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What can my 12-year-old daughter expect with 3 mm tonsillar hernation of the cerebellum?
Hi,
I am new to this forum. My 12-year-old daughter has spent the last month in severe pain with nausea, vomiting, headaches, neck pain, floaters, flashes of light, and a loud pounding noise in her left ear. She has been taken to ER to PCP to Neurologist for tests and back to the ER again. Finally she has found some relief with a Medrol dose pack and Topamax. The neurologist ordered an EEG which was abnormal, and an MRI and found a 3 mm tonsillar ectopia of the cerebellum. The neurologist did not seem to be concerned about it stating that 3 mm was no big deal, but my daughter has had severe symptoms. It started when we went to an amusement park and she rode some rollarcoasters. Right after a particular one she started complaining of severe headache and she was sick to her stomach. It never went away after that. She lost 7 pounds and had to have IV's for dehydration. Right now she is still experiencing the floaters, flashes of light, and the loud noise in her left ear, but no headaches and no vomiting. The neurologist says that it was migraines, but why would she still have the flashes of light and tinnitus in her left ear if she is not having a headache. She has bouts of coughing for no reason that lasts for days and then goes away even though she does not display other symptoms of illness. A mother's intutiion says it is Chiari Malformation, and believe me I would not want this for my daughter, but I see it all in front of me. What can she expect as a sufferer if this is truly what may be happening to her
Thank you for listening.
Jessie
I am new to this forum. My 12-year-old daughter has spent the last month in severe pain with nausea, vomiting, headaches, neck pain, floaters, flashes of light, and a loud pounding noise in her left ear. She has been taken to ER to PCP to Neurologist for tests and back to the ER again. Finally she has found some relief with a Medrol dose pack and Topamax. The neurologist ordered an EEG which was abnormal, and an MRI and found a 3 mm tonsillar ectopia of the cerebellum. The neurologist did not seem to be concerned about it stating that 3 mm was no big deal, but my daughter has had severe symptoms. It started when we went to an amusement park and she rode some rollarcoasters. Right after a particular one she started complaining of severe headache and she was sick to her stomach. It never went away after that. She lost 7 pounds and had to have IV's for dehydration. Right now she is still experiencing the floaters, flashes of light, and the loud noise in her left ear, but no headaches and no vomiting. The neurologist says that it was migraines, but why would she still have the flashes of light and tinnitus in her left ear if she is not having a headache. She has bouts of coughing for no reason that lasts for days and then goes away even though she does not display other symptoms of illness. A mother's intutiion says it is Chiari Malformation, and believe me I would not want this for my daughter, but I see it all in front of me. What can she expect as a sufferer if this is truly what may be happening to her
Thank you for listening.
Jessie
Jessie,
My daughter was also 12 when she started having symptoms of Chiari. It took 8 long months to get her properly diagnosed because her herniation was "only" 2.5mm-3mm! So, most doctors said it was just migraines.
Rachael had surgery in October of 2007. She was great for several months after, but then a chiro adjusted her (not solicited), and many of her symptoms have returned.
She is now 15 and has a caring bridge page if you'd like to read through our experiences, just let me know. I will be happy to answer any questions or help in any way that I can.
Blessings,
Rebecca
My daughter was also 12 when she started having symptoms of Chiari. It took 8 long months to get her properly diagnosed because her herniation was "only" 2.5mm-3mm! So, most doctors said it was just migraines.
Rachael had surgery in October of 2007. She was great for several months after, but then a chiro adjusted her (not solicited), and many of her symptoms have returned.
She is now 15 and has a caring bridge page if you'd like to read through our experiences, just let me know. I will be happy to answer any questions or help in any way that I can.
Blessings,
Rebecca
hi there! i hope all is going okay and some relief can be found soon (for everyone too!). I just wanted to comment about the roller coaster ride. It's so weird that you mention that cuz my symptoms started about 3 weeks after a really HORRIBLE wooden ride--that NEVER gave me trouble before. I had an immediate, intense headache when we got off of it, and i got knocked around so much--i seriously thought i broke a rib. We had to leave the park early cuz I felt weird and my head was hurting so bad. It just is so weird that it kinda happened to her--it just took my symtpoms a bit longer to start showing up after. But my vision is affected constantly, all day, every day now--for over 2 years---among a ton of other nasty symptoms. I find it strange she also has some weird visual issues.
