Thanks so much. My 11 year old just got this diagnosis yesterday afternoon. So I am going to be calling a Pediatric Neurologist and neurosurgeon today.
I truly believe God and my guardian angel were guiding me in finding this diagnosis for my son…or if you aren’t religious…a higher power, fate, etc. the day before yesterday I was sitting in my former office, now my CURRENT office since being back to my old job I was gone for several years with chronic migraines. My colleague told me about his three year old who had been experiencing many bad headaches over a length of time. Lo and behold, it was Chiari Malformation. They had recently found out and were looking for a Pediatric neurologist. Right then I thought boy my son john has been experiencing headaches now daily along with nausea. Missed so many school days. I really got to get him in. Made the call to paediatrician, really asked her to please can we get some imaging done of his head? Totally thinking I would need a disk when I went to take him for a migraine consult ( which was completely what I thought…my genes passed down to him, the nausea that he gets so bad, etc). Well she ordered MRI and we were to wait. I was called back and my pediatrician was on the phone and broke the news. I am scared for my son for what he is enduring now pain wise. Advil Tylenol nothing seems to work. I am scared for what he may go through in the near future. Any words of wisdom? Much appreciated in advance.
I believe in a higher power as well! God almighty and you will be in my prayers!
I know exactly what you going thru! My 13 yr old son was diagnose in January, the day after he was diagnosed with sleep apnea. He stayed with headaches, experienced insomnia, chronic fatigue, and other unexplained issues. We don’t want them to find anything wrong with our kids, but at the same time you finally get answers with a diagnosis. My son hasn’t been to school all week after just retuning last week from tonsils and adenoid removal. Its a challenge cause with every day, we don’t know which symptoms he will experience. Like my son told me, “its not his battle, its God’s and let HIS will be done”! May God bless you and your son with the strength and endurance it takes to be a Chiarian warrior.
Amen!
Seabrook21 said:
I believe in a higher power as well! God almighty and you will be in my prayers!
As a fellow believer in the one true God....PRAYER! There is nothing on this earth stronger than the power of a praying mother, I too, am a fellow Chiarian who suffers from the day to day aggrevation of nagging pain and a multitude of side effects to skull spliting migraines. I have two sons, one 23 and 17 neither of which have Chiari,(well, have only had Gavin 17 tested, Bryce was already off to college when I was diagnosed in March of 2013) I'm not sure I'm understanding you right...Do YOU have Chiari or are you a chronic migraine suffer? Anyway, as far as pain control or rather relief, I would sincerely try to keep it simple...ice paks, heat packs, showers and light massage...perhaps Excedrine migraine...You both are in for persciption hell! It has been my experience that some of the side effects from the perscribed medications are far worse than the pain and discomforts of the Chiari itself. As I'm sure you have read...you are in for hell when it comes to doctors, and yes even neurolist/surgeon, who are completely undereducated & refuse to listen. I am constantly finding myself having to educate medical personell on all the aspects/symptoms that are directly related to this disease...as well as, making them understand that the letters behind their name are merely PhD not GOD! (Yikes! Sorry for the rant) I also find that keeping myself somewhat humble is sometimes a better approach...i/e: " It is called "Practicing medicine" for a reason. Any doctor worth seeing twice will be and perhaps even eager to educate themselves or send you on. This is where the headache really begins....God bless and will be keeping you both in my prayers...Luvbug
You said a mouthful luvbug!
Hi Irishmom, I am sorry to hear of this. I encourage you to do a lot of research and explore different treatment avenues. While I know as a parent you are anxious to provide / find relief for your son, it would be good to look at the different treatment options and make a list of the pros and cons of each. Sometimes non-medicated options can help a lot. Luvbug made good suggestions with trying ice packs and keeping it simple. There are also pain management therapists who can help with learning coping techniques such as mindfulness and deep breathing. Please know I am thinking of you and keep us updated. Hugs.
God Bless your family on your road to healing!
God Bless all of you and all your children! You will be in my prayers!
