My daughter

[mandy0312]

my daughter was resently diagnosed with chiari #1...i am a basket case over it..her neurosurgeon has scheduled a surgery and i know it will help, but am still scared..Kristina is a very beautiful healthy 10 year old, she has develpoed some problems a couple of months ago and an MRi was scheduled..we were told the nexxt day it was chiari, does anyone on here have a child that recently had the surgery

[thieb9]

Glad to hear they are doing an mri. Loss of sensation to hot and cold is a symptom of a syrinx. I know being a parent how scary it is when your child is sick. Hang in there. It sounds like you are doing everything right for her!

[selmaS]

HI...has she had a MRI of her lumbar spine?...it could be tethered cord...or, just that the act of looking down is pinching off supply of blood and CSF causing this sensation.
But do have the TC ruled out.

"selma"

[mandy0312]

Thank you for the info...I took Kristina to her new pediatrician yesterday and he gave her lortab for pain and flexeril for her neck stiffness...he is also familiar with Chiari..he did a couple neuro tests in his office(had her follow his finger with her eyes, sensation to touch,facial muscles,etc) he said she will do wonderful after surgery,and also found out a lil more info on Dr.Gump....people come from around the eastern side of the country to see this dr.he is one of only two pediatric NS....so i feel better about him..He will not however give you any medicine until after surgery(bleeding rissks can inccrease) but her pediatrician said the lortab can be taken up to 2 days before surgery...but that I should call the NS and verify what his request is.I just hate seeing my baby in pain...and to add to her symptoms,she said when she looks down her spine tingles...has anyone else complained or experienced this?

[ramgirl77]

I know that you trust the doctors that are seeing your daughter, but I urge you to go to the Chiari institute website and Dr. Bolognese (I have not personally seen him) has made a series of VERY helpful informational videos. I am new to this and have not been fully diagnosed yet. But I think you will see why it is so very important for you to see someone who has dealt with all of the complications that can arise with this condition. This is the short cut to the videos, make sure you click on patient informaion in the lower right side of the screen, it will bring up more videos. http://www.chiariinstitute.com/Videos/index.html
And please know that in no way am I suggesting you go to the Chiari Institute but the info he gives is priceless. Good luck in your journey!

[mandy0312]

Kristina woke up today and even after a hot shower, her neck is so sore she can not look up or down:(

[mandy0312]

Thank you, I am doing my best with them...i believe n discipline, family dinner at the table everynight, and the kids have chores,they know what is expected from them

[n40066]

you are an amazing mother and your little angel is very, very blessed to have you!!!

[selmaS]

It sounds like u r doing all u can ...she is lucky to have a mom that is actively advocating for her.....it is soooo very important to educate ur self on health matters and at her age she can not.

Gather up all the movies and music she loves  to help during the post op recovery process...keep visitations  until she is better....I felt it a distraction...and she will feel the need to visit instead of rest.

U r doing a great job!!

"selma"

[mandy0312]

i am trying to make her take it easy,but she is a very active kid...i do notice sometimes after activities she complains of her head hurting,but she wakes up daily with them..she loves the bath and body works, lavender bubble bath, its relaxing to her...and at night I put a lil baby oil on my hands and massage her neck,shoulders and lower head, she likes that the most,she has knots in her muscles around that area....so i pay extra attention to it......i just dont want her in pain

[selmaS]

Hi...well until surgery, all u can do is have her rest and try warm soaks in the tub...aroma therapy may help...massage.....

Post op, she will have to be on some stronger meds for a short period of time....but will be the right dosage for someone her age.

"selma"

[mandy0312]

what can they give a 10 year old after surgery for her pain?...i dont want her on real strong medicine...but i dont want her in pain either

[mandy0312]

i am very hopeful that her restricted CSF is what is causing her to worsten, and right now ibuprophen is the only thing she can take for her headaches,that work somewhat...but she has to stop them 10 days before her surgery,what is she goinf to do then?

[selmaS]

sending prayers the MRI reveals what u expect and nothing more......

Please keep us posted

"selma"

[mandy0312]

i talked to the doctors office today, he has ordered an MRI for her spine, they were waiting on insurance info, i actually called them and said i think i want her to have one, there is an MRi scheduled for oct, 22nd....hopefully there is nothing there,but i noticed yesterday she has lost her sensitivity to hot and cold items...im praying that it is the chiari progressing, and nothing further

[n40066]

oh...and mandy?  just one other thing....i've talked to hundreds of people with chiari that have had the surgery.  never once have i encountered myself, nor do i know anyone else who has, a dr. that did not insist on an mri of at least the cervical spine prior to surgery.  i'm not trying to come off like a know it all, because i'm far from the most knowledgable person on this forum or anywhere else for that matter....i'm just sharing with you the facts as i know them to be.  and i'm telling you this because i care.  you do not have to rush into this.  take your time, breath, get your bearings, research, ask questions and then decide.  because once the surgery is done, it cannot be undone.  it is what it will be forever.

