Chiari 1 diagnosis for my 8 year old daughter

[turk911]

Hello!  My daughter has suffered from headaches since last year.  This year she was put on migrane meds that didn't help. She just had an MRI done that revealed a sinus infection, Chiari 1 size 7 mm and mild assymetry of lateral ventricles with right mildly prominent.  We have an appointment with a neurosurgeon in few weeks.  Her ped said kids are not usually symptomatic and they didn't know if her headaches were from the sinus infection or chiari.  She took 2 rounds of antibiotics and about 50% of her headaches have cleared up.  However, when she goes to bed at night she gets headaches, dizzy and sometimes a neck ache. She is able to fall alseep, but it takes a while.  She has complained  neck pain off and on and I thought it was her pillow and how she slept. As a mom these symptoms seemed so vague, but now they gain more significance.  Today she has a terrible headache on the right side of her head.  I have looked at her back and think she may be slightly curved.  Would anything else show up on an MRI and would she be more symptomatic if she had more than chiari? I am getting worried.  What can I expect at the neurosurgeon.  How symptomatic are children before they choose surgery?  I need to prepare myself.  Another curious issue is her academic performance.  I self diagnosed her last year as dyselxic and took measures to get her help at school for reading trouble.  As a young girl she did not learn her letters, her address or phone number and such. She always struggled with memory.  Even still, she cannot spell correctly, writes letters backwards.  All the telltale dyslexia signals.  Can this be related?  I am really struggling with this and need some info before the neuro.  If you can help, please feel free!

[selmaS]

Shannon u did the right thing and should not feel silly....u r a great advocate for ur DD.
U never know what is going on, but continue to trust ur mommy radar......

Hopefully ur NS visit will go better and mayb their testing will answer some of ur concerns.

"selma"

[turk911]

ok, I feel a little better, but totally stupid!  Took dd to the ped today and she looked her over really well, but didn't confirm or deny scoliosis.  She did measure her legs and one is slightly, 1cm, off from the other, but nothing else notable.  I told her I think her shoulders are uneven and I see a curve in her spine, but the ped doesn't think so.  Which is great for my dd, I hope she is right. Didn't have any xray done, she is going to leave it to the NS who will more than likely order more tests.  I am releived, but foolish feeling.  I had my husband look at her too and he saw it too! I just cannot beleive 1cm in a leg would make her look so off center.  When I look at her, her head is not in the middle.  My husband thinks I am reding too much into it, I guess I am, but I swear I think she is off somehow.  The ped did say she was not symmetrical, but I don't know what to make of that.  I was afraid I would be the mom who ran around yelling fire for no fire and I feel silly!  I just had to share what this has made me.  I guess I am going crazy.  I hope I don't self implode under pressure before the NS appointments.  Or go stark raving mad.  
Mikey's mom, I will keep your expereince in mind.  Ihave to say I was looking forward to that appt. to get some good insight. . . I thought one of their NS was a chiari spec. maybe she simply treats it . . . will have to look I guess.  Thank you so much for your input, thoughts, and prayers. I will do the same for you surely!   I will be interested in hearing about your appointment.  My mommy radar is working overtime I am afraid!  Thanks again and keep me posted, ok?
Shannon

[mikeysmom1995]

Hi Shannon,
My son was dx'd with chiari just in the last few months. I say it like this as it took 2 different neurosurgeons for us to get the proper dx.  I too live in Michigan, and we started out at Childrens Hosp in Detroit which is where the doc said that my son's herniation was not big enough to be a chiari.  While his symptoms seem to flare like a roller coaster, up and down, he still has them. After going through the U of M neurosurgeons with our other son who has tethered cord, and not having a very good experience, we decided to go out of state to have our Chiari son treated. We contacted Dr. David Frim in Chicago at Comer Childrens Hospital, and asked if he would review our son's MRI scans and he agreed. After his review he confirmed that our son did in fact have Chiari and he agreed to see him. He ordered a full spine MRI to rule out syrinx, and we go see him in April.  Dr. Frim is a true Chiari specialist which is why we are going the distance to see him. Our boy has been having symptoms for quite some time and after an MRI for what appeared to be a small tumor on a cat scan which we thought was causing all of his symptoms came back okay for the tumor, I noticed there was a second diagnosis on the MRI report, so I pursued it with my family doc. The family doc did not notice the second dx, and did not think that Chiari could be causing all of his symptoms, but after finding this site and all of the wonderful people here, I knew that I was not crazy ( well maybe a little) as many here suffer from the same as my son. I have gotten such strength from all here and such direction on what to ask the doctors, which helped in getting  his dx.
Hang in  there and listen to your Mommy radar, mine has not steered me wrong yet.
I will pray for your little one, and your family.
Barb :)

