A little worried...

iVillage Member
Registered: 08-31-2004
A little worried...
8
Wed, 11-16-2005 - 1:02am

Two years ago, a benign cyst was discovered in my son's cerebellum (the part of the brain that controls gross motor). It was discovered by accident, when during an MRI of his spine, his brain was also scanned by mistake.

It was deemed to be benign, as I said, and the neurologist brought him back for two more MRI's at six months and one and a half years after the original MRI to make sure that it wasn't growing.

His last MRI was in September and it showed that the cyst had reduced in size markedly. We were all very happy to hear this. The neurologist told me that he did not need to have any more MRI's unless he showed symptoms. So I thought I could push that niggling worry to the back of my mind. Sigh...

About two days ago, my son told me that sometimes he feels like he is about to fall down. He couldn't really describe it, but told me that it happened when he was just sitting still. So it sounds like vertigo, maybe?? Not wanting to over-react, I told him to try not to worry about it, but if it happened again, to let me know immediately. Then, yesterday, he told me that his arm felt funny. I asked "How do you mean? Is it asleep?" And he said no... that it just felt floppy.

So I called and left a message at his neurologist's office. The nurse called me back this morning, saying that the doctor wants him to have an EEG right away. So we went in this afternoon (I pulled him out of school) and had the EEG done. Later, my son told me that he had experienced that feeling of being about to fall during the EEG. So... I guess that could be considered good (although I was just wanting it to go away forever and be a 'mystery!') since now I can tell the neuro what he said, and see if anything shows up on the EEG (which measures brain activity).

We will not know the results of the EEG until Friday, when we have an appointment with the neurologist. I am praying that this is just nothing important.

I am frustrated because, since I don't have any kind of name for what he is experiencing, I don't even know how to search for information about this on the net - I feel like I can't do ANYTHING - just wait. I hate that.

Thanks for listening,

Susan

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iVillage Member
Registered: 01-17-2000
Wed, 11-16-2005 - 9:42am
((Susan)) How very scary! I hope they can figure out why he is having these strange feelings and that it is nothing serious. Maybe just related to the cyst but nothing that is or will develop into anything further. I pray you get good results back from the tests.
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iVillage Member
Registered: 06-20-2000
Wed, 11-16-2005 - 10:44am

Hugs to you! It may be a good thing that you can't search on the net - seems the more "research" folks do on the web, the more frightened they can become, as all worst-case scenario stuff is on there, too.

Warm thoughts to you, this must be a very anxiety-producing time... hang on till Friday, here's hoping it's something easily fixed...

iVillage Member
Registered: 03-25-2003
Wed, 11-16-2005 - 10:58am

Waiting is

     Lisa
and her two "whirlwinds"
     DS-13 & DD-9

iVillage Member
Registered: 08-31-2004
Wed, 11-16-2005 - 5:12pm

Hi Everyone and thanks for the words of encouragement. I just don't know what to think. I am watching DS running around the house, playing with his sister and looking just perfectly healthy and I can't really believe that anything might be wrong. But I can't really take a deep breath (literally) until I hear what is going on at the appointment on Friday.

I thought I was handling my inner panic pretty well, until the doorbell rang a few minutes ago and there was my son - home from school! I was supposed to meet him at the bus stop but completely forgot! I have NEVER even been late to meet him at the bus before! I have got to get a grip.... Luckily our neighbor walked him home for me, and realistically he could have walked home by himself, but still!

Susan

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iVillage Member
Registered: 03-27-2003
Wed, 11-16-2005 - 7:39pm

Oh Susan, I am so sorry that you have to go through this. I agree withthe lorax. Sometimes the web offers information that is more harmful than good and we really don't know how accurate it is. Try to think of it this way....the neurologist wasn't worried from the beginning and was on top of things. This was probably a precaution and because he/she is so thorough, they called it in right away. Try to remember, things don't always have to be so terminal. He could be having panic attacks. He could be having sinus related issues. He could be doing some movements that are causing him some akward growing pains. You just never know.


It's hard to focus when your baby is needing attention. Try not to be so hard on yourself. Maybe you could get some back ups in place just in case you need a moment, KWIM?


I will definately say a few words to my highest of the high. =) HUGS and PLEASE let us know about the results as soon as you know.

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Avatar for nlas99
iVillage Member
Registered: 03-27-2003
Wed, 11-16-2005 - 7:44pm

Just wanted to say I sent a prayer up for your son, that this episode is nothing. Praying that it's God's will that the dr's will find nothing, or if there is something that it is minor, they can get rid of it and there will be no ill effects on your son.

Also praying for your peace of mind over these couple of days. I'm sure you will let us know as soon as you can.
Lynn

Lynn
iVillage Member
Registered: 04-04-2003
Wed, 11-16-2005 - 9:45pm

Hi Susan,
Is it by any chance an arachnoid cyst? My 4-year-old has these. Cysts can cause symptoms that would not show up on an EEG--not problems with neurons firing but more "mechanical" symptoms that are caused by pressure on certain areas of the brain, if that makes sense. Has your neurologist suggested seeing a neurosurgeon? In our experience, neurologists' and neurosurgeons' attitudes toward cysts can really vary. Does your son have headaches?

I have *way* more experience with neurosurgeons/neurologists, and have done *way* more research on the brain than I ever expected, so I'd be happy to answer questions or help in any way I can, if you think it would be useful.

~Lynn

iVillage Member
Registered: 08-20-2003
Wed, 11-16-2005 - 10:59pm

Oh how incredibly scarry this must be for all of you!


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