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My son was just diagnosed, are worse symptoms and surgery inevitable?
My son started having headaches and we had an MRI done and discovered he has Chiari 1 (about 9.5mm). After seeing a neurologist, his headaches have been determined to have nothing to do with Chiari. After several tests, they have seen no symptoms of the Chiari. We pulled him from football, but he is only 13... He will chose a sport, but no contact (more like track and field maybe). The neurologist was not concerned with the Chiari at all at this point. My son is very active, coordinated, straight spine, no symptoms.. just frequent (bad) headaches, no trigger found, but they are not at the back of the head. Is it inevitable that he will develop symptoms or have to have surgery- or are there people out there that have it & live normal lives?
I've had Chiari Symptoms since I was 1 1/2 and learned to walk, but I didn't need surgery or even know something was wrong until I was 21. (As SelmaS said, i thought all my symptoms were normal because I had them forever). There are hundreds of people who have Chiari but their heads and skulls are big enough to accommodate the shift in brain and so they never know or need surgery.
Now that he knows I would schedule him at least 1 appointment with a good Chiari familiar neurologist or surgeon because a neurologist who isn't familiar with Chiari probably couldn't say his symptoms weren't chiari related. I had a neurologist who diagnosed my chiari and told me when he told me about the Chiari that NONE of my symptoms were related to the Chiari. I looked it up myself and asked my surgeon once I knew what was wrong and he told me I had text book Chiari and they explained ALL of my symptoms. If it was my kid, i would want to be safe rather than sorry later because you never know.
There is no guarantee that your son's symptoms will get worse or that he'll need surgery later but if he does need surgery that wont be the end of the world necessarily either. Most people who need a Chiari surgery only need 1 and then won't need another one until about 10 or 15 years later. Not everyone has these terrible complications where Chiari 1 is a constant struggle.
A couple tips of advice though, that I wish I knew when I was diagnosed are that if he does end up some day needing a Chiari decompression surgery:
+ make sure he doesn't have a hard to diagnose tethered cord (that's what caused the beginning of my complications).
AND
+ If he does have a complication called Hydrocephalus, that they do not put in a SHUNT first thing. A V/P Shunt is, in most cases, forever so if he has one put in before he's SURE he needs it, he could end up having countless surgeries because of the shunt only (I've had 4 shunt surgeries alone and this week it may be 5) but my new Neurosurgeon (the best i've met for sure) told me that 80% of people who have Slit-Ventricle Syndrome (A complication of the shunt) and who need surgery OFTEN tend to have Chiari. There's something about the mix of both of them together that can really upset the shunt and make the shunt fail more often.
I wish your son the very best of luck, and you as well. And Welcome to the Chiari Community. I hope we are able to help you and your son <3
Now that he knows I would schedule him at least 1 appointment with a good Chiari familiar neurologist or surgeon because a neurologist who isn't familiar with Chiari probably couldn't say his symptoms weren't chiari related. I had a neurologist who diagnosed my chiari and told me when he told me about the Chiari that NONE of my symptoms were related to the Chiari. I looked it up myself and asked my surgeon once I knew what was wrong and he told me I had text book Chiari and they explained ALL of my symptoms. If it was my kid, i would want to be safe rather than sorry later because you never know.
There is no guarantee that your son's symptoms will get worse or that he'll need surgery later but if he does need surgery that wont be the end of the world necessarily either. Most people who need a Chiari surgery only need 1 and then won't need another one until about 10 or 15 years later. Not everyone has these terrible complications where Chiari 1 is a constant struggle.
A couple tips of advice though, that I wish I knew when I was diagnosed are that if he does end up some day needing a Chiari decompression surgery:
+ make sure he doesn't have a hard to diagnose tethered cord (that's what caused the beginning of my complications).
AND
+ If he does have a complication called Hydrocephalus, that they do not put in a SHUNT first thing. A V/P Shunt is, in most cases, forever so if he has one put in before he's SURE he needs it, he could end up having countless surgeries because of the shunt only (I've had 4 shunt surgeries alone and this week it may be 5) but my new Neurosurgeon (the best i've met for sure) told me that 80% of people who have Slit-Ventricle Syndrome (A complication of the shunt) and who need surgery OFTEN tend to have Chiari. There's something about the mix of both of them together that can really upset the shunt and make the shunt fail more often.
I wish your son the very best of luck, and you as well. And Welcome to the Chiari Community. I hope we are able to help you and your son <3
COMMUNITY LEADER
Hi Jadams9602 and welcome to the Chiari forum.
Bot ALL Drs are well informed or experience in dealing with Chiari and the related conditions....stopping the football is a great idea....and if track causes issues he may want to stop that at that time.....
Each of us diagnosed with this experience it differently. Since Chiari is a congenital condition we do not realize many of the symptoms we do have when asked since we have always had them, they seem to be "normal"...we think every one feels like we do and do not offer up those symptoms as symptoms when we are asked....and I also felt that the way a Dr asked for a list of symptoms is very confusing as to what they mean....
