Thank you again. It is nice to get some positive feedback. I feel like I have been fighting this with my children alone. No one really seems to know much about it. I have educated my self the best I can, but have come to a point where I needed help and advise. I do not have my mother here with me any more, she passed in 2007. It is really nice to have someone to talk to about this that can actually help. You are a godsend!

[selmaS]

Adhesion's  can be scar tissue that forms....arachnoid is a layer of membrane that surrounds the brain, there are 3 layers with the arachnoid being the middle  layer.....they can be the beginnings of a syrinx.....these adhesions as they multiply can form into a syrinx.

  Since  they were removed that should be ok, if they got them all,.....A Dr would be better to inform you on this,.

[Adrianskye]

One more question...I can not really find much info on the arachnoid adhesions that were removed. What are they?

[selmaS]

No  worries.

[Adrianskye]

Thank you so much for the help and info.

[selmaS]

It was on page 2 of the forum's thread....http://www.medhelp.org/posts/Chiari-Malformation/-List-of-Chiari-Drs--USA-2013-2014/show/2046186

  You have every right...and trust me a few thought I was crazy pushing for the  answers for myself,....

   Remember the Drs  work for us....and we can fire them...you know your kids better then they do....

[Adrianskye]

No I have not. Can you give me a link to the doctors please? I am just so worried about my boys and the doctors here do not seem to care. They think I am crazy because I go in telling them what is going on and what I think should be done. I am a very young mother and I intimidate the doctors. I just want the best care for them. I also have a 5 yr old daughter, but she is not having any symptoms.  

[selmaS]

  Have you tried Dr Frim in Chicago?.....We do have a list...it is not a referral....but you can use it to research Drs,....many of us do need to travel to get to the right Dr,....

[Adrianskye]

Colorado, and I am having no luck finding a good neurosurgeon.

[selmaS]

Follow your gut...get another opinion....

May I ask what area you live in?

[Adrianskye]

The blue gel dura patch was used on him. I saw his mri and I thought I saw some syrnix in his spine as he had a complete mri after surgery. Also it looked like fluid buildup around his cerebellum, but doctor said everything looked fine. I don't think everything looks fine.

[Adrianskye]

Also in his surgical report it says he had excessive fluid in 4th ventracal, but he did not place a shunt. Also his brainstem is tangled in ligiments.

[selmaS]

I would think it was a seizure until you are told other wise....

So the dura was opened....what type of  dura patch was used?

Did  your 4 yr old  have a syrinx?.....and were the related conditions ruled out?

[Adrianskye]

I have a lot of migraines and tension headaches. I also have DDD and an extra vertebra in my tailbone. My 4 yr olds decompression surgery, they removed part of the posterior fosfa  (not sure I spelled correctly) and part of his top vertebra. They opened his dura and it hemorrhaged out really bad. The pre surgical MRI showed a 15 mm chiari extension into his neck. The doc said he did not expect it to be so bad. He also had complete brain compression that caused archinoid adhesions that were removed. I have all of his records. My 9 yr old is about to get a MRI to see if he has it also. I have been told by lots of doctors that his seizures are not related, but I'm not to sure about that. Is it possible that what happened to him last night was a seizure?

[selmaS]

Hi and welcome to the Chiari forum.

  First...Chiari is not rare...well informed and experienced Drs are.

There have been some that have had seizures with Chiari,some developed epilepsy post op.

It is really important to get copies of all MRI's...and the reports as they contain the info you will need to  locate the right Dr.,....not all Drs really know how Chiari can and does affect us.....

Do you know what all was done  during his surgery? Decompression can done a few different ways...a less invasive procedure is often done with Children,....a bony decompression where the dura is not opened...unfortunately this may need to be redone and  sometimes soon after the first surgery.,...as it may have prevented a CSF leak at the time of surgery, but it may not have provided enuff room and the same symptoms may reoccur.

Chiari does tend to run in families so, it is possible your other child has it as well....

Make sure testing for a syrinx,is done,MRI of cervical,thoracic and lumbar spine,,....and that ALL related conditions are ruled out.

Sleep apnea,tethered cord,ICP,POTS,CCI,Ehlers-Danlos....disk issues,,,
Vitamin levels should be tested...vit B12,D, and minerals  magnesium and  potassium.

So sorry possibly both children are dealing with these issues/conditions...do you know if you or your partner may have it too? Family history of headaches,joint pain,  seizures  etc....