Help please!

It’s been a while since i’ve been here. I have been focusing on my daughter. She is 11 yeard old andhas suffered from headaches. For about 3 to 4 years now. I finally got her doctor to order an MRI. The diagnosis reads “low lying cerebellar tonsils projecting 4.5 mm below the level of the foramen magnum without meeting the criteria for chairi malformation”… what meets the critiera for chiari? Should I get a second opinion? He said my daughter is just fine and not to worry! He actually told me to “relax”. I just had had 2 surgeries in the last 2 yeas and he’s. Telling me to relax! Her headaches are often and severe. What should I do? Please help me my friends.

hi juda

thats horrible, GET A SECOND OPINION

ive been also told that my chiari is not a problem, but some docs/specialists/surgeons dont understand the condition, or know enough about about, or believe is cant cause problems.

dont give up, keep pushing for the right docs to take note of what is happening,

you understand it better than them,

i agree with christine

joelene

Hi Juda:

Couldn't agree with Joelene and Christine more....2nd opinion...another thing...'meeting the criteria for Chiari' is nonsense...that 5mm rule is long past.....Size does not matter.....Did you get this info from the radiology report, or neurologist,or NS????? My own experience w/NL's were they were uneducated as far as Chiari.

I have an 11 yr old girl as well..who gets H/A...I found a NL..to start with...I was pleased with him....My girls h/a are not severe and may be a pre-menstral type, hormonal issue..he told me to keep ah/a log on her....which i do...her h/a are not the classic Chiari H/A and 1 Ibuprofen takes it away in 15 min...so the doc did not order MRI..If she shows any other sx's I will see NL again and demand an MRI.

The criteria is of course some herniation..again size doesn't matter..that is what my NS told me and he is conservative concerning surgery...he went by my MRI..5mm hern....and my symptoms....he also did a cervical MRI which showed a bad disc..he felt as though it was wise to 'fix what we know is wrong, wait 6 mths and see if your other sx's improved'.

That is exactly what we did...had neck fusion ..which did help neck pain...wait the 6 mths and still hand balance issues, swoohing/fullness in ears, rapid..crazy hear heart that came out of no where..would wake me out of sound sleep..scary. muscle twitches ,ect.....So, after the neck was fuse, waited 6 mths..we went forward with decompression...I feel as though it was a wise choice...

But when it is your kid...all bets are off in my way of thinking......if her h/a's are severe, and an MRI shows Chiari....forget the joker who told you to relax...move on to another doctor....

forgot where you live....

You are a mom and a mom knows their child...I posted 2 weeks ago that my 14 yr old Victoria was whacked hard wth a lacrosse ball...she was spitting up blood...the ball hit her on her side..lower side ...anyway..go to local ER..doc says..get this one.."Are you sure it wasn't Gateraide you were spitting up or red cool-aide"..Victoria is fairly outspoken and said firmly.."I ONLY DRINK WATER DURING GAMES AND PRACTICES..I KNOW THE TASTE OF BLOOD"....good for her..anyway..this fool..who has the nerve to call himself a doctor...orders a basic X -Ray..no blood work..and sends us home ..saying.."you can play tomorrow if you feel up to it"..when We asked about the blood...he was like 'i don't know what that was all about"....not to comforting ..

So we go home...after being home 10 minutes, Victoria comes to me crying.."Something is really wrong..I don't feel right and I am in pain"..Now mind you...before we left the ER the 1st time..I told this 'doctor'...."I am her mom, I know her...she doesn't look right..can you do bloodwork, CT??" "he says.."she is fine..come back if she feels any worse"!!

We go back to the ER..THANK GOD we got another doc who ordered and CT scan and put in an iv for fluids and did blood work....Long story short..(not really short..sorry)...the CT showed Pulmonary Edema....that can be very serious if not treated. So..the new ER doc gave us a name of a great pulmonologist and we saw her the next day....we see her again tomorrow....I guess, the moral of my story is ..you know you kid...a mom just does.....

Juda , please know we are all here for you...let us know what is going on..you and your girl will be in thought and prayer...what is her name?????

Blessings,

Lori

Thank u everyone for ur responses. Second opinion is the plan. And lori, my daughters name is Victoria too! :slight_smile:

I think your plan is the way to go...Does your daughter go by Victoria??? Mine does..