[turk911]

Hi guy, I just typed out this long message and lost it all! dumb computer.  Thanks so much for eveything! I have checked out the inst. and if the time comes will certainly entertain it further.  right now, I am impatiently waiting some information about her case. today i am going to get some xrays of her back.  need to see this curve and how severe it is.  Is it related to chiari?  I have no idea.  not knowing is so bad, maybe even worse than treatment options.  plus, we haven't told her anything yet because we don't know what the docs will say.  she is alredy nervous b/c i told her she has a curved spine.  now its all about a brace and such.  imagine what happens when i explain the other half? well, i am waiting  a bit longer on that front.  I don't want her to worry esp. if there is no reason and the chiari will be treated with a med and  wait and see attitude.  I mean, that is possible I guess. . . i am skeptical, but just the mom! i am looking for answers, but will have to wait.  and be the actress like miaquam. Miaquam, i hope all goes well for you!  keep me updated and thanks for the exc. info.  It encouraged me to ask the tough questions and elusive ones... i wrote them down for the NS!  I only get them for a few precious minutes so I have to be ready and you gave me some great insight!  chat soon!

[MiaQuam]

I have been reading your posts and I feel deeply for your situation.  I have Chiari and Scoliosis and am having surgery on 04/15/10.  I can't imagine my children going through this.  I only want to stress to you the doctor or surgeon that you choose.  There is a place right outside of NYC called the Chiari Institue.  It is in a town called Great Neck, NY.  The website is chiariinstitute.com.  I can't express how important it is to have a doctor that only does this surgery.  I have research so many facts and statistics and every bit of info points to a "Chiari Specialist".  Not one who just knows about it and can perform the surgery.  The number of complications after the surgery are greatly reduced when going to a 'Chiari Specialists".  This is all documented as well.  I have a doctor in my area of VA who does it but I still chose the one in NY.  It took awhile to get an appt. but it was well worth it.  If you can have a doctor recommend you their, I'm sure you can get it quicker.  If you read the books available on Chiari, everyone of them credits the doctors at The Chiari Institute for their input.  I was notified about a lawsuit regarding one of the physcians but it was about a sceduling mishap, not malpractice.  Everyone will have their opinion but make sure you check these doctors out before deciding.  The had me report to a diagnostic center the morning before my appt to have a series of mri's and ct scans and x-rays.   They did not want any prior mri info.  It took almost 3 hours and then that afternoon, I met my neurologist at the institute.  During the appt there, the surgeons reviewed my tests to decide if I was a candidate for the surgery.  Unfortunately, I was.   They then called the NS in to see me and discuss everything with me.  He was wonderful and realistic.  I told him that I would take the wait and see approach and he said to stay intouch monthly with him via email to let him know how I'm doing.  A couple months later he emailed me and said that the entire board from the Institute met and agreed that they could help me with an 87% chance of complete success.  Their board is made up from doctors from every corner of the world.  I have heard on this site that if a doctor tells you that they can fix everything with a 100% outcome, walk out of their office and find a new one.  I'm sorry if my words are messed up, it's a chiari thing ;) I have 2 boys, 7&10, and they don't know about Mommy's illness. Mommy's are great acctresses. The only thing they know is that my brain is bigger than Daddy's.  My 7 year old said that explains why Mommy is Smarter than Daddy!  Good luck and God Bless you and your family!  Always, Always trust your mommy instinct!!

[*Stormy*]

Shannon..I just wanted you to know...if this was one of my children after learning what I have now about DR's...I would ring the alarm bells too. I wouldn't even worry about unringing them later :)
That is the ONLY way that anyone really sits up and takes notice!! Please don't worry about being pushy...I felt that way too and I kick myself everyday for just not going in there and getting what I wanted. Listening to other peoples stories in this forum really gave me the strength to go back to my doctor and settle things... and it looks like it may have paid off!!