Anyway, figured i'd hop on and share the similar story, don't know if it's when mine "started" but I have a strong feeling it was. Best wishes for her and ya'll!!
Anyway, figured i'd hop on and share the similar story, don't know if it's when mine "started" but I have a strong feeling it was. Best wishes for her and ya'll!!
i know how you daughter feels, i got diagnosed with chiari last year and my herniation was 4mm so the neurologist just brished it off and stuff but after that my symptoms got much much worse, i go to many many neurosurgeons, neurologists and any other kind od doctor you can think of! but right now me and my mom are looking into the surgery.
I wish your daughter the best.
~~Elle~~
I wish your daughter the best.
~~Elle~~
COMMUNITY LEADER
Hi...it is possible to have migraine HA's along with the pain from chiari...it can be quite diff to know the diff.
I pray the drs at CC are able to help ur DD. I loved roller coasters and I know I had adverse reactions to them, but never knew why...and would blame it on heat or what I ate....now I know y.
Please keep us posted.
"selma"
I pray the drs at CC are able to help ur DD. I loved roller coasters and I know I had adverse reactions to them, but never knew why...and would blame it on heat or what I ate....now I know y.
Please keep us posted.
"selma"
When my daughter was first diagnosed the neurologist brushed it off as not having anything to do with my daughter's dizziness and headaches. Her herniation is quite large. It is 1 cm. She said that she thought it was the onset of migraines. I left thinking this Chiari thing is nothing. Then I started to do research on it and found out it is something to really look into.I decided to look for a specialist and if they told me it was nothing to worry about then I would believe them. Well that was not the case. The first doctor told us she was definitely a candidate for surgery but that at this point it was no rush. She was able to a lot of things without too many problems.
I took her for a second opinion and he said the same thing but he did some major testing first.He also suggested a neurologist for an opinion from him. She was put on mild blood pressure medication but it really did not do anything for her. On our last visit her specialist said that the medication is not going to do anything for her if it is a Chiari headache and that she really does not have to take it anymore.
My Daughter is always tired and gets fatigued very easily. This has progressed in the last 6 months. She has also grown quite a bit in the last year so I am sure that has something to do with it but I know a lot of the fatigue is Chiari related.
I also wanted to mention that the neurologist the specialist sent us to does know about chiari and he said that if it was the Chiari causing her problems than her EEG would probably have come back abnormal. At the time she had the EEG everything came back normal. That is another reason we put off the surgery. You may want to mention to the Chiari specialist that her EEG came back abnormal.
Can you get a note from your family doctor for gym class until you find out what is really causing all her problems?
You are going to find that there are many doctors and medical professional who do not have a clue what CM is. You are going to have to explain it to them and most times spell it even.
Our pediatrician is very nice about the whole thing and he even admits that he is no expert on it but he was so good about helping us find some good doctors that did specialize in this field. I am very grateful to them. I was so surprised because yesterday morning his office called. They had just got the new report in from the specialist and they were just calling in to check up on Elise and make sure she was feeling OK. They asked what kind of paperwork I needed to take her for her MRI and that they were getting that together for us. I wonder what was in that report. they never called before but she was very sick this last time. They said to call them right away if she is not feeling well and they would see what they could do for her.
Almost all the people here on this board have been down the road you are taking now trying to find out what is causing the problem and most have been told the Chiari is nothing. We know different.
I hope your daughter has a better day today. We did have a suggestion at one time that if it is migraine headache that sometimes caffeine will help. Have you ever tried giving her anything with caffiene in it, like a cup of strong tea or something like that?
Just a suggestion that you may have already heard.
Take care,
Chadry
I took her for a second opinion and he said the same thing but he did some major testing first.He also suggested a neurologist for an opinion from him. She was put on mild blood pressure medication but it really did not do anything for her. On our last visit her specialist said that the medication is not going to do anything for her if it is a Chiari headache and that she really does not have to take it anymore.
My Daughter is always tired and gets fatigued very easily. This has progressed in the last 6 months. She has also grown quite a bit in the last year so I am sure that has something to do with it but I know a lot of the fatigue is Chiari related.
