leo91
Gold
Posts: 653 Likes: 3,295
|
Post by leo91 on Aug 31, 2018 20:13:54 GMT -6
Hi, haven’t been here in awhile! Popping in.
So my DD, 4 in December, was diagnosed this week with a Chiari malformation (where the brain tissue extends down into the spinal column).She had an MRI on Wednesday, which was ordered by her GI to check for a tethered cord. No tethered cord, but this malformation was found instead. She has no symptoms right now that are associated with this. We meet with a neurosurgeon on Wednesday to discuss if/when treatment is needed at some point.
Are there any other moms here with a kid that has this? Looking for wisdom, good anecdotes, good research, whatever you may have. Thanks!
|
|
|
Post by wildflower on Aug 31, 2018 20:16:17 GMT -6
Hi! Not chiari, but DS2 was dxed with hydrocephalus at 4.5 months old. He's a year (exactly, today!!) Post op from his most recent brain surgery. I'm heading to bed now, but I can share more tomorrow. Have they looked for hydrocephalus as well? Chiari often comes with hydro.
|
|
leo91
Gold
Posts: 653 Likes: 3,295
|
Post by leo91 on Aug 31, 2018 20:26:21 GMT -6
Hi! Not chiari, but DS2 was dxed with hydrocephalus at 4.5 months old. He's a year (exactly, today!!) Post op from his most recent brain surgery. I'm heading to bed now, but I can share more tomorrow. Have they looked for hydrocephalus as well? Chiari often comes with hydro. No, they haven’t. Finding the Chiari was really a complete accident. She has had major constipation issues forever now, so that’s why I took her to a GI to try and rule some things out. Since we mentioned sometimes she tends to walk on her toes, they ordered the MRI just to check for a tethered cord, since she had symptoms of that. The GI couldn’t really tell me any more, just that we pretty much have to wait until we see the neurosurgeon
|
|
kmkd
Amethyst
Posts: 6,897 Likes: 28,678
|
Post by kmkd on Aug 31, 2018 20:31:36 GMT -6
I don’t have personal experience, I’m just a peds PT who works in hospitals. IME when it’s found incidentally, it’s not usually an issue. If it had been found because of headaches or other symptoms, that may have been different. I think it’s one of those things that a lot of people are probably walking around with and have no idea. If she’s not having any issues, they likely don’t do anything and will just monitor. Just a guess. ::standard I am not a doctor disclaimer::
|
|
Cher
Global Moderator
BMB, GD, Special Interests
Posts: 57,627 Likes: 442,460
|
Post by Cher on Aug 31, 2018 20:42:07 GMT -6
Hey! No experience but I miss you and I’m thinking good thoughts for you guys.
|
|
lfig
Sapphire
Posts: 4,377 Likes: 33,769
|
Post by lfig on Aug 31, 2018 22:03:02 GMT -6
Hi, my 4 year old daughter has a Chiari Malformation. She also has hydrocephalus and epilepsy. She does not have any symptoms and therefore we will just KOKO unless she starts to exhibit symptoms. There are apparently tons of people walking around that have it and have no clue for their entire lives. My daughters was discovered because of multiple MRIs for her hydrocephalus. Although it is likely a result of her hydrocephalus. I hope you get some good info from the neurosurgeon and are able to just keep an eye on it and not need any intervention. Good luck!
|
|
|
Post by shambam08 on Aug 31, 2018 23:29:16 GMT -6
My husband has this. It was discovered when he was in his 20’s. He has never had any issues with it. He does have a yearly scan to make sure all is well.
|
|
|
Post by campermom on Sept 1, 2018 3:33:55 GMT -6
My nephew has it and it was discovered when he had a concussion. He was monitored and had lots of MRI’s and other scans over the years. He had to go under for some of them due to his age at the time. He does not have hydrocephalus or any other associated complications. He has never had any of the symptoms like headaches or anything. He is a very bright happy healthy athlete.
