Our 15 year old son was just diagnosed with Chiari Type I on July 17th. It has been hard for me and my wife to digest this news. The first night I couldn't sleep and I couldn't really eat for a few days but I am starting to get over the shock of the news.
His only symptom that we know of started 2 years ago when he started complaining about ringing in his ears. We took him to an ENT and finally an MRI was done. The ENT called my wife and said he didn't see anything on the MRI that would cause the tinnitus but that our son had a low cerebellum. He said we should see a neurologist but he was not at all alarming. He said a lot of people have it and don't even know it but only find out when they get an MRI for some other reason. So I wasn't very alarmed at first. In fact, the MRI report sat on my desk for a week and then I took a closer look at it and saw the words "Arnold Chiari TYPE I". The report said he had asymmetrical herniations. One is 4 mm and the other is 10 mm.
So far the only symptom our son has is the tinnitus. He seems otherwise fine and happy.
We haven't told him yet and are struggling with how to tell him. I would appreciate advice from any other parents on this forum on how to deal with this. He is a bit of a hypochondriac and he is not going to take this well. We want to try and minimize it if possible even though after all we have read we know it is not really something to take lightly.
Our next step is to meet with a neurologist. My wife found one in our town that takes our insurance. He is a surgeon and he also gave a talk on Chiari at some conference in Hawaii. We will probably try to have a consultation with him without our son present to get more information. We are hoping this will help us talk to our son about it after we are better informed ourselves. I know we will probably be getting an MRI of the upper spine to see if a Syrinx is present. Very worried about that.
I know there is no way of knowing but are some people able to make it through life without the surgery and only have minimal symptoms like tinnitus? That's what we are hoping and praying for. He looks so healthy and happy at the moment and he is certainly able to live with the tinnitus.
Thanks in advance for any feedback on our situation.
Sorry for your son's diagnosis. I'm 57 and haven't had surgery and I presented with symptoms when I was born. Of course, there were no MRI's back then, so they diagnosed it as something else, and it wasn't until I was in my 30's that I finally had an MRI and had an answer to many of my medical problems. My advice is to learn about chiari, but don't obsess over it. I've had lots of issues, but been fortunate that I can treat most of them with medications and it's all manageable. My neurologist and neurosurgeon have both said that until I start having having issues that I can't control by medicine, they'd rather me not have the surgery, and to be honest, it would take a lot for me to have the surgery after everything I've read about it. Good luck.
Steve, I’m sorry you and your wife have this to deal with. The good news is that your son, as far as I could tell, isn’t suffering. The tinnitus is definitely a symptom of Chiari, and if that’s all he’s experiencing than I don’t see why he would need surgery. Many people go a lifetime without pain or life changing symptoms. Unless he does have a syrinx then you guys may be ok to just wait and see. You can always take action in the future if there is a need, right? I’m glad you are seeing a surgeon- that’s important for ruling out dangers. I would have him tested for sleep apnea (a common and obviously dangerous tag a long condition to Chiari), vitamin D deficiency, magnesium deficiency, and B deficiencies. Other conditions common among chiarians are:
Tethered cord
Ehlers Danlos Syndrome- google Brighton criteria and Beighton criteria. EDS can cause cranio cervical instability.
Hi Steve! I am a mother of three and I am 45 years old and I was diagnosed last year following a car accident. As a parent I can only imagine how you were feeling to receive this news for the very first time however do not be alarmed. It is not necessarily a life-threatening situation however you definitely want to look at two things the first is a CINE MRI (a video MRI) to determine whether or not his CSF cerebral spinal fluid is flowing properly and is not being blocked. The other is an MRI to make sure there are no syrinx, which is a small pocket of spinal fluid which forms down the spinal canal area. As long as he has no blockage of his spinal fluid he should not be in any danger of developing a syrinx. The fact that he has no pain or side effects other than tinnitus then he’s doing pretty good. As a child my parents wondered what was wrong with me at times when I did get fatigue and lightheaded, then later in life I developed cardiac arrhythmias. I did not know the heart and brain both pump/beat at the same time. I lived a perfectly normal life most of my life until a recent car accident which caused some trauma to my neck and head. My Chiari is only on my right side and it is 5 mm. The size of the Chiari doesn’t necessarily matter the most important thing is to make sure his spinal fluid is flowing normally. Chiari is exactly what it says malformation it’s a (structural) birth defect but many of us can live perfectly fine. The most important thing is to keep his head safe at all times and avoid certain sports or jerking of his head. No chiro adjustments to his head or neck. Basically his head should be kept safe. The biggest problem that Chiarians have is inflammation. Keep him healthy, eating healthy foods, hydrated, exercise is important. There really isn’t any medication for this diagnosis however you may want to speak to your doctor. We usually recommend you see a neurosurgeon not a neurologist. A neurosurgeon who “specializes in Chiari” will give you the most and best information. A neurologist will typically just prescribe medication. I personally do not take any medication other than advil daily as needed. My case is still being reviewed by a few neurosurgeons. Although I have a blockage of my spinal fluid on the right side, I have not had surgery as of yet.