I also wanted to mention that the neurologist the specialist sent us to does know about chiari and he said that if it was the Chiari causing her problems than her EEG would probably have come back abnormal. At the time she had the EEG everything came back normal. That is another reason we put off the surgery. You may want to mention to the Chiari specialist that her EEG came back abnormal.
Can you get a note from your family doctor for gym class until you find out what is really causing all her problems?
You are going to find that there are many doctors and medical professional who do not have a clue what CM is. You are going to have to explain it to them and most times spell it even.
Our pediatrician is very nice about the whole thing and he even admits that he is no expert on it but he was so good about helping us find some good doctors that did specialize in this field. I am very grateful to them. I was so surprised because yesterday morning his office called. They had just got the new report in from the specialist and they were just calling in to check up on Elise and make sure she was feeling OK. They asked what kind of paperwork I needed to take her for her MRI and that they were getting that together for us. I wonder what was in that report. they never called before but she was very sick this last time. They said to call them right away if she is not feeling well and they would see what they could do for her.
Almost all the people here on this board have been down the road you are taking now trying to find out what is causing the problem and most have been told the Chiari is nothing. We know different.
I hope your daughter has a better day today. We did have a suggestion at one time that if it is migraine headache that sometimes caffeine will help. Have you ever tried giving her anything with caffiene in it, like a cup of strong tea or something like that?
Just a suggestion that you may have already heard.
Take care,
Chadry
Thank you so much for your post. She had gym for the first time today and she said the running made her get a headache. She has had it all day and then her neck started to hurt on the left side. She also complained of being extremely tired. As I told Selma they tapered her off the Medrol Dose Pack and have her on Topamax, and now some of the symptoms are returning such as the headache, neck pain, floaters, and circles of colors in her vision. She also has the pounding in her left ear. We see the neurologist again on Friday. I am going to get some restrictions for her for gym definetly. If the symptoms get back to where they were before the Medrol I am calling someone at Cleveland Clinic here in Ohio. I cannot believe that no one has heard of it around here. The neurologist seems to think it is migraines that are seperate from the herniation, but I am not so certain. I hope your daughter is doing well. Thank you for your concern and your post. I truly feel more comforted knowing that others are out there trying to help us here in the dark.
Thank you
Thank you
Selma,
She just had the MRI early last week. She had went on the roller coasters at the very end of July. We go to the same theme park every year without any problems, except this year. She got sick right away and stayed that way on and off. She has only had the MRI which found the herniation and an EEG which was abnormal. We see the neurologist again on Friday, but he seemed to brush it off last time and said he would just watch it. She was on a Medrol Dose pack that has now been tapered off and guess what, the headaches and neck pain started again just yesterday evening. She said today she had gym and her head started hurting while she was running. She seems really lethargic also, wanting to sleep ALOT. This has been going on since the beginning of August with the vomiting and the headaches. They have her on the Topamax at 25 mg but it has not helped her much. She was begging to take it early today because she was in so much pain trying to do Algebra Homework. She had circles of light today in different colors in her vision and still has the pounding in her head which gets severe and then lessens only to return. I am crossing my fingers that the vomiting does not return.
I thank you for your reply. It is so nice of you to take out so much time for others as I have seen you do on this site. The neurologist seems to think it is migraines seperate from the hernination, but the other symptoms besides the headache happen when the headache is not there. You begin to feel quite lost and no one around here has even heard of it. I guess we will see what the neurologist says and how her symptoms go, if they go back to full blown vomiting and headache I am calling a Chiari Specialist at Cleveland Clinic here in Ohio. It has gotten ridiculous for her.
Thank you for listening.
She just had the MRI early last week. She had went on the roller coasters at the very end of July. We go to the same theme park every year without any problems, except this year. She got sick right away and stayed that way on and off. She has only had the MRI which found the herniation and an EEG which was abnormal. We see the neurologist again on Friday, but he seemed to brush it off last time and said he would just watch it. She was on a Medrol Dose pack that has now been tapered off and guess what, the headaches and neck pain started again just yesterday evening. She said today she had gym and her head started hurting while she was running. She seems really lethargic also, wanting to sleep ALOT. This has been going on since the beginning of August with the vomiting and the headaches. They have her on the Topamax at 25 mg but it has not helped her much. She was begging to take it early today because she was in so much pain trying to do Algebra Homework. She had circles of light today in different colors in her vision and still has the pounding in her head which gets severe and then lessens only to return. I am crossing my fingers that the vomiting does not return.