Lenni
Thanks LenTe!
As Christian first trust God. Ask the Neuro surgeon very nicely to get a Radio Frequency Rhyzotomy done to nerve in neck. Best pain control I ever had. Still will feel pressure and other symptoms, but his life will be the closest thing to normal you will ever hope to get with this condition, as he will not be popping pain pills all the time. Mine lasted for two years before I had to go back for another one. I have had two done and had a decompression later when pressure became to much. All the best. Blessings in JC.
My best suggestion is to address what lies before you first and try not to imagine a horrible future. I can tell you that I have an incredible life and have been living with this issue for many years now.
Attitude and perspective to me are the two keys to having a better life, regardless of the circumstances. I also believe, like you, that we all have our backpack in life.
I do not believe mine is heavier due to my illness. Rather, I believe that this backpack is meant to teach me the lessons I am to learn in this life. So, I try to honor these lessons that are with me today and also honor the lessons other people in my life carry.
This journey can be so frightening at times and overwhelming, so please know my heart goes out to you during this time.
Thank goodness we are not on this journey alone. I am so grateful to this site and the many beautiful, kind, and caring people who greet me everyday.
Blessings, Brian
I absolutely believe in blessings. Another one is that you are close to Dr. David Frim at University of Chicago. He is my daughters neurosurgeon and I would not let anyone else touch her. He is absolutely amazing. We travel from Denver to see him and often meet other families from all over the US who have come to see him.
I would recommend getting your child into see him. New patient appointments can be several months out, so call and get the appointment in the works. Please feel free to message me if you have any questions.
It is so important to stay positive and do your own research so you can get through the maze of Dr.s My journey lasted 27+ yrs.only through God’s mercy I got to a NS who done my surgery and helped me so much.I hope you find the answers you and your son needs,you are in my prayers.
Hi there!
This is an EXTREMELY long post, and a bit forward in some spots, but my personal opinions and experiences. I don't think anything in here to be offensive, nor see how it could be, but if it somehow is I'll just apologize in advance haha.
Anyway, I figured I'll shed some light from the perspective of someone who has dealt with Chiari since being diagnosed at a very close age to that of your son.
I obviously can't speak for every young child who went through this, but from my experiences it's the parents whom worry most. The reason being. 1) He's your son; plain and simple. 2) The child just wants to be symptom free; the operation and or the overall attempt to rid symptoms is the clear cut goal.
The single most important recommendation I have would be to listen to your child.
Before I go any further, I have the utmost respect and love for my parents; they helped me through this every step of the way. That said, I know my own body, how I fell, and they didn't. Long story short (as short as possible :) ) , the main point stems from "The Boy who Cried Wolf."
---------
(The long story - read if you wish)
---------
I had my diagnosis and while my neurosurgeon had recommended minimally invasive bony decompression only, I begged and pleaded for the full operation. I had done copious amounts of research and known my body well enough to know that I scar very easily; therefore, I would almost certainly need the duraplsty sooner or later, even if only in an attempt to prevent scarring. My parents chose the doctors recommendation, and I really can't blame them for that; he is the doctor after all.
Post op, my pain went away. A few months later it all came back full force. I complained and missed school day after school day but my MRI's showed a full decompression and no issues. A second opinion ruled the same. My parents began to believe that I was making up my pain, or that it was in my head and psychological; that I had some weird reason as to why i just didnt want to go to school. I even had an ICP monitor procedure and that showed no issues in regards to hypertension. After numerous attempts on about 7 different medications and another year down the drain they agreed to let my neurosurgeon operate based solely on symptoms. Lo and behold I had insane amounts of scarring resulting from my previous decompression surgery.
If i had been taken seriously with my own opinion and choice to have the full operation, including a duraplasty to begin with, one can only presume that minimal scar tissue would have developed over the patched used, and I would have saved a year and a half worth of testing and medication.