There’s a wonderful foundation called CSFinfo.org. I’m not sure what state you are in but they do have a list of doctors in there and resources and people to talk to. They are absolutely wonderful. We are here to give you the best support that we can. We are all families or actual Chiari patients and anything that we can do to help with regards to information please do not hesitate to ask. God bless you and feel free to email me if you wish to have my number. Don’t worry your son will be fine.
Jozy
Hi Steve , my daughter was also diagnosed at 15 and I also remember the shock. We had never heard of chiari before that day . She had many symptoms though, bad migraines missing 3 morning of school a week, ringing in ears, pain in her hips, knees, shoulders, neck, black outs, numbness in extremities. She went on a medication for her migraines which were her worst symptoms and it has helped a lot she manages her other symptoms with Tylenol and Advil all though we believe her hip, shoulder, knee issues now may be related to EDS which we now know can many times accommodate chiari. Your sons symptoms seem very mild at this point so I would be thankful and don’t panic at this point my daughter has not had surgery and lives a full life, hold a full time summer job , plays rep hockey ( as a goalie) referees hockey throughout the winter , but she is determined that chiari will not own her. A lot of people would say that she shouldn’t be doing all those things ( well the sports) with chiari , but she says she won’t let it win and as long as she feels like she can continue to do it she will. So I would stay positive for your son. Don’t let the condition (diagnoses)consume him if it’s not right now. Keep an eye on his symptoms read all you can so you know what to look out for, find a Dr ( neurosurgeon )that specializes in chiari the rest are all useless trust me from experience and many others . If you don’t think a drs right question him/her never take no for an answer and if you don’t like the answer find a different dr you are the only advocate for your son. ( sorry I’m a little down on Drs and the trust I use to have in them and believe we need to be our own advocates for our health , this condition is not very understood and can be very frustrating at time when it comes to the medical field) I hope it all works out for your son and these support groups are the best for question and answers by people who understand where you’re coming from. If you are lucky your son could stay asymptomatic for years with minimal issues to deal with , I’m 44 and my Chiari has just become symptomatic in the past 2 years to the point of having to see neurosurgeon, it’s different for all. Good luck and keep us posted.
first off, Welcome! I am 35 yrs old and i have not had the surgery. I don't really have the tinnitus too much, just every once in a while. My main problems are a sore back, a sore neck, and headaches whenever i stretch or even reach for anything. I just started seeing a neurosurgeon who is actually familiar with Chiari and he has assured me that i do not need the surgery. My symptoms (though they seem bad to me and my friends) are not bad enough for me to require surgery. We are managing it with medicines. Also, i use pain cream when needed. i do have problems with my ears though. It's not a ringing but a constant itchy feeling. all that was suggested (after every test on the ears, inner ears, and eustacian tubes showed everything normal) was t put a tiny bit of anti itch cream on my fingertip and rub it in around the openeing of the ear canal.
Now as for your son, that is a whole different story. I have always been anxious about my health. In fact, my biggest fear has always been that i would find out i have some disease or disorder that had no cure..... LOL and here i am. But, he is old enough that if you present him with a facts sheet of the info showing that it CAN be manageable and let him lead a normal life, it may be a little easier for him to take. Also i suggest you get a copy of Conquer Chiari: A Patient's Guide to The Chiari Malformation. It's one of the books recommended for newly diagnosed people. Plus, at his age i am sure he gets online a bit. Point him here and we can help answer any questions he may have. :-) Sorry your family has to go through this but everyone here has been through it so someone most likely has an answer for at least one question. Let us know how it goes!
I know it is a shock to the system when you get a diagnosis like this one, but Chiari type 1 is actaully found by accident in many people following an MRI scan for something else. Many people with this , are asymptomatic (producing or showing no symptoms). Many people only discover that they have this, following a trauma, car accident, a fall etc. which seem to trigger a whole set of symptoms that were never there previously. Our daughter was diagnosed at 19, previously no symptoms, but was involved in an accident at that just opened up a whole chain of events that to this day we are struggling to unravel.
