My daughter has just been diagnosed with chiari 1 with 15mm herniating. she is in constant pain and severely sensitive to light. Headaches come and go but the neck pain is always there…more severe at times than others. Today she complained of sharp stabbing pains shooting down her back…also her neck is sensitive to even touch. How do you know when or if you should go to the ER?? We have an appointment with neurosurgeon Wednesday, but she seems to be in more and more pain each day. Her primary dr couldn’t even pronounce chiari and brought the medical dictionary into exams room to read definition when telling us the MRI results. So she isn’t much help, though I am thankful that she led us to the proper tests to help diagnose. I just have so many questions… Activity restrictions? Traveling long distances?(it is the holidays) meds that might help? I have searched the Internet for these answers but thought those who are going through chiari might have better tips.
Thanks for any input!!
REST!!! If she is in pain and you opt for waiting, encourage her to rest, sitting or lying with head elevated–recliners can be great. If she says or you think the pain is different, too intense, or just unmanageable-definitely go to the ER. At the least they can help manage the pain.
Chiair is this thorn that makes life SLOOOOOOW down. She needs to pay attention to when the pain begins, before it’s overwhelming to stop. I had a really hard time with this. I would feel the pain come on, then just try to push through it and end up in bed, blinds closed, fetal position.
As far as activity, I would say as little as possible until Wednesday. Road trips would depend on her, the light sensitivity, and distance. My doc recommends stops every 45 at a place to get out, stretch and loosen up.
Meds vary for every patient. For me, the best meds were Imitrex, a heating pad, ice pack, and Icy Hot. Nothing worked prevention wise. I would sit in a tub of hot water with an ice pack on the back of my neck.
If you opt to not see a dr immediately, keep a close eye on her!!! Don’t let her overdo it or lift, twist, pull, strain, etc. Hope this helps!
Melody, an ER visit can get some much needed relief from the severe pain…I say if the question is raised you should probably go. I have more to say tomorrow, but if the pain is that severe take her in. I’m glad you found us.
Jenn
Thank you so much for your replies! After resting for an hour lights out reclined the pain became tolerable. It never goes away of course. i think her problem is to try to push through the pain also thinking it will get better if She just keep going but that makes it unbearable! Got to learn to take it easy. She hates to complain and feels others will not believe her or think she’s exaggerating…from the outside she looks like a healthy teenager… If people only knew the battle that “chiarians” face!! I had never heard of this condition and I work in the medical field!! Thanks so much for the support. I feel some relief knowing I can pop in and ask a question anytime and maybe someday I will be able to offer advice also.
Melody
I’m so glad she has got a little relief!!! We all were in her shoes at one point!!! I totally understand her battle because I fought it for years and I’m only 29. I look and am otherwise completely healthy. She has to learn to stop when it first starts-- its harder than I ever thought.
Melody, since her neck is so painful you should look into the possibility of cervical instability and especially CRANIO CERVICAL instability. Many of us have Ehlers a Danlos Syndrome- that causes ligaments to become lax and allow for abnormal movement of the cranio cervical joint, or any other in the body. You should also take a very close look at a retroflexed odontoid- this is a congenital type of CCI. There are several different types of CCI and the symptoms all mimic Chiari symptoms.
EDS- Google the Brighyon criteria and the Beighton criteria
CCI- go CSFinfo.org, videos, metropolitan are, any video about CCI and EDS or the complex Chiari patient.
I had CCI that was discovered after a failed decomoression. I had to search out an NS who specializes in Chiari and CCI. While I waited to have my fusion I wore a cervical collar- and wow what a difference it made in the pain level. The idea of the collar is to restrict movement of the neck, which in CCI patients, will stretch and deform the spinal cord. With the movement restricted the pain level lessened.
Let us now how the appt goes and give her a hug from us.
Jenn
Thank you for all the helpful info! I’m so anxious to hear what the Nero has to say.
In response to Rebecca the neurosurgeon is at St. Louis childrens DR T.S. Park. He was recommended to me by a couple of co workers one of which who’s son has Chiari. Chiari malformation is listed under the specialities that he treats. I also found research papers he has wrote on Chiari, but they are all older. So… He isn’t listed on the recommended dr list… But there are not very many from Missouri and most dont recommend a dr just St. Louis childrens hospital.
We live about an hour away from St Louis but if I have to take her to the ER I would drive there first. Today has been a good day. She is in pain but it has been mostly tolerable. We went to church today as usual and prayed and prayed 
I feel Gods peace even though we don’t understand the “whys”.
So we ended up in ER. So hard to see my baby in pain. They have given her oxycodone which makes me nervous. Any thoughts on effectiveness for Chiari pain? I know this drug can be very addictive… So I’m so unsure of starting her on it… But I don’t want her in pain either…
If you are worried about her becoming addictive, keep the medication with you or count the pills and make sure she isn’t taking more than the recommended dose and that she is only taking them when needed. I am on percocet, my dr is very worried I will become addicted (I hate how they make me fuzzy mentally so I can’t sleep when I take them cuz my body won’t allow it) but I make sure I only take them if my pain is bad enough that I am ‘seeing sound’… otherwise I just suffer through the pain.
I think the best option, in my opinion, is to keep the medication where you both can access it, like the bathroom or kitchen, and count the pills every day. I count my pills every day to ensure I’m taking no more than 4 in a day and to also make sure that I will have enough to last me until my next appointment. My doctor has started putting a ‘no refill prior to: _____’ label on my medication to make sure I don’t become addicted.
I’m frustrated and confused this morning. They told us in ER thst my daughter needs to see a neurologist to manage her headaches that the Chiari is somtimes an “incidental finding” on the MRI and may not be a the source of her headaches??? What?? I thought we had finally found the problem. I’m praying the neurosurgern knows more about this condition. Are most of you seeing neurosurgeons and neurologists too?
On a good note the oxy help my daughter sleep well, it never took all the pain away and she’s in pain this morning but it’s tolerable. They just gave her a one time dose so…no script. Praying the pain stays tolerable till we see dr on Wednesday.
I found little help with my neurologist sadly. I would see what the surgeon has to say since they have more actual experience with Chiari. It's very promising that you know of another chiari patient who was helped by this doctor. Pediatric neurosurgeons usually have a little more experience with Chiari because they see more of it in that age group!
Rebecca yes that is a pic I took of her MRI. I have it on cd…wasn’t sure I took a good picture of the actually problem but I think I can tell where the herniation starts. I have copies on cd of MRI and radiology report and will keep a set of records to take with me. I’m also making a list of questions so I won’t have brain freeze when we see dr.
Jenn- I will defiantly look into your info and about a cervical collar for neck pain relief.
NieNie- that’s good idea for narcs if she is ever given a script. Thx
Beeba- yes at least the Meds helped her actually sleep. She said was the best she has slept in weeks.
To all of you thank you for this support!! I really needed somewhere to go that knows what’s going on!!