He did have restrictions on sports-he couldn’t play football or play on trampolines. He plays other sports like basketball and baseball.
|
|
|
Post by wesleycrusher on Sept 1, 2018 5:41:40 GMT -6
I had a friend who didn't discover it until she was in her 30s and she had some symptoms associated with it (headache was a big one). She had the surgery a year or two ago and has had no problems since. I would think since your DD is asymptomatic they would monitor until/unless it becomes an issue.
|
|
|
Post by ArielMermaid on Sept 1, 2018 5:51:36 GMT -6
My nephew will be 9 next month, he was diagnosed this year. He has had the migraines and that’s why they found it. If he runs and rough houses a lot he gets the migraines. He will have to limit the sports he plays because if he runs around too much he feels awful, other than that he is completely healthy and fine.
|
|
leo91
Gold
Posts: 653 Likes: 3,295
|
Post by leo91 on Sept 1, 2018 7:20:27 GMT -6
Thanks everyone! These replies are making me feel better. I have been feeling like it’ll be something that will always be in the back of my mind and I’ll just be anticipating symptoms to show up. Looking forward to seeing the neuro doc next week to get more answers.
|
|
|
Post by tattooedtragedy on Sept 1, 2018 7:51:23 GMT -6
I have no personal experience but a girl I went to high school has this and she posts about it frequently, I think she does some work with a local charity that raises awareness. I think she was got the DX in her early 30s trying to resolve migraine issues
|
|
bobyn
Diamond
local baby-making menace
Posts: 27,900 Likes: 167,315
|
Post by bobyn on Sept 1, 2018 8:11:08 GMT -6
DH has a cousin who has this. I believe she had corrective surgery and she is a fully functioning adult going to nursing school now. And I don’t know if she posts anymore, but I believe leroybrown also has a DD with Chiari malformation.
|
|
|
Post by loislayn on Sept 1, 2018 8:21:32 GMT -6
Hi, haven’t been here in awhile! Popping in. So my DD, 4 in December, was diagnosed this week with a Chiari malformation (where the brain tissue extends down into the spinal column).She had an MRI on Wednesday, which was ordered by her GI to check for a tethered cord. No tethered cord, but this malformation was found instead. She has no symptoms right now that are associated with this. We meet with a neurosurgeon on Wednesday to discuss if/when treatment is needed at some point. Are there any other moms here with a kid that has this? Looking for wisdom, good anecdotes, good research, whatever you may have. Thanks! Hello! Our daughter was diagnosed two years ago after severe headaches. She just had the decompression surgery in November in Chicago because she had developed a serious in her spine that was causing more symptoms. Otherwise she is doing very very well! I’m happy to chat about it anytime. My biggest piece of advice would be to Google your neurosurgeons specifically related to Chiari because they’re only a handful in the country that are truly specialist. Dr. Greenfield in New York City and Dr.Frim. He is in Chicago. We travel to see him. There are many doctors that will say they know about it but are not truly specialist and can do a lot of damage or cause the need for more future surgeries.
|
|
lfig
Sapphire
Posts: 4,377 Likes: 33,769
|
Post by lfig on Sept 1, 2018 11:56:29 GMT -6
Hi, haven’t been here in awhile! Popping in. So my DD, 4 in December, was diagnosed this week with a Chiari malformation (where the brain tissue extends down into the spinal column).She had an MRI on Wednesday, which was ordered by her GI to check for a tethered cord. No tethered cord, but this malformation was found instead. She has no symptoms right now that are associated with this. We meet with a neurosurgeon on Wednesday to discuss if/when treatment is needed at some point. Are there any other moms here with a kid that has this? Looking for wisdom, good anecdotes, good research, whatever you may have. Thanks! Hello! Our daughter was diagnosed two years ago after severe headaches. She just had the decompression surgery in November in Chicago because she had developed a serious in her spine that was causing more symptoms. Otherwise she is doing very very well! I’m happy to chat about it anytime. My biggest piece of advice would be to Google your neurosurgeons specifically related to Chiari because they’re only a handful in the country that are truly specialist. Dr. Greenfield in New York City and Dr.Frim. He is in Chicago. We travel to see him. There are many doctors that will say they know about it but are not truly specialist and can do a lot of damage or cause the need for more future surgeries. I’d like to echo these sentiments! Sadly there are a lot of doctors that *think* they know all about it but really don’t. So definitely find someone who specializes in it. I’ve heard a lot of amazing things about Dr. Frim. And I don’t know your location but we are in the St. Louis area and my daughter’s NSG specializes in it as well. Dr. Smyth.
|
|
leo91
Gold
Posts: 653 Likes: 3,295
|
Post by leo91 on Sept 5, 2018 20:17:10 GMT -6
Just wanted to give an update.