The role of the parents in a situation like this is extremely difficult, as is the child's. I have forgiven my parents for not letting me get the full operation. I understand there reasoning completely. The duraplasty adds a significant amount of risk on top of the base decompression surgery, and the risk was unjustified as stated by the doctor. They didn't want to take that risk.
However, I did. My reasons are just as understandable as there's. I went through years and years of constant pain. I wanted it gone. I was willing to take the added risks knowing how much it would reduce the chance of reoperation; the additional pain and suffering i would go through during my extended recovery would be nothing compared to that of the struggle i would have to go through if i needed re operation.
Once again, we reach another age old question. Do the ends justify the means? It's extremely subjective on a case by case basis; I know that. The point is that the child doesn't know everything, nor the neurosurgeon who specializes in chiari, and neither do the parents. Every single case is significantly different than the last.
-----------
END LONG STORY
-----------
My conclusion being this; open communication and education. Communicate openly with your child and the doctors. Try and understand what each other is going through during this time. Educate yourselves as much as possible. If everyone is in agreement and on the same page than you can just keep comfortably trucking along; conquering every road block that may pop up, one by one.
In this world, being positive is everything.
------
This is some advice I'd like for you to relay to your son. If you agree with it that is.
------
For those who don't have chiari, it's looked at as an illness, a curse. To me, I find it as a challenge. If there's one thing I love, it's challenges. Truly! I love when someone comes up to me and says I can't do something. Wanna know why? It's simple, because the look on their face when I do in fact do it, is priceless. Chiari itself is the true challenge. You wake up everyday and it's staring you dead in the face; looking you deep in the eyes saying, "You're gonna have a horrible day. You wanna go to school, I'm not going to let you!" That's when you roll out of bed, put your feet flat on the ground and stand up, because you're not going to let him win. You eat, get dressed, and go to school because there isn't anything that's going to stop you.
That's what I want you to try and do. I'm going to be honest now, it's tough. It is extremely difficult; every day is its own minor struggle. There were many many days where I just couldn't go to school, but guess what? On the days when I somehow was not doing so bad, I worked five times as hard as everyone else. I missed at least two months of school for every year I was in high school for operation recovery time. That doesn't include the enormous amount of time I missed for painful days. That said, I graduated with the top of my class; fantastic grades. Chiari didn't stop me in my school education, it won't stop me in my college education, and it won't stop me from living my life to the fullest. I wish you the best of luck in your new found challenge, and hope you learn to show it who's boss. If you ever need advice, just message me!
Very well put! Straight with no chaser!
thegun2 said:
Hi there!
This is an EXTREMELY long post, and a bit forward in some spots, but my personal opinions and experiences. I don’t think anything in here to be offensive, nor see how it could be, but if it somehow is I’ll just apologize in advance haha.
Anyway, I figured I’ll shed some light from the perspective of someone who has dealt with Chiari since being diagnosed at a very close age to that of your son.
I obviously can’t speak for every young child who went through this, but from my experiences it’s the parents whom worry most. The reason being. 1) He’s your son; plain and simple. 2) The child just wants to be symptom free; the operation and or the overall attempt to rid symptoms is the clear cut goal.
The single most important recommendation I have would be to listen to your child.
Before I go any further, I have the utmost respect and love for my parents; they helped me through this every step of the way. That said, I know my own body, how I fell, and they didn’t. Long story short (as short as possible
) , the main point stems from “The Boy who Cried Wolf.”
---------
(The long story - read if you wish)
---------
I had my diagnosis and while my neurosurgeon had recommended minimally invasive bony decompression only, I begged and pleaded for the full operation. I had done copious amounts of research and known my body well enough to know that I scar very easily; therefore, I would almost certainly need the duraplsty sooner or later, even if only in an attempt to prevent scarring. My parents chose the doctors recommendation, and I really can’t blame them for that; he is the doctor after all.
