Does anyone have a symtoms involving twitching of the head?

Question

My 7 yrs old son was dx with Chiari 1 in March of 09'. His symptoms include head and eye twitching with occasional headaches.  I was sent to a NS who told us his CSF was very restricted but at this time no surgery.  We would continue to monitor.  The last 5 days the head twitching has gotten progressively worse, 13 times in a 30 minute time period. The teacher noticed it at school (she knew nothing of him doing this) and told me he did it all day long and had a very hard time concentrating.  I called the NS and spoke to the nurse who proceeded to tell me I could googe Chiari on the internet, which my reply was I have and can say I have educated myself pretty well. She then told me twitching was NOT a symptom.  The twitching was why the MRI was done in the first place.  So my question is does anyone have twitching of the head (moving back and forth in a rapid motion almost as if he got hit in the head and is shaking it off) as a symptom?

Thanks
Wendy

selmaS · Answer

Hi and welcome to the Chiari forum.

May I ask, when was ur last MRI?...were u checked for a syrinx or other chiari related conditions?

It is possible to have something else in addition to chiari, what tests have u had to rule other conditions out?

"selma"

dr7854 · Answer

I am 45 y.o. male with Chiari 1, but also have multiple disc herniations, and had a 2 disc cervical decompression/fussion, still leaving at that time at least 1 additional cervical herniation, along with multiple other herniations throught rest of spine. Have had bouts of severe, violent twitching of head, and at times other body parts, as well as full body violent twitches at times. Not sizzeures, but single violent twitch here, and there. Have not had any Dr. who has been able to pinpont cause, and this has been going on for over 5 years now. Soory I don't have any answers for anyone else, but maybe someone has some thoughts for me. Thanks

Devin215 · Answer

Now that I think about it I don't always have a headache when it happens. Like Selma Mentioned I get both. I get what feels like something jumping or adjusting in my head at the base of my head/ top of my neck and muscle spasms in the side of my neck.....Its hard to explain. I get twitches where my eyes literally move from side to side really fast then I have to re-focus on what I was looking at. I also get twitches in my chin and eye lids on both sides. I also get muscle spasms in my back, calves and legs. I get tremors in my hands too. Now all of this sounds like a lot but it is all erratic and not everyday but all at least once a week if not more depending on what symptom it is. I've found if I am physically very active one day, the next I will have more symptoms....Being inactive to me tends to keep things at an even pace.... That is why I am opting for surgery to get my life back. If your son has restricted CSF flow I think you need to get another opinion...... CSF  is like the pillow to your brain inside the skull and it cushions it and delivers the nutrients it needs......If he falls or is playing sports or just being a 7 year old he needs to have the adequate flow.... PLEASE get a 2nd opinion.....how large is his herniation? Most Dr.s who know what they are doing would consider surgery if CSF if restricted or blocked.....I am not trying to scare you but I was just diagnosed in March also and have found out so much just by doing research here.... Ask SELMA!! she is awesome...... Selma if you could. Maybe give her some more info on the importance of CSF flow....I don't know everything but 1 thing is for sure, having a restricted CSF issue is not good.....Feel free to ask any questions you have ! we are all here to help!!

chiarikidsmom · Answer

Glad to know the twitching is a symptom, for a second I thought I was crazy! 
I will let everyone know how the visits go.  I started a log 5 days ago with times, what he was doing at that moment and how many times he twitched. I am going to show it to the NS when I go.  

Devin215
My son's twitches are side to side as well (people who see this question if he has tourettes) and would only occur when he was active (like playing hockey or basketball). Of course now they are happening when he is talking, walking, playing and watching TV. Not really sure what his feel like, although he associates it with a headache.

Wendy

selmaS · Answer

...mine felt like it was inside my head not visable...I called it tremors...and I had several after surgery and I was told that was me healing.....other than that I had twitches in my lower eyelid and my right hand.

Devin215 · Answer

My head twitches but to the right or the left but not nearly as often as your son.. Id say a few times a day and it feels like a muscle spasm or something jumping in my head causing it to jerk. Hope that makes sense.....

lu7997 · Answer

I have twitching of the eye but I feel it more then it is visible to others.  I am so sorry you and your son are going through this.  The others are right you are among friends here and support with people who understand what you are going through is so important.  I will add your son to my list of prayers all the best for both of you through this rough and difficult time.

That does sound alot like seizure activity.  Most people seen seizures on tv and think of the whole body jerking (that is generally grand Mal and the most severe but it makes for better tv.)  Make sure your NS does not blow this off.  He is way too young to have anything brushed off.  Best of luck to you both

Ange

selmaS · Answer

Hi Wendy....let us know how ur visit with the dr goes......and am so happy u have a dr that seems to be educated on chiari....so many of us have to search for a long time to find one.

I pray ur son's twitches slow down and give him a rest.
Keep us posted on his progress.

"selma"

n40066 · Answer

hi wendy!
i have occasional twitches of my head and eyes but nothing even close to what you are describing with your son.  that must be awful for you to witness your child suffering that way and horrible and confusing for your precious son!  best of luck to both of you next week and i hope your ns fires his receptionist and gives you some concrete answers!!!
elizabeth

ps  welcome to the chiari club!  you are amongst friends here and no questions are off limits!  we all are learning together !

chiarikidsmom · Answer

Thanks for replying to my post.  My son's NS is pretty knowledgable when it comes to chiari but i don't think he is a specialist (he works out of Cooks Childrens in Ft. Worth,TX).  I have an appt on Oct. 23, i just gave up on the nurse and made the appt to see him directly.  During our 1st visit to the NS he seemed to associate the twitches with the Chiari but I will ask him if the thinks these could be small sezuires.

Wendy

selmaS · Answer

Hi and welcome to the chiari foum.
Wendy, she could have told u that many chiarians do have seziures and it could be a type of seziure.

I also believe this may be more common in children with chiari as with adults.....not saying there aren't adults with chiari and seziures...but the percent is larger with children.

Most chiarians had difficulty concentrating in school and then to add the issues of this twitch or shaking ur poor son is experienceing I can't imagine.

May I ask, do u have a chiari specialist for ur son to see?

"selma"