We met with the neurosurgeon today. Brain surgery is in our very near future. Along with the Chiari, she has a large syrinx (build up of fluid on the spinal cord), which is therefore putting pressure on her spinal cord. If she just had the Chiari, we would monitor. But since she has this other issue, surgery is needed. It’ll be a 3-5 hour surgery, and will probably take place in late December/early January so that I can dip into next years PTO. We have another MRI next week and will set a surgery date then.
We have a hard journey ahead of us. If you would’ve told me a month ago that my 3 year old needed brain surgery, I would’ve thought you were crazy. But these are the cards we were dealt so we are gonna handle it like bosses.
|
|
addymac
Emerald
Posts: 12,718 Likes: 54,240
|
Post by addymac on Sept 5, 2018 20:26:43 GMT -6
Good luck! Sending positive thoughts that all will go well with the surgery. Keep us updated when it happens. We’re good for hand holding while you wait. I am sorry you have to go through this. But it sounds like you’ve got a good plan in place. 💜
|
|
|
Post by sweptaway on Sept 5, 2018 20:26:48 GMT -6
leo91 I'm sorry you have a harder path ahead than you expected. It sounds like you have a good plan and handle on it, but things are bound to be scary and stressful and we will be here for you
|
|
Bluebird
Amethyst
Posts: 6,405 Likes: 22,234
|
Post by Bluebird on Sept 5, 2018 20:29:30 GMT -6
I’m sorry you have to go through all this. It sounds really intense. We are here when you need to vent or to be distracted. Lots of love and good thoughts to you and your family!
|
|
|
Post by beesquared on Sept 5, 2018 21:54:21 GMT -6
I am sorry you are dealing with this. Positive thoughts for safe treatment and a speedy recovery.
|
|
cnf
Ruby
Posts: 20,996 Likes: 101,313
|
Post by cnf on Sept 5, 2018 22:33:01 GMT -6
I'm so sorry. You sound like you're planning to tackle this with a lot of strength. Good luck and keep us updated.
|
|
|
Post by ArielMermaid on Sept 5, 2018 23:55:13 GMT -6
You’re a badass. Best of luck to you and your little. Will be thinking of you. Please keep us updated.
|
|
klw
Opal
Posts: 8,735 Likes: 21,531
|
Post by klw on Sept 6, 2018 4:03:41 GMT -6
leo91 Just want to say that you have an amazing attitude and that I will be keeping you all in my thoughts. Good luck!
|
|
|
Post by marygracerich on Sept 6, 2018 7:03:00 GMT -6
I’m sorry you got crappy news. Good luck!
|
|
Pizzaslut
Ruby
*it’s a joke. get some hobbies.
Posts: 22,728 Likes: 131,010
|
Post by Pizzaslut on Sept 6, 2018 9:38:37 GMT -6
leo91, I'm sorry you are all going through this. We are here when you need us. YOU GOT THIS!
|
|
microworm
Emerald
Posts: 13,384 Likes: 84,844
Member is Online
|
Post by microworm on Sept 6, 2018 9:43:35 GMT -6
leo91 you are a boss with a great attitude. So sorry these are the cards that were dealt to you, though.
|
|
kmkd
Amethyst
Posts: 6,897 Likes: 28,678
|
Post by kmkd on Sept 6, 2018 9:50:56 GMT -6
Good luck! You have a great attitude and you’re all going to handle it like champs. Best wishes.
|
|
|
Post by goldenbird on Sept 6, 2018 10:03:11 GMT -6
I'm sorry that surgery is needed and so soon, but you have a great attitude and I know your DD will pick up on that. We're here for you!
|
|
lfig
Sapphire
Posts: 4,377 Likes: 33,769
|
Post by lfig on Sept 7, 2018 14:44:51 GMT -6
I’m sorry that you are going down the brain surgery path. However, glad you have some answers and a plan. Although my 4 year old daughter has not been decompressed, she has had 5 brain surgeries and she has bounced back amazingly well from them each time. Way better than her tonsillectomy a month ago! That was awful! Lol.
There are several FB groups for Chiari as well, but I have yet to find one that is helpful. They are mostly filled with drama and attention seekers. A bunch of fruits and nuts. I ended up leaving the groups because of that. So just wanted to forewarn you.
Good luck on the road ahead and keep us updated!
|
|