Sibling w Chairi

[buckeye4]

My son Jack had his surgery 6weeks ago for the Chiari w Syninx. He has done wonderful.  I'm sorry for not getting back with you guys but as you know it has been very stressful here at home.  I thank God everyday for Jack and the Dr Oak's team at UAB. Jack is back to full activity and has told me that his head doesn't hurt anymore.  Now...Dr. Oak's wanted Christian Jack's brother to have an MRI. Got that back 2weeks ago.  He also has Chairi 7mm but no syrinx.  However, Christian has fine motor delay, dyslexia, development delay and now the school feels he has  ADD. which my husband and I feel he may have as well. We have appt. to see Dr. Oaks (Chief of nuerosurgery) and Dr. Derer (Chief of nuerology) 11/21/2012. Not sure but looking things up and let me know if I'm wrong but Chairi can cause some if not all of these issues. Also on his MRI it did show a "Solitary 5mm focus of increased T2 signal involving the right parasagittal corpus callosum anteriorly. The radiologist stated this may simply reflect localized gliosis at a site of remote insult". Not sure what all that means but also said follow up is recommended in 3-6 mos. to confirm stability.  Not sure what we're looking at this time around. Seems like Jack's was cut and dry He had to have surgery to prevent paralysis and other complications. Can you help shed some light on this situation?

Thanks,
Buckeye4

[buckeye4]

Thank you. I will keep you posted and let you know what happens. I trust Dr. Oaks the Neuro surgeon and we met with the NL when Jack was being looked at. I hope they can sed some light on all this.

Thank you,
Buckeye4

[selmaS]

  Knowing he has Chiari, but no syrinx does not mean no surgery....u need to find out if he has a CSF obstruction which could lead to the formation of a syrinx....a CINE MRI is done, it is a MRI in real time, a movie instead of still pics to see if there is an obstruction or if the tonsils pulsate with the BP....surgery may be done if an obstruction is found to prevent the syrinx from forming and it is the obstruction of flow that can cause many of the symptoms.

Now if he does not have an obstruction, they may say to do a wait and see with some monitoring and a NL would bet he one to go to for the other issues he already has...a NS only treats with surgery...and once the incision is healed u r no longer a patient, so it is good to find a good NL that understands all of this as a way to oversee it....sometimes a good PCP will do.

  Again it may be a wait and see, and u may have to go by his symptoms....so use a journal to track his moods and how he does in school etc.....

I know it is not easy at ne age to process this...but younger then 6 have been treated and they do respond well to treatments if that is what is needed....they r too young to communicate verbally so many times they act out how they feel,....so bad behavior in a normally good child could indicate an increase in pain or discomfort and the child may not realize it to  articulate it.

Please keep us posted.

[buckeye4]

Thanks Selma, this one is just new to us. Not sure if Christian wil need surgery but concerned that we don't over look his issues and that Chairi can be involved. Question... If the Neurosurgeon can't help with this is it possible the neurologist could have answers. I know some people with Chairi don't require surgery but once you know you have it what do you do with it? Nothing?? until something happens? Also, Can chairi get worse or could syrinx happen out of the blue. These are questions that I have since I know Christian doesn't have the syrinx now. He's 7yrs old and Jack is 6 yrs. How does one process this?

Buckeye 4

[selmaS]

  Hi and welcome back !! Thanks for the update on Jack.......glad to hear he is doing so well.

I am sorry to hear his brother Christian also is dealing with a Chiari dx.....

and I wish I knew more to answer ur questions on the corpus callosum...all I know it is a bundle of nerve fibers under the  cortex....and I know that does not help.....basically it is the comunication center for the left and right hemisphere of the brain....could indicate his fine motor delays and dyslexia.

As for some of the issues being Chiari related  the ADD could be.....he has other issues that Jack did not.....and does not have all that Jack had going on....u really need to wait for the NS on this one.

  Please keep us posted it may not be as much as u r thinking. <3

  ((hugs))