My 14 year old daughter has been experiencing drop attacks, seizures, black outs, headaches, constantly clears throat, and her heart rate increases to a rapid beat. I went to her primary care physician in March of last year expressing concern for the complaining of headaches and a change in her being sleepy stating she didn't feel good stomach upset etc. He said that teens are under a lot of stress and could be stress related and due to a situation with a teacher I thought maybe that was the issue. He said her passing out was possibly hormonal as she hadn't started yet. A month later she had a drop attack she went out cold in floor of our living room like a tree being cut down and hit stiff and hard we rushed her to Children's in St. Louis who then set us up with cardiology. The cardiologist did tests placed her on heart monitor that she wore for a month then told me to increase water intake and placed her on Florinef. We did all and the black outs and passing out continued and then on December 30th she had another drop attack that resulted in a seizure and was rushed by ambulance. Back to the cardiologist we went and she stated she wanted to place a device under her skin to monitor and would regulate her heart but before wanted us to go to neurology and have an EEG. We did this and then went to neurology and they scheduled MRI and EEG. After that I received the call that she had a Chiari Malformation and needed to meet with the Neurosurgeon. We met him and he said he didn't feel it was necessary to do surgery and there were no hard facts symptons were caused by Chiari and that he believed 5 mm wasn't bearing to operate or cause symptoms. He acted as if my child was a liar and that everything happening wasn't or at least I felt like that. The end of February she then was stopped up and ears were bothering and she had horrible headache asked me to get her from school and I took her to Urgent care for meds when we went into Urgent care she sneezed and out she went again. I have read so many places that all Chiari Malformation can be different some can be big with no symptoms some can be small and have them. I am about to lose my mind and I am so concerned about her and her well-being. I have contacted Mayo and am going to try and take her there for a second opinion. Anyone with experience or info please write and speak to me about things.
I'd like to start by saying that I am sorry you are going through this and that your daughter is going through all this. My last MRI on March 22, 2012 showed that mine is only around 4mm but my symptoms have been happening for about 8 years, the migraines started about 12 years ago or so. I'm surprised to hear that she is experiencing all these symptoms and not getting any help. I would recommend checking out the Resources and Doctors links on this page, I'm not a doctor but in my opinion I think you need to find a new Neurologist (NL) or a Neurosurgeon (NS). I've heard of people having surgery done at 3 mm which gave me hope that I may eventually find a doctor to help me with my 4 mm problem. If your daughter is at 5mm I would definitely get a second or third or whatever opinion from other NL/NS. Eventually someone will take her seriously and give her the help she needs. Whether her symptoms are from her Chiari or another underlying issue, she sounds like she needs help. Don't give up mom, persevere and get her the help she needs. Good luck!
I agree !.. Don't Give up !.. I was told i have a 5 mm and i can tell you i have had all the above as a Child.. I use to have Seizures all the time that i believe began with a Drop attack at a very young age I think i was in First grade..
Keep going to Doctors until you get someone who will Listen !..Maybe you could take her to a Neurologist outside of the town you live in ? just a thought. I think every Doctor will have a Different opinion of whats going on. I will Certainly keep you guys in my Prayers !..
Norma J
Thank you all for the information and prayers. I am attempting to send her to Mayo just awaiting the disc for MRIs she has had and the EEG to forward to them and then they will set up an appointment date. Its 9 hours away but I don't care my child's health is the main thing. Here is something that will shock you all and that I found so weird and also shows proof there is not enough awareness about this disease, My daughter's name is Chiara (Key-air-a) so when they said she had a Chiari Malformation I said did you name her brain only to be told no this is really what she has and it is the correct name. My stomach went to the floor and my heart through my chest as I learned more but I also know this is really seems to be the explanation for so much she has been going through. Yet they tell me not to worry there is no guarantee it could be causing the symptoms yet can't tell me what is and then they tell me to quit reading things as there isn't enough research and everyone experiences different things. Here's the deal I just want my child better. She has always been active and has achieved so so much and not just saying because she is my daughter I mean really she's an amazing girl who really is a positive leader and influence from being active in the Megan Meier Foundation (as a voice for Megan) by speaking to other youth about cyberbullying and bullying in general to being crowned in November as the 2012 World's Miss Jr Teen which is a scholarship pageant based off of public speaking, interview, academics, and volunteer work not just beauty. Since last March I have watched her decrease and complain of pain more than ever as well as the headaches, passing out, black outs, and drop attacks and thank God only one seizure so far. We went over a year with fears while she was active in things then they gave us what we thought were the answers in February only to still be playing the what should we do game lets try this and if this don't work try that but in the mean time my baby girl is suffering and I am getting fearful of the impact it will have on her everyday life and at what point is she going to receive the help she needs. I am totally scared and fearful that I'm not gonna have answers for her or get this to go away or ease up for her and as a mother and her being our only it is a really tough thing for us to deal with as well as the inability to understand everything as it seems like really no two cases are exactly the same and obviously all doctors have different views, plus I don't want her to be a guinea pig to a doctor who knows nothing or doesn't have a good understanding of the disease and brush her off. Sorry I went rattling on again but really no one understands unless they are there or have been. Its been very devastating to me.
What have they been able to do for you?
Abby said:
I have a 5mm herniation and POTS syndrome.
You might want to check the symptoms under Dysautonima.
Sorry that she is going through this. Know it's tough to see she suffer.
You both are in my prayers.
