How to help my son with the constant nausea and headaches

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My son who's now 18 has been suffering for years with headaches, nausea, poor sleep, exhaustion, muscles aches etc. In July had an mri which showed up a chiari formation 1. We are now waiting to see a neurosurgeon.. Another 3months!!

My question is, can anyone give some advice on anti nausea and anything to help with the headaches for the time being? My son wants to pull out of college as he says he just can't handle feeling so crap all the time. He's in despair that even having the decompression op might not make him 'normal'. Obviously I'd like him to go on with college and not just be at home all day sleeping in and in front of the computer! So if there's anything anyone can suggest to help with these symptoms to keep him going, I would be grateful. Has anyone tried cbd oil? Or craniosacral therapy? BTW, hes very anti anything alternative, and calls me an old hippy when I suggest a thing like that. Thanks

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  • Posted

    Hello,

    ?I had a long spell as well with all of his symptoms...he needs to start immunotherapy immediately. This is when u heal ur body with vitamins and helps to boost ur immune system to make you feel better. He also needs a full blood work up to see if he has any vitamin deficiencies because most Chiari patients usually  do. I have added B3 B7 & B12 regimens to improve my health and I feel 100% better. We will always have issues but they will be minimal. I have Decompression surgery 1/17/17 and my life is back to normal. 

    ?Hope this helps

    Leneta

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    • Posted

      Thanks for your advice about viamins, Leneta.  I'm really hoping my son can have the surgery and that it helps him.  He's feeling pretty despairing at the moment.

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  • Posted

    My daughter uses cbd oil it helps as she has epilepsy through chiari malformation she suffers also with headaches an nausea she was diagnosed 3 years ago she 21 now and in her last year of uni she finds things difficult at times but if there anything out there that helps try it taking a regime of vitamins also helps her if decompression surgery can help my daughter it May be the next step but so far there saying the chiari an epilepsy are not connected but I don't know how can that be as she only started having seizure at the age of 19 very difficult to no what to do for the best but taking something like cbd oil might help

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  • Posted

    Hi, I just wanted to comment that sometimes all you want to do is bury your head and go to bed but keeping movement going is the best thing for me. When i am sitting all day at work the symptoms are much worse so walking helps. I have physio every 2 weeks -I'd have it weekly I'd it for the cost. I also have CST which is a little alternative and smtg I found strange to begin with but I think it helps with the head pressure. Nausea is crap bit try to eat little and often even if you dont want to....it helps even so you're not taking tablets on an empty stomach.

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  • Posted

    Chiari is the downward movement of the hindbrain into the junction where the brain and spinal column meet.  Five hour decompression surgery is what the neurosurgeon will recommend if he/she deems it necessary, because that is the current mindset in the US medical community for treatment.  This surgery, which I had, and know of many who also had is a bandaid...it does not get rid of the cause of the Chiari.  Four neurosurgeons (3 US and 1 in Spain) routinely perform 45 minute Filum Terminale Dissectum surgery.  I had this surgery after having no results from the decompression surgery.  You will have a 1-1/2 incision just above the intergluteal cleft (buttcrack), depending on which surgeon you use.  This surgery saved my life and got me out of the bed after 2-1/2 years.  Do your research on this surgery, along with research on the decompression surgery.  God Bless, Steve
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  • Posted

    The Tight Filum Terminal Dissectum, which is a form of tethered cord surgery, releases the downward pull of the hindbrain caused by the "tight" spinal cord, and thus releases the cause of the herniation.  So, yes the "pressure" is relieved because the CSF flow is restored, which leads to lessening headaches and nausea and numbness, and then hopefully their dismissal outright!.  Now that the CSF flow is improved you will also start to decompress the cranial nerves...they control breathing, sleeping, motor control, vision, hearing, taste, yawning, sneezing, etc.  The surgery is a 45 minute procedure that releases the filum terminal (end of spinal cord) from the coccyx, and thus is done OUTSIDE of the spinal canal.  Traditional tethered cord surgery is done INSIDE of the spinal canal and can be traumatic and dangerous and is a lengthy surgery.  The Tight Filum Terminal Dissectum surgery is about a 1-1/2" incision above the intergluteal cleft (butt crack) and is usually performed while one is sedated.  I had central apnea at the time so I was anesthetized, and I believe for children they also anesthesize.  For pain, I took Advil for about a week, whereas for the brain surgery I had pain no matter what I took for about a month.  Three US neurosurgeons (Heffez, F. Henderson, P. Bolognese) perform this surgery, and one in Dr. Royo Salvador in Spain.  Our church/friends set up a GoFund which helped, since this was out of network per our insurance company.  Waiting period in US was over a year, so we went to Spain, which from pretesting in US, then 12 days in Spain was still only about 6 weeks.  Got me out of bed after 2-1/2 years and now I am back to loving on my wife and children and serving others.  God Bless to you and your son, do your homework and ASK/SEEK/KNOCK.

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