Post op, my pain went away. A few months later it all came back full force. I complained and missed school day after school day but my MRI’s showed a full decompression and no issues. A second opinion ruled the same. My parents began to believe that I was making up my pain, or that it was in my head and psychological; that I had some weird reason as to why i just didnt want to go to school. I even had an ICP monitor procedure and that showed no issues in regards to hypertension. After numerous attempts on about 7 different medications and another year down the drain they agreed to let my neurosurgeon operate based solely on symptoms. Lo and behold I had insane amounts of scarring resulting from my previous decompression surgery.
If i had been taken seriously with my own opinion and choice to have the full operation, including a duraplasty to begin with, one can only presume that minimal scar tissue would have developed over the patched used, and I would have saved a year and a half worth of testing and medication.
The role of the parents in a situation like this is extremely difficult, as is the child’s. I have forgiven my parents for not letting me get the full operation. I understand there reasoning completely. The duraplasty adds a significant amount of risk on top of the base decompression surgery, and the risk was unjustified as stated by the doctor. They didn’t want to take that risk.
However, I did. My reasons are just as understandable as there’s. I went through years and years of constant pain. I wanted it gone. I was willing to take the added risks knowing how much it would reduce the chance of reoperation; the additional pain and suffering i would go through during my extended recovery would be nothing compared to that of the struggle i would have to go through if i needed re operation.
Once again, we reach another age old question. Do the ends justify the means? It’s extremely subjective on a case by case basis; I know that. The point is that the child doesn’t know everything, nor the neurosurgeon who specializes in chiari, and neither do the parents. Every single case is significantly different than the last.
-----------
END LONG STORY
-----------
My conclusion being this; open communication and education. Communicate openly with your child and the doctors. Try and understand what each other is going through during this time. Educate yourselves as much as possible. If everyone is in agreement and on the same page than you can just keep comfortably trucking along; conquering every road block that may pop up, one by one.
In this world, being positive is everything.
------
This is some advice I’d like for you to relay to your son. If you agree with it that is.
------
For those who don’t have chiari, it’s looked at as an illness, a curse. To me, I find it as a challenge. If there’s one thing I love, it’s challenges. Truly! I love when someone comes up to me and says I can’t do something. Wanna know why? It’s simple, because the look on their face when I do in fact do it, is priceless. Chiari itself is the true challenge. You wake up everyday and it’s staring you dead in the face; looking you deep in the eyes saying, “You’re gonna have a horrible day. You wanna go to school, I’m not going to let you!” That’s when you roll out of bed, put your feet flat on the ground and stand up, because you’re not going to let him win. You eat, get dressed, and go to school because there isn’t anything that’s going to stop you.
That’s what I want you to try and do. I’m going to be honest now, it’s tough. It is extremely difficult; every day is its own minor struggle. There were many many days where I just couldn’t go to school, but guess what? On the days when I somehow was not doing so bad, I worked five times as hard as everyone else. I missed at least two months of school for every year I was in high school for operation recovery time. That doesn’t include the enormous amount of time I missed for painful days. That said, I graduated with the top of my class; fantastic grades. Chiari didn’t stop me in my school education, it won’t stop me in my college education, and it won’t stop me from living my life to the fullest. I wish you the best of luck in your new found challenge, and hope you learn to show it who’s boss. If you ever need advice, just message me!
Darla, you rock!
Hi, this is my biggest fear, that I may have passed this condition onto one of my sons, age 7 and 9. They are perfectly well but then so was I until the age of 43. I never got the headache just pins and needles in my left arm.
You need to know how many mm his herniation is and make sure it's not blocking the spinal fluids flow, otherwise this can lead to a blockage in the spinal cord and then he will need decompression surgery.
I had the decompression surgery 3.5 years ago and I'm perfectly fine and lead a normal life. Good luck to your son and you.
Thanks soup, I don’t know why I rock, but I’ll take that compliment! 
soup said:
Darla, you rock!
Hey, I am a 15 year old girl, I am CHIARI malformation so I know what it feels like! My name is lauren and if your son would like to talk about it tell him and I would also like to talk to someone about it! I am only a few years older than him so it should work out! I think that younger kids can comunicated better with younger kids than with adult and parents.