I would suggest more testing to see if he may have a syrinx or a CSF obstruction....then he may be able to just be monitored for now....I know I had symptoms when I was young and still in school....but back then there were no MRI's being done to DX conditions like this. Plus, Drs always seems to try to say I had anxiety and migraines...
What caused you to have the testing done that found the Chiari?
Hi, and welcome to the forum.
It is so frustrating and difficult to get all the answers to the questions we have, but I just wanted to give you perspective from someone who has had this without a diagnoses for most of my life. I am now 61.
I had the same kind of symptoms when I was 13. Bad pounding headaches, at the back of my head but also all over and especially after straining. Being in an environment like school portables, or mildewed cottages, damp woods where there was mold would also bring them on for me.
In grade nine I would almost have to crawl home from school they were so excruciating and in retrospect I am sure it was the portables that did it. I had huge concentration problems all that year and as a result had to repeat it. Interestingly, when I lost 35 pounds in grade ten I felt much better in my ability to concentrate and went on to university.
Of course they didn't have MRI's back then but I knew for certain there was something wrong. I had some bad accidents after that, falling on concrete from the roof of a barn, whiplash and more. I observed that I was different, that life was not as easy for me as other people. I would burn out quickly and could not be around chemicals when others had no problem. Had to give up my darkroom career and wanted to be a hairdresser but I knew the chemicals would get to me.
But what I want to say is, there were many years when I was much less symptomatic and I pushed out two babies without medication at all, natural births at home. If I had known I had a chiari, I might have been too afraid to give birth. As far as I know it didn't make things worse. I managed to find the energy to work and raise them, with periods of having to take time off. I am glad I didn't have an epidural now, because I've read that spinals can pull the tonsils down further, if not done right.
It has really only caught up with me to the point that I can't work anymore in the last decade. But perhaps if I had known, I would have been kinder to my body. That would have been the main difference. So if I had a child with Chiari but no symptoms, I would make sure they understood everything about it. I would tell them they need to stay very healthy. Maintain a healthy weight, avoid chemicals and junky food, cigarette smoke, drugs, stay fit but be careful with the neck.
Tell him to try to pay attention to see if he can figure out what triggers the headaches. Sometimes it can be food sensitivities, environmental or stress. You can get pressure from too much water building up in your brain, or from inflammation from autoimmune problems due to sensitivities. I have gone on a low-carb diet recently because it makes you lose a lot of water as well as weight, and I have had a CSF blockage. My head feels a lot clearer. So if he became symptomatic, he could try things like that.
I would say, and I am NOT an expert just someone who has gone through this, that it is not inevitable he will get symptoms, perhaps, if he is very careful to treat his body well. He can have a normal life but not a reckless one as many young people who think they are immortal at that age do.
Best of luck to your son!
It is so frustrating and difficult to get all the answers to the questions we have, but I just wanted to give you perspective from someone who has had this without a diagnoses for most of my life. I am now 61.
I had the same kind of symptoms when I was 13. Bad pounding headaches, at the back of my head but also all over and especially after straining. Being in an environment like school portables, or mildewed cottages, damp woods where there was mold would also bring them on for me.
In grade nine I would almost have to crawl home from school they were so excruciating and in retrospect I am sure it was the portables that did it. I had huge concentration problems all that year and as a result had to repeat it. Interestingly, when I lost 35 pounds in grade ten I felt much better in my ability to concentrate and went on to university.
Of course they didn't have MRI's back then but I knew for certain there was something wrong. I had some bad accidents after that, falling on concrete from the roof of a barn, whiplash and more. I observed that I was different, that life was not as easy for me as other people. I would burn out quickly and could not be around chemicals when others had no problem. Had to give up my darkroom career and wanted to be a hairdresser but I knew the chemicals would get to me.
But what I want to say is, there were many years when I was much less symptomatic and I pushed out two babies without medication at all, natural births at home. If I had known I had a chiari, I might have been too afraid to give birth. As far as I know it didn't make things worse. I managed to find the energy to work and raise them, with periods of having to take time off. I am glad I didn't have an epidural now, because I've read that spinals can pull the tonsils down further, if not done right.
It has really only caught up with me to the point that I can't work anymore in the last decade. But perhaps if I had known, I would have been kinder to my body. That would have been the main difference. So if I had a child with Chiari but no symptoms, I would make sure they understood everything about it. I would tell them they need to stay very healthy. Maintain a healthy weight, avoid chemicals and junky food, cigarette smoke, drugs, stay fit but be careful with the neck.
Tell him to try to pay attention to see if he can figure out what triggers the headaches. Sometimes it can be food sensitivities, environmental or stress. You can get pressure from too much water building up in your brain, or from inflammation from autoimmune problems due to sensitivities. I have gone on a low-carb diet recently because it makes you lose a lot of water as well as weight, and I have had a CSF blockage. My head feels a lot clearer. So if he became symptomatic, he could try things like that.
I would say, and I am NOT an expert just someone who has gone through this, that it is not inevitable he will get symptoms, perhaps, if he is very careful to treat his body well. He can have a normal life but not a reckless one as many young people who think they are immortal at that age do.
Best of luck to your son!
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