My son was 5 when he had his surgery an was only diagnosed 4 mints before. His was 12 mm but he had numerous mild symptoms. Our neurosurgeon was wonderful and after a short disciussion wanted to do surgery. Cincinnati Children’s Hospital is where we went. I would highly re moments them.
chiarimom98 said:
Thank you all for the information and prayers. I am attempting to send her to Mayo just awaiting the disc for MRIs she has had and the EEG to forward to them and then they will set up an appointment date. Its 9 hours away but I don’t care my child’s health is the main thing. Here is something that will shock you all and that I found so weird and also shows proof there is not enough awareness about this disease, My daughter’s name is Chiara (Key-air-a) so when they said she had a Chiari Malformation I said did you name her brain only to be told no this is really what she has and it is the correct name. My stomach went to the floor and my heart through my chest as I learned more but I also know this is really seems to be the explanation for so much she has been going through. Yet they tell me not to worry there is no guarantee it could be causing the symptoms yet can’t tell me what is and then they tell me to quit reading things as there isn’t enough research and everyone experiences different things. Here’s the deal I just want my child better. She has always been active and has achieved so so much and not just saying because she is my daughter I mean really she’s an amazing girl who really is a positive leader and influence from being active in the Megan Meier Foundation (as a voice for Megan) by speaking to other youth about cyberbullying and bullying in general to being crowned in November as the 2012 World’s Miss Jr Teen which is a scholarship pageant based off of public speaking, interview, academics, and volunteer work not just beauty. Since last March I have watched her decrease and complain of pain more than ever as well as the headaches, passing out, black outs, and drop attacks and thank God only one seizure so far. We went over a year with fears while she was active in things then they gave us what we thought were the answers in February only to still be playing the what should we do game lets try this and if this don’t work try that but in the mean time my baby girl is suffering and I am getting fearful of the impact it will have on her everyday life and at what point is she going to receive the help she needs. I am totally scared and fearful that I’m not gonna have answers for her or get this to go away or ease up for her and as a mother and her being our only it is a really tough thing for us to deal with as well as the inability to understand everything as it seems like really no two cases are exactly the same and obviously all doctors have different views, plus I don’t want her to be a guinea pig to a doctor who knows nothing or doesn’t have a good understanding of the disease and brush her off. Sorry I went rattling on again but really no one understands unless they are there or have been. Its been very devastating to me.
My son was 5 when he had his surgery an was only diagnosed 4 months before. His was 12 mm but he had numerous mild symptoms. Our neurosurgeon was wonderful and after a short disciussion wanted to do surgery. Cincinnati Children’s Hospital is where we went. I would highly recommend them.
chiarimom98 said:
Thank you all for the information and prayers. I am attempting to send her to Mayo just awaiting the disc for MRIs she has had and the EEG to forward to them and then they will set up an appointment date. Its 9 hours away but I don’t care my child’s health is the main thing. Here is something that will shock you all and that I found so weird and also shows proof there is not enough awareness about this disease, My daughter’s name is Chiara (Key-air-a) so when they said she had a Chiari Malformation I said did you name her brain only to be told no this is really what she has and it is the correct name. My stomach went to the floor and my heart through my chest as I learned more but I also know this is really seems to be the explanation for so much she has been going through. Yet they tell me not to worry there is no guarantee it could be causing the symptoms yet can’t tell me what is and then they tell me to quit reading things as there isn’t enough research and everyone experiences different things. Here’s the deal I just want my child better. She has always been active and has achieved so so much and not just saying because she is my daughter I mean really she’s an amazing girl who really is a positive leader and influence from being active in the Megan Meier Foundation (as a voice for Megan) by speaking to other youth about cyberbullying and bullying in general to being crowned in November as the 2012 World’s Miss Jr Teen which is a scholarship pageant based off of public speaking, interview, academics, and volunteer work not just beauty. Since last March I have watched her decrease and complain of pain more than ever as well as the headaches, passing out, black outs, and drop attacks and thank God only one seizure so far. We went over a year with fears while she was active in things then they gave us what we thought were the answers in February only to still be playing the what should we do game lets try this and if this don’t work try that but in the mean time my baby girl is suffering and I am getting fearful of the impact it will have on her everyday life and at what point is she going to receive the help she needs. I am totally scared and fearful that I’m not gonna have answers for her or get this to go away or ease up for her and as a mother and her being our only it is a really tough thing for us to deal with as well as the inability to understand everything as it seems like really no two cases are exactly the same and obviously all doctors have different views, plus I don’t want her to be a guinea pig to a doctor who knows nothing or doesn’t have a good understanding of the disease and brush her off. Sorry I went rattling on again but really no one understands unless they are there or have been. Its been very devastating to me.
It sounds exactly like what we have just experienced with our 10 year old Julia. She had the decompression surgery for her 5.8 herniation on 5/15 and is doing great. I still hold my breath when she coughs or sneezes but so far so good. When she was admitted to the hospital the first time for faiting the neurologist said it was incidental (her Chiari) and had nothing to do with her fainting. Her cardiologist said the fainting was also hormonal. We scheduled her for surgery after two top neurosurgeon consults. Our decision was not easy, as it shouldnt be. We really are not sure if her fainting, vertigo and increased heart rate has anything to do with Chiari but since the surgery(only 4 weeks) she has not complained about any of that. And the headaaches in the back of her head have not returned. I do have a feeling she might be doing so well because we found out she had a chiari malformation and decompressed her rather quickly. ( 3 months) But that is only my opinion. There are so many people on this site that will help you! Best of luck and prayers for your little one. xoxoxo Nicole