If your son shows no other signs than tinnitus, then I would do what your own gut feeling is telling you for the moment. There are many ways to alleviate the tinnitus...work on that one first and deal with the Chiari separately. Ask the neurologist if there is a sryinx present and if there is , get the measurements of the sryinx and as there are no other symptoms at present, ask your neurologist to monitor it on a regular basis to ensure that it is not getting any bigger. I would also take note of the measurements myself so that you are armed with this information the next time a scan is performed.Make sure that you and your wife understand Chiari( This support page will provide everything you need to know about it,. I can never be grateful enough for the help and support that I have gotten from it)as you will find that after a short while you both will know more about it than many many doctors. If it is tinnitus and if this is a symptom of the Chiari and is the only symptom, I would consider many options before surgery would be one of them. As you will have seen , from this page, surgery is not always a fix. Our daughter(now 23, fiagnosed at 19 yrs old) had the surgery and apart from shrinking the syrinx,( which is still there 4 years later and still causing many problems)it reduced some of the severe spasms, she has had little improvement. For you and your wife, as I say, it is a shock, but my advice is to take your time in learning about Chiari. You and your wife know your son best and you will know when it is the right time to tell him about what the scans will show. If the only symptoms are tinnitus, then I would leave well enough alone for the time being. Please, please do not get too upset or worried about something that may or may not happen. Put your resources into learning about this and when you meet your neurologist you will be better informed than many of us were when we went for first visits!! Please let us know how you get on. Positive thoughts and prayers from Ireland.....Cáit
Thanks so much to everyone for your kind words, information, guidance, and support.
I feel so much better having reached out here. I slept better and ate a little more yesterday. I've been on a diet anyway so the not eating isn't really going to hurt me!
It's nice to know that some people are able to live and manage the symptoms without surgery. When you start googling on this condition it can get pretty depressing.
We are lucky to live in the north east and there are many specialists within driving distance. And the neurosurgeon we found in our town that takes our insurance gave a talk on Chiari so I feel pretty good about going to see him.
I am sorry to hear about your son's diagnosis. My family and I just spent the past two months on a roller coaster ride since finding out on May 19th that our soon to be 3 year old daughter had Chiara type 1 that happened to be 17mm. In February she started complaining of headaches about 3 to 4 times a week that involved her grasping the rear of her head. A couple of months later they started coming 3-4 times a day and it seemed like it was always while exerting herself with some sort of activity. Her pediatrician dismissed it at first but then we advocated for an MRI fearing for the worse. It is not like a 2 year to complain of headaches. On May 19th we went to Children's hospital in Boston for an MRI which revealed the Chairi. Due to her wanting to get help for her headaches and "wishing" them away, we thought that it was best to keep her informed during the whole process. The doctor at Children's gave us his professional opinion on what needs to happen from this point on and encouraged us to seek other opinions in which we did at two other Boston hospitals. A month later we decided to go with the operation at Children's. It was the toughest decision either one of us had to make. We were putting our newly turned 3 year old on the operating table for brain surgery. We almost didn't go through with it due to our fear of what could happen. There is so much stuff out there on the internet and it seems to be 75% bad and that can be scary. Five days before her operation we decided to go up to NH for a family trip. During this trip her condition get worse. Within a couple of minutes of being in the car she was screaming "I have to puke" at the top of her lungs like someone was stabbing her the whole ride but she never did. This continued on up to the surgery every time we got in the car. I have not doubt in my mind this had to do with her Chairi. This is what pushed me in favor to have this procedure done at Children's Hospital. The Surgery was June 24th.
It has now been 5 weeks and she had her follow up yesterday. I am very pleased to report that she has not had 1 headache since nor complained of puking while in the car. In fact I think this is the best she has ever felt she just didn't know any difference before this. She had been living her whole life like this and not being able to communicate as such due to her age.
I wanted to share this with you because I know exactly what you are going through and would like to share you with our doctor's name if you are looking for a doctor and not sure where to start. As you know, you are seeking advice for your son and not you which makes it even that much harder. I am not sure if am "allowed" to post his name on the forum so if you would like shoot me an email at ■■■■■■■■■■■■■■■■■■■■■■ and I will share his name with you since you mentioned that you live in the North East. I trust him 100% with my life and my families.
Gateric, so glad your little girl is doing well. It is just fine to share a doctors name, especially if you recommend them, just not ok to specifically name a doctor when speaking negatively about them :). Please share there are many parents looking for a Chiari doc!
Steve, I forgot to mention that I would not let your son know how concerned or upset you are, especially if he is as you say, a bit of a hypochondriac. My sister hnd cancer, and I took care of her during her treatment. I would read about all the side effects of her medications and watch for negative interactions, but she didn't want to know ahead of time what COULD happen. Sometimes, the power of suggestion is too powerful. The best attitude you can portray to your son is that you, your wife and the doctors have things under control, and then be mindful of his complaints and issues.