Carolyn

[turk911]

Aaahh Carolyn. so glad to hear this, its superficial, but she refuses to cut her hair.  I have given up and quit fighting it out with her.  I choose my battles now and hair isn't one of them.  Nice to know, just in case we get to the surgical aspect.  I understand wanting to help others understand this issue.  I have to say, her ped. probably looked it up in a book before she called me.  I looked all over for answers, but all I really want is this.  THIS is great! The docs can give me answers, but this is a great place in the interim.  It helps to know what others have gone through.

Crital40, I intend to do just that.  The NS in Michigan specializes in this, but if it (surgery) comes to fruition, I will be asking the surgical stuff.  I have read similar stories time and time again!  Thank you for sharing with me.  I appreciate all the input, I am just beginning my journey and am totally green and worry about being pushy.  Well, not really, but I hate to seem like a freaking alarmist!  That is how I feel, but like I told the ped, this is my child and I need to make her decisions, so if I raise alarm bells unnecessarily I will unring them later.  I am so sad for all you and your daughter have had to go through and I  hope your daughter is able to receive the help she needs, the best to you and your family too!

Thanks again to this community of people who share their information with people like me who need answers, help and support finding their way through this scary stuff.

shannon

[Crital40]

My Daughter is turning 8 on Monday, she was diagnosed with Chiari 1 Malformation when she was 5. We learned first that she had scoliosis and later through MRI found out she had the Chiari malformation. She had surgery at Duke in North Carolina. I definately think you should have a pediatric neurosurgeon, and when you see them ask how often they treat chiari malformation. The decompression surgery is called routine but by the time we were finished my daughter had four surgeries in thirty-one days. I don't believe in routine. As every patient is different, arm yourself with as much information as possible in advance.My daughter is currently seeing doctors at Shriners Hospital for her scoliosis. I wish you the best!

[*Stormy*]

I really glad to hear that this has helped you...I think that's it what all of us want most..is to be able to help someone else through what we have already been through. Plus, I am hoping to give back what the others here in the forum have given me.

Honestly, I am not sure if the scoliosis can cause Chiari or the other way around or if they just seem to occur along side each other. I don't have it but I hear about the connection all the time. I would think the decision on whether they will want to do surgery will be based on the extent of the CSF blockage and her symptoms. I'm not sure if it is the same with kids but my NS pulled all my hair forward and only shaved  about 4 inches up from my neckline, so when my hair is down..no one can even tell!! I've got a few odd looks when I say I had brain surgery 2 months ago and I can tell they are wondering where the scar is!

Please do keep up posted and I am hoping for the best for you and your DD :)
Carolyn

[turk911]

OMG, thank you so much for all of your comments.  Seriously, I am so grateful to you all, I have tears in my eyes as I type this out. . . I have felt like I am a crazy mom, going off the deep end, combing the internet with every word combo I can invent to gather info.  We have only known about this for 3 weeks now, but like I said all these little things are adding up now.  Her headaches and dizziness when she goes to bed, poor thing!  Now I am so glad I insisted that I get an appt with a pediatric NS who specialized in this.    My Ped didn't think it was necessary, I think she does not understand this Chiari though, after my research I told her I don't want to wait around until I see the local NS b/c I will not stop there regardless of the outcome.  I also called today to make an appt with the ped. on Monday b/c I know my daughter has scoliosis too.  She is a swimmer and I noticed something funny, but wasn't sure what, then I read about Chiari and I looked at her 3 times and measured her shoulders and hips, she is crooked!  So, I want to have that x-ray before either of these appointments come up, especially the one at Univ of Michigan with the pediatric NS.  From what I have read, Chiari and Scholiosis are usually treated with surgery. . . is that true? . . I may be putting my cart in front of the horse, but my daughter seriously has hair like Rapuzle. . .long, blonde and beautiful.  I was a little worried about surgery with the Chairi 1, but held out hope they would watch her for a while and see what happens, but with the spine curve, I don't think that will happen. . . do NS watch Chairi and Scoliosis in a 9 yr old girl (oops just turned 9 last week, i forgot!)  Oh, i feel sick to my stomach!!  I am so grateful to all of you guys, I feel sick, but validated.  Not quite so crazy. . . thank you so much for your help.

Carol, I will discuss the CINE mri with the NS for sure. I am very curious about this b/c I think it needs to be adresses, Selma menioned this too.  Thanks so much for your input, I am so grateful to the help of strangers.