I thank you for your reply. It is so nice of you to take out so much time for others as I have seen you do on this site. The neurologist seems to think it is migraines seperate from the hernination, but the other symptoms besides the headache happen when the headache is not there. You begin to feel quite lost and no one around here has even heard of it. I guess we will see what the neurologist says and how her symptoms go, if they go back to full blown vomiting and headache I am calling a Chiari Specialist at Cleveland Clinic here in Ohio. It has gotten ridiculous for her.
Thank you for listening.
COMMUNITY LEADER
Hi...I have to agree with chadry that u get her to a chiari dr and do let them know what has been going on, they will get her in sooner.
Has she had a CINE MRI to check her CSF to see if there is a blockage?
Does she have a syrinx or tethered cord/was she checked for these?
Roler coasters as much as I love them is a BIG NO NO for chiarians......it can trigger it to grow or bcome symptomatic.Have the MRI's been done after the ride?......how long since she had the MRI?
"selma"
Has she had a CINE MRI to check her CSF to see if there is a blockage?
Does she have a syrinx or tethered cord/was she checked for these?
Roler coasters as much as I love them is a BIG NO NO for chiarians......it can trigger it to grow or bcome symptomatic.Have the MRI's been done after the ride?......how long since she had the MRI?
"selma"
Maybe you can call the Chiari specialist and explain what they found and how she feels. They may suggest you bring in her as soon as possible. Has she had her csf checked?
I have high blood pressure and before I knew this I would get the pounding in my ear. Maybe it has something to do with her flow.
Yeah the pressure thing in her head is just the way my daughter explains it. Like it is going to explode.
I am not sure if school has started where you live but we have a few more weeks here.Since she has a medical condition that is really triggered by certain activities maybe you can bring in a doctors note for gym class. My daughter has the option to skip certain things like running and neck stretches. they make her dizzy.
She can sit out whenever she feels it necessary and they can not make her do anything.She always like gym class and she will participate whenever she can.
I know running really bothers her. I have gotten a few calls from the nurse to pick her up after she was done gym because she wanted to do what the others were doing and then she would get a headache.
I have also noticed that the weather gives her headaches too. She gets dizzy and does not feel good before we get a storm.There were a few days I just knew what was going to happen and I changed my plans just to stay home in case the school called to pick her up. And i was right those days. She started out OK but got sick within a few hours. She does not tolerate heat or hot showers very well. Two times she scared me really bad after a hot shower. I thought she was going to pass out.
I hope everything goes well this week and you get some answers and some relief for her.
Take care. Keep me posted.
Chadry
I have high blood pressure and before I knew this I would get the pounding in my ear. Maybe it has something to do with her flow.
Yeah the pressure thing in her head is just the way my daughter explains it. Like it is going to explode.
I am not sure if school has started where you live but we have a few more weeks here.Since she has a medical condition that is really triggered by certain activities maybe you can bring in a doctors note for gym class. My daughter has the option to skip certain things like running and neck stretches. they make her dizzy.
She can sit out whenever she feels it necessary and they can not make her do anything.She always like gym class and she will participate whenever she can.
I know running really bothers her. I have gotten a few calls from the nurse to pick her up after she was done gym because she wanted to do what the others were doing and then she would get a headache.
I have also noticed that the weather gives her headaches too. She gets dizzy and does not feel good before we get a storm.There were a few days I just knew what was going to happen and I changed my plans just to stay home in case the school called to pick her up. And i was right those days. She started out OK but got sick within a few hours. She does not tolerate heat or hot showers very well. Two times she scared me really bad after a hot shower. I thought she was going to pass out.
I hope everything goes well this week and you get some answers and some relief for her.
Take care. Keep me posted.