[n40066]

i'm very happy that you have a dr that you know and trust, but i cannot stress again the absolute importance of making sure he is a chiari specialist...not just someone who does reasearch and is willing to learn about it.  there is a young girl on here, she goes by "soccero" who was in a very similar situation as yourself.  you might want to talk to her about her experience....if you look under top answers, you will see her.  click on her name and send her a message.  she's a great kid and i know she'll be more than willing to share her story with you.  as parents, we always want only the very best for our children.  please do not let fear rush you into making a rash decision that you may regret later.  we have all been where you now are, mandy....be it with ourselves, a child, a spouse, sibling or loved one.  we know and understand as no one else ever can.  i will add you and your daughter to my prayers.

elizabeth

[selmaS]

Hi and welcome....so sorry ur little girl is having to deal with this as u do...as a parent myself I can only imagine what I would be like if this was my DD.

So far mine does not have this, and I must agree with Lizzy, make sure u do research on the dr.....too many times chiarians feel the drs reputation is the same thing as being good at everything neuro...which is furthest from the truth.

U deff want a dr that has his focus on chiari and chiari related conditions....u  want one that has experience with this just in case there r ne surprises....one that knows what to tell u to expect...one that will tell u that the surgery is not a cure, only a means to slow progression.

Also, if ur DD is not having life altering effects of this....and she is not at risk for perm nerve damage...hold off for a time.....be sure the benefits out weight the risks.

Sending prayers to u and ur DD that u have found the right drs for her.

"selma"

[rod44]

I cant add much to what Elizabeth posted, I  wish you and your DD the best. I hope surgery works and Kristina is back to full health soon :)

Ray

[mandy0312]

thank you, i need support in order to stay strong for her

[dkdean]

Mandy--Just wanted you to know I am sending positive thoughts your way.  This board is wonderful and you will get lots of support.  

[mandy0312]

we are luckily enough to live close to norton kosairs hospital, in louisville ky. i have googled the dr, and read up on everything..my mom is friends with a Dr. banerjee..he is kys top neurosurgeon and trains the new guys here.he will be keeping an eye on her progress.after some neurological tests in Dr.Gumps(our NS) he ruled out the need for the full spine MRi.this whole ordeal started about a year ago,but it was just headaches, and with migraines effecting every woman in my family i thought she was blessed with them too.about 3 months ago she started complaining of her eyes twitching and blurred vision, headaches, and a cold feeling in her throat even when she ate hot foods.i called her eye doctor(an MD) and made an appt. i thought maybe her glasses were too strong for her and dismissed the cold throat,i have never heard of that before.her MD ordered an MRI on monday the 20th of september.tuesday morning the eye dr herself called me and said the radiologists that read the MRI had diagnosed her with Chiari malformation 1..she was unsure exactly what it was.but had set up an emergency appt with the neurosurgeon, before she called me.the appt was friday the 24th.after about an hour and a half in the room with the NS he said he is going to suggest surgery right away.she was scheduled for nov.2nd.......his biggest concern was she had lost her gag reflex and would eventually have difficulties swallowing and breathing on her own.he does not feel that her dura needs to be opened at this time and the regular chiari decompression will suit her just fine.her herniation is 6mm.but over this past summer she has grown a foot in height.shes 10 and measures in at 5'1"...that could have caused her progrems to develop...i am just so thankful we found it early and she is not having to go for years misdiagnosed.Kosair hospital is a state of the art hospital,and her NS is going to seminars about Chiari, and keeps up on all the break through technology for this.but she is my baby!(actually middle child) and i had to get on antidepressants to stay strong for her.i can call the NS office and the pediatric team is always very willing to answer any ? i think about after the last call.thank you, i know if i talk about it, it will help me! but nobody (family and friend wise0 knows anything about it
Mandy

[n40066]

take a deeep breath, mom, and sloooow down!!!  first, let me say how very sorry i am to hear that your daughter has chiari.  it's a terrible thing to have to watch your child suffer with anything in life, but chiari can be cruel.  she's lucky she has a mom like you who is doing the right thing by her!  you're getting out there and doing research!  first things first.  if you daughters dr is NOT a noted chiari specialist, i would suggest you rethink allowing him/her to do the surgery.  many members here and on other sites have done that, gone with the dr the gave them the dx and have had major problems ever since!!!  THE MOST IMPORTANT THING YOU CAN DO FOR YOUR DAUGHTERS HEALTH IS RESEARCHING HER DR BEFORE ALLOWING THE SURGERY TO BE DONE!!!!  on this forum you will find a link for the drs people here have used and their results/reactions to them.  google the drs...google chiari...get all the information you can!  are your daughters symptoms really severe?  what symptoms does she have?  has she had a full spinal mri?  been tested for tethered cord or eds or a csf blockage? does she have a syrinx?  all these things are very important to know prior to having surgery.  i have chiari myself and am well out of childhood, but there are several parents and there are many teenage members here as well that i am sure will reach out to you.  

i'm sorry to blast you with all these questions, but they are very important.  you get only one FIRST chance to help your darling daughter.  be armed with the best ammunition you can. knowledge!  everyone here will help you all they can and the support you will find here can really help you get thru the toughest of days.  i'm so very sorry you and your family are going through this but very glad you found your way here.  welcome to our family!
elizabeth