my son's diagnosis

[bear4467]

My 14 year old son was just diagnosed with Chiari.  I don't know very much about it but have begun researching.  I am absolutely terrified and I want to be as supportive as I can for my son.  We will be seeing a neurosurgeon soon and there has been talk of surgery.  What does this surgery entail?  How long for recovery?  Will the symptoms go away?  Anything you offer will be appreciated.  Right now fear is running rampant.

[D4L]

Hello,
So sorry to hear about your son. My son was diagnosed with Chiari 1.5 and syringomyelia or syrinx, the fluid pockets you refered to.

While every person has a different story I wanted to share just a bit of ours. Jeff has undergone 3 decompression surgeries so far. His case is kinda complicated although he has never had a lot of symptoms and certainly not as serious as some cases are. We are awaiting MRIs in June to see the next step, probably fusing his skull to his top vertebrae.

Yesterday Jeff ran in his Regional track meet. It is 8 weeks after his last surgery. Granted he was SLOW but it was the first time he got the go-ahead to really run and not just jog. He had remained with his team as a manager.With his previous surgery he competed in cross country 6 months after surgery and even medal-ed. At the meet yesterday as he ran I got all choked up. As a Mom I worry about all the things that can go wrong, things he never talks about. But life is good.

I'm not braggin' about how fast or tough my boy is. I just want you to know that life can be great even with a crappy diagnosis.He is not fixed YET, but he is happy. There are things he gave up but so much more he can do. Jeff has a "git er done" attitude.

These message boards are great for getting a handle on all the new terms and issues. It is like you have to learn a whole new language. Your homework here will make it easier to make good choices after asking the professionals good questions.

My son went to UW Madison for his surgery with Dr Iskandar. The Chiari institute would be a great place to go to with amazing professionals with lots of experience and resources.

All the best to you~ hang in there!

[sherimom]

That is exactly what happened to my son! He was wrestling and started having these symptoms - I had been told when he was 8 or 9 intially, but they made it seem like it was nothing. I had actually forgotten about it because it wasn't a big deal.

Looking back now, he did have symptoms prior but we didn't know until his symptoms grew worse, the headaches, back pain, tingling and numbness, forgetting words.....

I keep track of pretty much everything so we can explain to doctors how often, how bad, etc....

Feel free to pm me too if you'd like.

[aielcaracarn]

This is not a referral just a suggested starting point for your research, but you could look into Dr. Bolognese at the Chiari Institute in Long Island. Also, search youtube for "Chiari Malformation on Mystery Diagnosis" this will lead you to a video about one mother's journey with a daughter that has Chiari. Dr Bolognese is featured in this story. The video is quite lengthy,over 20 minutes, but well worth the time I think.

[bear4467]

Thank you for your response.  I am truly scared to death.  We discovered the Chiari because my son started wrestling this year for his school team.  A few weeks into it he started having horrific headaches coupled with numbness in his hands and slurred speech.  I immediately took our primary and she sent him to a neurologist.  They did an MRI of the head and that is how it was discovered.  His herniation is 8mm bilaterally whatever that means.  We are going for a spinal MRI to check for the "pockets" of spinal fluid.  We live in NY so I am thinking of using a neurosurgeon at Columbia Presbyterian hospital in the city.  At this point I don't know if we are facing surgery but I want to be prepared with as much information as possible.  Thank you for your support.

[sherimom]

Hi and Welcome
You're in a good place here!
My son had decompression surgery at age 15, almost 16, he is now 18.  Feel free to ready my profile or journal stuff about this.
We are back now because he's having some issues again and he may need another surgery, we don't know yet.

First, take a deep breath.  I remember the tears and gut wrenching fear when my son was diagnosed.....it is an awful feeling. There is SO much more information on Chiari now than even two years ago - there is tons of support in this forum too - they were my lifeline to sanity when we went through this.

Second, if you get a minute (someone else suggested this too) let us know what led to your son's being diagnosed, how large the herniation is (how far does it extend into the spinal canal? It's usually talked about in terms of mm - my son's was 17 mm) Share your story as you have time.

For me, the easiest thing was to do a search on this site about the surgery, called several names - posterior fossa decompression, chiari decompression, and others I'm sure. There are websites that explain in more detail, I believe conquerchiari, chiariconnectioninternational, or chiarione, websites have diagrams and detailed explanations.

Please feel free to send private message to me if you'd like.

Is your son active in sports or other activities? How is he handling all of this?  Hope we'll hear from you soon!
Sherimom

[linnielou232]

Wanted to welcome you,and also so sorry to hear your dear son found out he has Chairi.  You have come to the right place for answers and for support.  We are here to help you in any way that we can.  Best of luck.
Linda :)

[selmaS]

  Hi and welcome to the Chiari forum.

U have many questions, and most of them r diff to answer as we r all different and it depends on how ur son is doing, what symptoms he has now, and what happened to have him tested that lead to finding the chiari.....

Make sure they check him for a syrinx, sleep apnea, ICP, disk issues ,ehlers-danlso, tethered cord,CSF obstruction and overcrwoding, as having these issues can affect how he feels and heals post op,

And make sure the Dr is a true Chiari specialist....see a few Drs and compare, do not rush into surgery.


  Symptoms may not be as bad, or may worsen post op, and there can be a period of a yr or more to recover...the scar heals sooner, then the nerves.....

  Many of us do have our surgery experience posted on our profile page.Please feel free to read them.