Chiari Malformation

[Cavisd]

I have a 16 year old daughter who was involved in 3 head injurys within 3 weeks during basketball game. After the 3rd and worse knock to the head we were seen  by a wonderful doctor at a local college sports injury clinic. An ImPACT test was done and she was told she had a few concussions. She has major headaches and has problems with concentration & confusion.  Lights, sound & smells effect  her.  Some of her Impact test scores are improving, but others are not. Ater 5 weeks now  we have taken her to see a Neuropsychiatry doctor who said she has post concussion  syndrom.  Test included MRI Brian W and WO Gad. This was when they told us she has a Type 1 Chiari Malformation and that is was nothing that should worry us. We called the doctor who we saw a the sports med. clinic and he sent the MRI to a Neurosurgeon he spoke highly of from another hospital 3 hours away from our area. This doctor just returned from vacation and has informed us we need to see him this Saturday because our daughter needs surgery.  Still kind of concerned that this comment was made even before he has seen my daughter. Have lots of questions. She had no symptoms before the concussion. She is a  very  healthy and active teen age girl. Now I'm looking everywhere for info. and even more scared.   HELP!!!!
What should we do? Where should we go?

[selmaS]

  Be advised u may not find a Dr close to u and u may have to travel....that said, u may find a Dr willing to do the surgery, but they may not have the experience with it...so, that is not what or whom u want.It is worth traveling, then dealing with a Dr that really is not a true specialist.

  U also want a Dr u r comfortable with, personally as well as professionally....so u do have to see a few....to compare.

    Take ur time if u can to make this choice.

            "selma"

[Cavisd]

Thanks for the prayers, we believe this accident was a blessing. Now we know before she has to fo thur any more problems with this condition.  The doctor has shown us the MRI and she has a 20mm drop, which you can see clearly on the MRI. Yes, we have alot of questions. Just want to find the best Doctor to see for a 2nd opinion,  We live in the Michigan so I will check the lists on this page for some doctors in this State or in Wisconsin which is close to us also. Any ideas?

[Cavisd]

Thanks for your reply. He has shown us the MRI and she has a 20mm drop, which you can see clearly on the MRI. Yes, we have alot of questions. Just want to find the best Doctor to see for a 2nd opinion,  We live in the Michigan so I will check the lists on this page for some doctors in this State or in Wisconsin which is close to us also. Any ideas?

[Cavisd]

Thanks for your reply. Yes, we have alot of questions. Just want to find the best Doctor to see for a 2nd opinion,  We live in the Michigan so I will check the lists on this page for some doctors in this State or in Wisconsin which is close to us also.

[linnielou232]

You and your family is in our heart's and prayer's.  It's hard to find this out by a phone call.  As for me I never knew what Chairi was until I heard the word's in my own record's.  I also suggest start a list of question's that you want to have answered before going to see the NS  this way you won't forget anything that is important to you because once into the visit we all tend to forget.  It's a lot to absorb.  I hope the best for you and your DD visit.  I also suggest more than 1 oppion.  I acctrually had 3 before deciding on surgery.  This accident happened for a reason and hopefully you can look at this as a good  thing. If this didn't happen to your DD she probably would be suffering a lot more.  This forum is a blessing and a lot of informative supportive love for each other who we all understand each other.  Just to let you know your not alone in this.  Wish you the best with your visit.  Let us know.

[selmaS]

  Hi and welcome to the Chiari forum.

It is very possible to have chiari and not be aware of it until u have a fall, trauma  or get bounced around...even a hard cough or sneeze could  trigger symptoms to start or worsen. With a condition u have since birth, u get accustomed to the symptoms and consider them "normal" and how would u know ne different? Many with chiari adapt and learn to adjust to avoid having symptoms again, which they have no idea r symptoms of nething, just how one feels doing this or that. So yes, they can appear healthy and with no real health issues until something triggers the symptoms to increase and they can not be ignored, Chiari symptoms also cycle, so it makes it diff to take notice that it is not normal.

I would suggest u get a few opinions, but it is possible to see from a MRI if there is an obstruction or other issue  that may need surgery if they r use to dealing with this condition...and not all NS's r .

We do have a list of Drs in the Health Pages for u to use to research Drs, not all r true chiari specialists, but have successfully treated a member here.
The list is not a referral, so do research all drs to find the right one for u.

Scroll to the bottom of this page to locate the link to the Health Pages.

     "selma"

[jiggle93]

Welcome to our community. I am so sorry that you and your are going through this, but you have found the right place for support and information.  I would tell you what I have heard on this forum many times before, which is to get seen-but then get a second or even third opinion.  Also to make sure that the NS you do see is a chiari specialist!  I am assumeing tht this dx has come from the recent injuries, but have them check for any other related issues. I am sure you have many questions, if you can take some time to look around here, you will find many answers to the questons that you have as well as very helpful advice.