Hi Steve, our story sounds like yours. Mine son was diagnosed this past week and the only symptom he has is a very slight headache. The doctors decided to do an MRI anyway and he was found to have Chiari Type I, no Syrinx but tonsil herniation is 14mm. He is otherwise healthy as an ox and plays football, which is his favorite sport and has played since he was nine, basketball and baseball. Not sure what he is going to have to give up, probably football, but have not told him that yet. We sat him down and explained to him the best we could. We did not tell him all of the symptoms because my son, like yours, is a bit of a hypochrondriac as well, but at least we told him and explained the best we could. He took it quite well actually. We go to our neurosurgeon on April 7th to see what happens from here. I am not really looking at surgery (in my opinion), as what I have read so far, it really depends on the symptoms they are having. We had no idea and were totally shocked and scared as to what to expect. Not sure if to expect it to get worse, stay stable, needs surgery or not. All up in the air right now but so scary to even think about. Like you, I hope he does not develop any other symptoms because the small headaches he is having are not so frequent and certainly no where to the severe point, just kind of there and don't stay long at all. He is outside right now playing basketball and having a great time. I would hate to think he can't do the sports activities that bring him so much pleasure. Good luck to you and your son.
Grifmom, i understand your not wanting to tell him about possibly giving up a favorite sport. I had played roller derby for at least a year after being diagnosed. However, the pain in my back just didn't get better adn as other symptoms got worse, I was forced to stop. I couldnt' even help teach the new girls because my back was so bad. I would hate for your son to have to learn this the hard way. If youd ont' know how to tell him, ask his doctor. He may be able to break it to him easily. Possibly talk it over with his coach as well. Ask for the coach to meet you adn your son and go through it all with them. If the coach and his doctor feel it is best for him to stop, maybe he could still be a waterboy or something? That way he could still be out there with the team. I would rather be able to walk with pain the rest of my life if it came to that and not being paralyzed because of an accident in sports. Football IS the best choise for him to drop as there is a lot of hitting on and near the back, shoulders, and neck. Best of luck to you! If it will help, print out a list of things your son's coaches should know about Chiari and the possibilities that could arise should he have an accident. It really helps to put things into perspective. Anyone in here can help you with a list of symptoms and there are many sites where you can get the information as well. I woudl start with www.asap.org and csfinfo.org
I hope you are managing o.k. after getting your son's diagnosis. It's been about 10 months since we got our diagnosis so I thought I would post a follow up on how things have been going.
Our son still only has tinnitus. That is his only symptom. Other than that he is fine.
The Neurosurgeon that we consulted with looked at his MRI and said that in his opinion he would not even classify our son as a true case of Chiari. That was a comforting opinion to hear. This is a surgeon from a teaching hospital in NYC who specializes in Chiari and gives talks on it so I have some confidence in his opinion. At the same time I realize that this in an unpredictable thing and that it can change over time.
We have definitely calmed down a lot since first hearing the news. We still have not told our son about it. When the time is right we will have a discussion with him but maybe ignorance is bliss at this point.
I will keep you and all the other parents of children with Chiari in my prayers as well as all the members of this forum. It is so nice to have this place to come to and get support.
Steve that is such awesome news, and we are hoping for the same type of report from our neurologist. We have sat our son down from day I and told him about what was going on and he took it quite well. Today we told him he may not be able to play football again, as he is passionate about that sport, but he is OK with it for now, until he hear it from the neurosurgeon. He has taken the news pretty well, his dad on the other hand, not so well. He has a really hard time talking about it. I am so grateful that your son is doing so well and that they would not classify it as a true case of Chiari, GREAT NEWS. I hope he continues to do well!!! Thanks so much for the update, it makes me feel so good for you and your family, and gives me and my family hope that maybe with him just having a very slight headache and no other symptoms at all, that we too can be so fortunate.
Steve said:
Hi Grifmom,
I hope you are managing o.k. after getting your son's diagnosis. It's been about 10 months since we got our diagnosis so I thought I would post a follow up on how things have been going.
Our son still only has tinnitus. That is his only symptom. Other than that he is fine.
The Neurosurgeon that we consulted with looked at his MRI and said that in his opinion he would not even classify our son as a true case of Chiari. That was a comforting opinion to hear. This is a surgeon from a teaching hospital in NYC who specializes in Chiari and gives talks on it so I have some confidence in his opinion. At the same time I realize that this in an unpredictable thing and that it can change over time.
We have definitely calmed down a lot since first hearing the news. We still have not told our son about it. When the time is right we will have a discussion with him but maybe ignorance is bliss at this point.
I will keep you and all the other parents of children with Chiari in my prayers as well as all the members of this forum. It is so nice to have this place to come to and get support.