Hope your day is going well..keep us posted on your daughter...is it Victoria who has Chiari??

Blessings,

Lori

Christine,

I was also deficient in Vit D. I'm beginning to think that it may be a symptom of Chiari. I don't know but it seems like there are an awful lot of us that are experiencing this. I took Vit D therapy doses for awhile and now take 2000 iu daily. I am so glad you are here and are willing to share your experience with Chiari to help others. Second opinions are very important especially when we feel that the first doctor doesn't hear what we are saying or is just amused by us! Please continue to join in on our discussions! We need everyone's opinion on some of this stuff:)

Carla
Christine H. said:

Hi! I just joined the site today as I have been recently diagnosed with CM 1. I'm 37 y/o and have been living with this mystery illness my whole life. Over the years I can't even tell you how many different doctors I've gone to for different ailments. Some of them looked and didn't find anything, some thought I was crazy, and some found a condition, treated me and sent me home with a prescription. Just last year, I went to a GP who suggested I seek mental help. One year later, I have a diagnosis of CM. I said all that to say, don't upset yourself, get a second opinion. Believe it or not, there are many parents who have had to fight for testing and correct diagnosis of their children. This doctor may be right, but none of us appreciate being talked down to or patronized when we're experiencing murphy's law with our health.

I got rid of the GP who gave me levothyroxine for a whole year that I didn't need and told me to seek mental help. I now have a great orthopedic surgeon for the carpal tunnel that I got from taking the small dosage of thyroid meds this GP gave me, a great neurosurgeon, and a great endocronologist who took me off the meds that were killing me.

Please make sure you check your vitamin levels. I had a severe vitamin D deficiency which is killer for the bones. I am coming around slowly, but still suffer with multiple symptoms daily. Everytime I read the different symptoms online somewhere, I've had just about all of them over the course of my life. Don't waste your time with doctors who make fun, raise an eyebrow in a negative way, or tell you you're crazy. Run for the hills and keep searching for a good doctor who will take you seriously. I'm looking for a new GP and think I have found one I will go with who is a DO. You decide whether you get help or not, not 1 or even 20 doctors that are making fun of you. Shame on them!

Juda,

I so agree with all of these responses! You need to keep pursuing a neurologist or neurosurgeon that will look at your daughter's MRI and help you decide what to do. I am so sorry that your daughter is suffering and that doctor told you she is fine. 4.5mm is definitely within the Chiari "criteria". Wow. Ridiculous. Please keep us posted on what is happening with her.

Love,

Carla

Glad you are back!!

i agree also,

i have 8mm chiari, and told it wasnt causing problems, i go and see another NL 9th of may, so push my girl, dotn agree with them if it doesnt feel right.

please let us know how it goes,

joelene

First of all Welcome!!

Second...YES get a second opinion. I went to the Chiari Instute and they said that patients with less than a mm can have horrible symptoms and others with huge herniations can have none. Everyone is different, so do get a second opinion.

Lots of Luck and Prayers,

Crystal

I don't have any great advice. I just wanted to say I understand watching your child going through these severe headaches is so hard to do. My son started with the headaches at at 4 , he had the decompression at 5 and as with me his headaches were not helped with the surgery. I hope you find help for her, my thoughts are with you.

Carol

Carol,

You and your son both had decompression? Neither one of you are any better?

Carla

Carol6123 said:

I don't have any great advice. I just wanted to say I understand watching your child going through these severe headaches is so hard to do. My son started with the headaches at at 4 , he had the decompression at 5 and as with me his headaches were not helped with the surgery. I hope you find help for her, my thoughts are with you.

Carol

Yes we both have had decompression. When I found out I had it they didnt realize it could be inherited after about a year I knew my son had it also. Too much like me with sounds and sensitivites. No the surgery didn't help with our headaces but it does on some.

Carol

Carla Jo Stone said:

Carol,

You and your son both had decompression? Neither one of you are any better?

Carla

Carol6123 said:

I don't have any great advice. I just wanted to say I understand watching your child going through these severe headaches is so hard to do. My son started with the headaches at at 4 , he had the decompression at 5 and as with me his headaches were not helped with the surgery. I hope you find help for her, my thoughts are with you.

Carol