Mom with a question

[jaime0924]

Hi everyone....I am a scared mother.  My son has a mild CP, a seizure disorder, and a mood disorder.  Recently, as a follow-up brain MRI from 5 years ago, my son's neurologist found this chiari with a syrinx.  This area also has diminished CSF flow and he has referred us to a neurosurgeon.  Many of the symptoms of the chiari are symptoms my son has had and I had relaed to the CP or the psych meds.  Now I am confused as to what the malformation may truly be causing and what really are things that his other health issues are causing.  Do these typically require surgery?   I have an appt with the surgeon in a week to figure it out...but my mind won't let me think of much else.

Thanks for your time, Jaime .

[selmaS]

  Hi....this happens a lot with Drs not telling us about what is on the MRI's when it concerns Chiari...too many r not educated enuff on how it affects us, so they consider it an insignificant finding and do not report to the patient.

As for the timeline of 6 weeks...it could be longer....we r all diff and heal at diff rates and it is hard to know b4 he even has surgery as to when he might be out of school.....

U may want to consider a tutor for when he is ready b4 he goes back...as it will take time b4 he will be able to go full days......

AS for how long u can wait, u need to know how it is affecting his over all health....does he have an obstruction...

Did u see a chiari specialist?,.....

Waiting until things get worse could be a decision u may regret as u never know how waiting could affect him either....

U need a well informed Dr to let u know just how imperative it is for surgery and how  a wait could affect him.I am feeling by these questions, the Dr u saw did not answer ur questions, and left u with more....

I would suggest u may need another opinion.....

[jaime0924]

Hello everyone...
So the neursourgeon thinks that the chiari is turning "problematic" and that surgery may be something to think about.  My mother, doctor and I talked about the details of the surgery.  I am to get a new C-spine MRI of my sons neck in a few months and followup with the neurosurgeon.  I'm not real sure why.  I'm assuming it is to see if the syrinx grows.  I was baffled to find out that the chiari WAS on the brain MRI in 2007.  My son's neurologis said it wasn't.  I was also surprised to here my son would be "off his feet" for 4-6 weeks, including no school and only half days when he would return.  My son has an IEP with school and it is very difficult to stay on top of things...let alone if hes off the radar for 6 weeks.  I will do some serious thinking about the need for the surgery and then if it is decided upon, I would elect to do it over the summer break.  What does everyone else think?  These things stay the same or get worse right?  Should I wait until side effects are markedly worse?  Thoughts please...

[selmaS]

  Good Luck Monday...do post updates on how it goes <3

[jaime0924]

Thanks for your comments.  I have been doing online research.  I know have a list of things that I will question the neurosurgeon about when I see her.  Possible side effects of the chiari and syrinx that I want to see if she thinks is related.  Did I mention that my son also has a brain structural deformity called cortical dysplasia in his right frontal lobe...something I have been told is probably responsible for the CP and the seizures.  I highly question the sleep apnea.  My son has become a hellacios snorer over the last year!!!!  He also periodical wets the bed, frequesntly slobbers himself, has the fine and gross motor issues, the list goes on and on.  Again, thanks for the support.  My appt with the seurosurgeon is MOnday...I hope I get more info.  And Viv, my son is 15.

Jaime

[selmaS]

  Hi and welcome to the Chiari forum.

I have to echo Viv's comments in that many more of the pediatric NS's seem to be more aware of Chiari and how it can affect the patient then the typical NS.

That said, I still feel u will want to get opinions from a pediatric NS that specializes in Chiari and Syringomyelia as he has both. These two conditions could be the cause of many of his symptoms, but not knowing what all he is dealing with it is hard to really say, but many with this can and do have seizure disorders....

As for the need of surgery....the fact he has a CSF obstruction is y he has a syrinx, and left untreated a syrinx can continue to grow and could lead to perm nerve damage even paralysis.

Make sure with all that is going on with him he is checked for other related issues like sleep apnea, disk issues, tethered cord, ICP,POTS, ehlers-danlos......

  Surgery is usually suggested when the CSF flow is affected as it is done to help prevent the formation of a syrinx, and  restore flow ,when one is present they also choose surgery as restoring flow may help the syrinx shrink.....

   As with all major surgeries there r risks, but surgery is only suggested when the benefits out weight the risk.

  This is not an easy journey....and all u can do right now is educate urself on what Chiari and Syringomyelia are, how they may affect him and find the best Dr that is well experienced with these issues.

Also know u r not alone... : )

[Viva001]

I'm so sorry for your son's health problems and your anxiety.  How old is he?  

I dont know if this is true across the board, but it seems to me that pediatric NS's are more educated about Chiari than the others--except for the few experts.  You may very well find out that his symptoms were all or mostly due to the Chiari malformation.

Best of luck to you sorting it out.  There are other mothers here who can help from experience, but we will all be supportive.