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My 12yr old son was recently diagnosed with Arnold Chiari Malformation

Hi my 12yr old son was recently diagnosed with Arnold Chiari Malformation ... He has been experiencing painful and Intense headaches for almost 3 weeks now. The headaches are located in the front of his forehead, and are a pressure like pain. We have tried every over the counter med and been give several prescriptions to try as well. NO relief as of yet. This has become a problem as it is affecting school playing and other things he enjoys doing. Was sent to a pedi neurosurgeon and was told the headaches are not related to his condition and that for now the condition is something we will monitor through routine MRI s due to the size (.7mm) I believe is what it was. Can anyone please tell me if they know if the headache symptoms can be related again they are in the front of his forehead. We have also checked to see if it was other things such as sinusitus and such??? Any advise is so helpful! Thank you!!
Asked On : Sat, 5 Feb 2011
Answers:  5 Views:  509
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  User's Response
Hi Mother of 12 yr old. I also have Chiari Malformation with severe headaches. I am sure these are because of the Chiari Malformation. I have had migraines since I can remember (since at least age 14.) I am now 48 and just found out (Dec of 09) that I have Chiari Malformation. Like your 12 year old, no medication has helped with this pain. After being in the Hospital for over a week (being given strong narcotics) nothing worked for pain. When I was released I was given a prescription for Topomax. This is a non-narcotic, anti seizure medication. Even though I was not having seizures that they knew of, it is prescribed for other reasons. This medication did help with the migrains and headaches. They 1st tried to prescribe a heavy dose which I could not handle. It makes you dizzy, lightheaded etc.. I then went down to 1/2 of a 25 mg pill a day. This was all I could handle. It took about 2 weeks to build up in my system but it really did help. I think this would be a perfect dose for your child but of course you would need to check with your Nurologist as they are the ones to prescribe it after all. I noticed you said Neuro Surgeon? I would suggest for you to also see a Neurologist. Good luck and don't hesitate to ask me more questions.. 48 yr old in Central Florida.
Answered: Wed, 15 Jun 2011
  Anonymous's Response
Has his Intracranial pressure, or ICP, been checked? I also have a chiari malformation, but along with the chiari I have Intracranial Hypertension (also called Puesdotumor Cerbri) which means the pressure of the cerbrospinal fluid is to high, or in other words too much spinal fluid is being produced. It is diagnosed with a spinal tap (not as bad as it sounds) and often occurs with chiari for unproven reasons. It is managed with medication and an increase in ICP causes me to get a very bad headache in my forehead and causes a ringing sound in my ears at random times.
Answered: Mon, 2 May 2011
Orthopaedic Surgeon Dr. Aashish Raghu's  Response
Welcome to Healthcare Magic
In Arnold Chiari malformation there is a disruption in the normal flow of the cerebrospinal fluid which causes a large cyst of this fluid in the back of the head. This can have pressure effects and continue buildup of fluid in the head which can cause headaches. But since he does not have any visual disturbances and and not vomiting the headaches are probably not due to increased CSF. The headache described could be related to the high pressure though as it cannot be completely excluded. It would be best to get the Neurosurgeon on this and discuss various treatment options. In most cases a surgery is done to relieve the block in the neck and create a shunt for the free flow of CSF and prevent headaches. A spinal tap ill not cause any harm if done by a qualified Neurosurgeon as it is part of the management as well.
Answered: Tue, 13 Sep 2011
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General & Family Physician Dr. Jitender Chauhan's  Response
Hello, welcome to Healthcaremagic. Arnold Chiari malformation consists of malformation of brain resluting in hydrochepalus. It can lead to headache, muscle fatigue, nausea, dizziness, impaired coordination. Even though headache is part of syndrome as you said the doctors have ruled that out. It is not possible to comment about origin of headache without looking at the MRI reports. You should provide me with the MRI report for me to comment about it further. Sinusitis can be a cause of severe headaches you must consult and ENT specialist for proper evaluation. Wish your child good health.
Answered: Fri, 30 Sep 2011
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General & Family Physician Dr. Prahlad S. Patki's  Response
Arnold–Chiari malformation, or often simply Chiari malformation, is a malformation of the brain. It consists of a downward displacement of the cerebellar tonsils through the foramen magnum (the opening at the base of the skull), sometimes causing non-communicating hydrocephalus as a result of obstruction of cerebrospinal fluid (CSF) outflow. The cerebrospinal fluid outflow is caused by phase difference in outflow and influx of blood in the vasculature of the brain. It can cause headaches, fatigue, muscle weakness in the head and face, difficulty swallowing, dizziness, nausea, impaired coordination, and, in severe cases, paralysis.
Headache in such situation could be due to sinusitis too, this will respond to antibiotics and analgesics. Your doctor can give a course of antibiotics and see if he gets relief.
All the best .
Answered: Tue, 13 Sep 2011
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