Olsonkids4, you must be very nervous too!  WOw, that was fast, I haven't even seen a NS yet and look at you!  You must be in very capable hands, what a blessing!  I hope all goes well for you and your son.

Shannon, we share the same name! how cool is that?  unusual for sure. plus I have 3 girls so I am also mom to 3!!lol  Thanks too for your input.  I am so thankful!

I will keep in touch on here and keep you all posted.  Thanks again!

[shanmomof3]

Hi and welcome to the group! I'm so sorry your DS and you are going through this! I agree with everyone else. The best thing you can do is research for yourself and then you know more what to expect from the drs and in some cases that they (the drs) are wrong. I find it odd that your dr said children dont have symptoms because i know several people who have been told only children have symptoms and not adults. BOTH statements are WRONG! It was explained to me that chiari becomes symptomatic at different stages in life, in different people. Just know we are all here for support and any info we may have. Blessings ~ Shannon

[*Stormy*]

I just wanted to say that I agree with the others. A lot of us adults or children constantly hear that Chiari is usually asymptomatic (I was told that even when I could barely walk!) and 90% of the time the doctors are wrong!!!

It looks like you are going in the right direction already so the biggest thing is to stay fast to your convictions that there is something wrong and don't give in. Make sure you know about the CINE MRI and make sure to ask for one if they aren't going to do it. Not all of us get the opportunity to have one, or there isn't one available. It would be the BEST tool to prove that Chiari is causing the symptoms as it tracks the CSF flow around the brain and spinal cord and will show any blockages. No one can dispute that is the problem once they see a blockage. On the other hand, my NS knew by my pics that it was causing the problem and once you actually get to see a NS, they may know right away too. This type of thing is better dealt with a NS over a NL.

I hope that you get all the answers you need...I am so sorry you are going through this with your daughter...I have 3 boys..
Take care and my thoughts are with you!
Carolyn

[olsonkids4]

I too am a mother of a child with chiari, but we have only known for about 3 wks.  So I can not give alot advise as I am still learning too.  But I wanted to tell you my experience, my 5 yr old son also has alot of the same symptoms as your daughter.  He has a 7mm herniation and will have surgery on the 19th of this month.  I was not prepared for such a quick surgery date, just saw the ped neru on the 3rd.  All I can say is trust your gut, moms do know best.

[selmaS]

I always knew something was wrong even when I was a child...I can remember times when I was 10.....I am sure, there were things even younger but with chiari and my age, I can not pin point a time beyond that age, but I am sure since I knew at 10 or should I say I felt at 10 that the head pains with straining were normal for me  or so I assumed ...I always hated that pain.

There is so much misconception and misinformation about this....most kids will not complain about some of the issues if they always had them and perceive them as normal, so if it goes unreported they feel there r no symptoms.....

I know I must be repeating  myself, but I truly believe children have symptoms, they r just unreported.

"selma"

[turk911]

Hey, thanks for the speedy reply. I have two appointments set up, one locally with a neurosurgeon, however, I also have one at U of M with a peditric neurosurgeon who specializes in chiari among others.  I insisted with my ped. that I needed a pediatric opinion and not just a radom neurosurgeon. She really did't seem very concerned about this at all, but she stated several times children are not ususally symptomatic.  I assured her my daughter is.  In any event, I would never trust this to a general ns, but it will be a decent place to begin.  I will have all necessary tests and such done at U of M. I figured there would be more testing, but was not sure what all to expect.  Thank you you have given me some great suggestions.  

[selmaS]

Hi and welcome to the Chiari forum.

I am so sorry ur little one is going thru this and u as a mom r going thru it as well.

Everyone is different as to when they will have symptoms and if they have other related issues/conditions going on too.

Cognitive issues can be chiari related......we tend to have what we call brain fog.....recall issues.....and I tend to misfire my fingers when it come to typing and spelling at times too.

Make sure the surgeon is a chiari specialist, do research.....they should check her complete spine to rule out syrinx, tethered cord, DDD, stinosis, EDS......

A CiNE MRI r usually done as well to look for blocked CSF....and u also want to know if she has overcrowding....this along with quality of life r looked at to decide if ur DD is a surgical candidate.


Since I do not have a child with this, u may be best advised from one that has/is going thru this with a child. Not sure where u live and where u r willing to go, but there r ped chiari specialists out there.

I am glad u found us here, sorry the reason u had to seek us out.

"selma"