Chadry
Thank you so much for your kind words and advice. We live in Ohio and I have been researching the Cleveland Clinic. They are 4th in the United States for Neurology conditions and they deal with Chiari. I know what you mean about never seeing them so sick. Laura, my daughter, threw up for three weeks. She was GRAY!!! Normally I can get hydration into her when she has stomach flu, but this was just uncontrollable. She complains of severe headache in the back of her head and also behind her eyes, both are a pressure like headache that feels as though her head could explode. She says she has a constant floater that is in her left eye, and sees white flashes of light that blind her for about 20 seconds and then she can see again. She also has a sound in her ear that sounds like her heart beat, but it is so loud that it cannot be drowned out and it keeps her awake at night. She has been a roller coaster fan and has ridden everything she could get on. It is scary to know the things she has done and now the fact that this has changed. We are to see the neurologist again this week and he said he would follow the tonsillar ectopia. I feel at this point if her symptoms continue to worsen I will seek a Chiari Specialist. Her Medrol Dose pack was tapered down until yesterday and she took the last one. She is on her Topamax indefinitely. Today after running she said it made her head hurt really bad while she was running. It had not hurt hardly at all since the Medrol and Topamax was started. It is like a time bomb really. You just do not know what will happen next. You and your daughter have given me comfort, knowing that we are not alone in this and in our frustration. I appreciate your advice.
Thank you again,
Jessie
Thank you again,
Jessie
Maybe you should try and find a chiari specialist.Sometimes that is the only route to go. Most other doctors will brush it off as not being Chiari related only because they do not specialize in this field and honestly have no idea what they are dealing with.
What do her headaches feel like? My 13 year old daughter has this condition and she gets her headaches at the back of her head and they shoot up. Sometimes they are just a pressure feeling and sometimes there is the pressure and sharp shooting pains up to the top of her head. Her specialist said this is the classic Chiari headache.
We live in South Jersey and we go to an excellent doctor in Delaware. I am not sure where you live but we have post here that lists doctors that others have seen.
I just posted the other day myself because my daughter got so sick the other night. It was the worst I have ever seen her. She started to get numbness. This doctor took her right in the next day and we are getting a new set of MRI's done to see what is going on. That happened after we went to a Phillie's game and she got car sick on the way home. To tell you the truth I was very scared. I have never seen her that sick.
I hope you find out what is going on. It is so hard to watch your children become so sick and not know what to do for them to help them feel better.
If it is Chiari then the roller coaster probably brought it on. Since we found out she has this condition I will not let her go on those kinds of rides anymore. We went to the shore 2 weeks ago and I would not let her on the rides. She is not a ride person anyway so it did not make much of difference to her. It will be a lifestyle change I can tell you that. There are just some things that they should not do. Every person is different and she will start to know her limitations.
I cringe now when I think of the stuff she did before we found out what the problem was. If you don't know than what can you do.You just let them be kids and do what the other kids are doing. Not so with Chiari kids. When I think back now and know what I know it explains a lot of different things from baby on.
Best wishes to you and your family.
Chadry
What do her headaches feel like? My 13 year old daughter has this condition and she gets her headaches at the back of her head and they shoot up. Sometimes they are just a pressure feeling and sometimes there is the pressure and sharp shooting pains up to the top of her head. Her specialist said this is the classic Chiari headache.
We live in South Jersey and we go to an excellent doctor in Delaware. I am not sure where you live but we have post here that lists doctors that others have seen.
I just posted the other day myself because my daughter got so sick the other night. It was the worst I have ever seen her. She started to get numbness. This doctor took her right in the next day and we are getting a new set of MRI's done to see what is going on. That happened after we went to a Phillie's game and she got car sick on the way home. To tell you the truth I was very scared. I have never seen her that sick.
I hope you find out what is going on. It is so hard to watch your children become so sick and not know what to do for them to help them feel better.
If it is Chiari then the roller coaster probably brought it on. Since we found out she has this condition I will not let her go on those kinds of rides anymore. We went to the shore 2 weeks ago and I would not let her on the rides. She is not a ride person anyway so it did not make much of difference to her. It will be a lifestyle change I can tell you that. There are just some things that they should not do. Every person is different and she will start to know her limitations.
I cringe now when I think of the stuff she did before we found out what the problem was. If you don't know than what can you do.You just let them be kids and do what the other kids are doing. Not so with Chiari kids. When I think back now and know what I know it explains a lot of different things from baby on.
Best wishes to you and your family.
Chadry
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