too good to be true?

[samsam5mom]

So my 5 yr old had decompression surgery 3 months ago. He also has 2 big syrinxs and a chain of smaller ones. Surgery was hard but he is doing really good now. Anyway yesterday we went for follow up mri and then seen the dr. He told us that our son looks great the syrinxs have gotten smaller and no more follow up is needed. I am having a really hard time believing that is true? He said he doesnt need any restrictions he can do anything and everything....even wrestling?? I follow along with this forum alot how come all of u aren't better with one surgery? All of this has been so scary......I just have a really hard time believing he is "normal" and healthy now. Maybe im just a scared mom?

[Elisaandbucky]

Hi. I am following your thread and noting how you feel protective of your little boy. My mothering instincts would also be at work at all his time. Your son is young and, I imagine, anxious to be out there playing again - especially with the season changing. I would really try to keep a close eye on his activities so he will not get too over strained - despite what any doctor says. Only you know your son's day to day activity level. Echoing what has been expressed above, I recommend that you trust yourself and your dedication and love for him.

[selmaS]

Hi...send me a PM (private message) about the Dr as we do not want to offend anyone.....

I can  only tell you about my experience and I had my last followup at 1 yr post op....even then when I had issues I had my PCP to help me....not sure why the Dr you went to is ready to stop following your son....

As I said b4 listen to your instincts....

[samsam5mom]

Can I post who the dr is? He said he is a chiari specialist. And told us he just wrote a paper on children and contact sports. He told us that if we want we can bring our son back in 5 YEARS and do another mri but it is for their research not my son!! He seems so sure of himself but like u said my son obviously has good days but still alot of bad days and we still use alot of tylonal to help.

[duff9]

Just had to comment. As the parent of a 9yr old who had surgery last July I would not be happy without some more follow up. My son also has syrinxs just as you discribed. He had his followup MRI at 6mths postop. Like your son the syrinx have shrunk but he still has good days and bad days. They noticed on his Mri enlarged ventricles. Due back with NS at end of the month for another follow up. At 3mths post op its much too soon. Trust your instincts. Mum knows best. BTW he's not allowed contact sports diveing roller coasters bouncy castles etc.

[selmaS]

  I have to agree with you to have concerns and doubts......3 months post op to declare no restrictions OR follow ups is troubling as I know many of us begin to have a return of symptoms around the 3 month post op period....it is only the nerves healing....but it is possible...plus, we continue to heal for up to 2 yrs on the inside....just bcuz the incision is healed does not mean we are done healing.....or that set backs can not develop if they haven't already.

I would not allow full contact sports at this point....and not knowing who your Dr was or if it was a true Chiari specialist.

Many if us may continue to have issues if one of the following occurred.....1- related conditions were not ruled out or precautions taken for them 2-have related conditions that continue to cause symptoms similar to Chiari 3-much older.....the longer compression of the nerves takes place can cause  perm nerve damage 4- not using a true Chiari specialist.

Chiari is a malformation of the skull , surgery does not correct it or rid us of it, it only restores CSF flow..we will always have Chiari and can have symptoms return for short periods of time....just as b4 surgery Chiari symptoms cycle and post op the cycle of not having any symptoms can last longer appearing for all to be gone....only to come back later....


Some that have had surgery have claimed to go up to 10 yrs b4 some symptoms returned....

My surgery will be 6 yrs ago this May....and I do have other related conditions that cause similar symptoms....so, I know I will always have something to deal with....

My suggestion to you is keep a journal of how your son is doing now and continue to keep it going forward keeping track of his activities.....and note when he has bad days what he did the previous day or two....

Listen to your mom radar, gut what ever you call it...we are all different as to how much time we need to heal....with my related condition I take longer to heal....only you will know what your son needs..