I just recurved my husband’s records from Duke, it includes notes from the referring neurologist, who was my son’s neurologist as well.
His neurologist dropped him as a patient because I refused to keep him on his Keppra, it was making it way worse for him. When I asked about him monitoring his Malformation, he said he didn’t have any symptoms. I was so offended that he made this decision for my 18 month old. His balance is awful, he has seizures, he is so ill now, he bangs his head on the floor (which I’m told it’s a sign of headaches), and he leans forward when he walks or runs. He will bend his arms and pull them back, almost like when you impersonate a chicken, then he will lean forward a bit with his neck and run or walk.
This neurologist told me I was nuts, not only at his appointment, but the appointment my daughter’s appointment as well.
Meanwhile, I receive this email yesterday from Duke. It has my husband’s medical charts from 93-96. These charts explained my son’s symptoms too a T! I couldn’t believe it. I was so relieved to not feel crazy anymore. The neurologist even wrote in my husband’s chart that he complained of neck pain and dizziness, but he must admit his exam was completely normal. Then 3 months later he’s having decompression surgery. Now he’s telling me my son is fine too! Anyway, we have our first appointment at Duke Medical University Friday. I’m terrified but ready for a legit plan!
So, my husband (who was 4 and could tell you things) had
Neck pain
Headaches
Broad gait
Balance issues
Seizures
Swallowing problems
Irritability
Forehead abrasion
Abnormally shaped head
My son has
Headaches
Unusual gait
Balance issues
Seizures
Some gagging issues
Incredibly irritable
Puffy fluid under his forehead
Fluid (what looks like) at bottom of skull
Pulls at ears a lot
Will put his ear to his shoulder a lot.
So this is coming from my experience with “Nuerologyst” who also told me I was “nuts”.I spent a good 3 years seeing a nuerologyst whom I believe did not want to admit that he had very little experience with chiari and that just maybe his patients might know a thing or two.I was put on migran,endep,eplim 500mg,sandoz and osteo Panadol 2 tablets 3x a day.Im now 23 im not sure how the effects of chiari differ from female to male.But I feel it is important to tell you this especially because your little one in my opioin probably has chiari.I was 5 years old when my headaches started my mum couldn’t work out why a 5 year old would come home every day from school with headaches and put herself to bed my mum would tell the teachers to make sure I was drinking plenty of water.This did nothing.It continued up until the 3rd grade headaches,bedwetting,0 concentration etc so I was then refered to a pedeatritician for eegs and cts they found nothing so they put it down to “absence epilepsy”.and sure enough they "medicated’ me.I was on eplim for about 8 years and against my doctors orders I stopped taking my medication because well I hated taking it and I belived it made me feel depressed sort of dulled my senses.It wasn’t until about a year later I started showing symptoms of chiari so we ended up doing the whole mri,eeg thing again and they found no lesions.But chiari.Long story so sorry but what im trying to say is.These nuerologyst can be very! dismissive and in the end we had to get pushy with ours the nuerologyst said "im sorry I cant help you take your medication and go home’’.So my mum being the wonderful angel she is said to him ‘‘well please refer us to someone who can! help’’.There is absolutely! no harm in demanding that your childs health be taken seriously and getting a second opinion I had symptoms at 5 that no one picked up on till I was 23 and it was visible on mri.Good luck to you.Hope you get some answers!
I know he has it, his neurologist diagnosed him with it but refused to do anything for him. First he said he had no symptoms, then told me the procedure to fix it was complex and not worth it. We did get our referral, thank God. He goes Friday to see a neurosurgeon. It sucks that they didn’t take you seriously, I could only imagine how awful that was. My husband was 4 when he had his surgery but the same neurologist waited 3 years to refer him. These doctors are nuts.
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oh yeah they certainly can make a difficult situation all the more challenging.Thats great! news that they are finally doing something for your son.They will always say “no symptoms” but we can definetly feel those symptom.I was told that the 30 second spasms I was having was a "migrane’’ and was medicated for it and to no surprise the medication was not a “migrane”.Which is what I had been trying to tell them all along.I think patients know there bodies better than any doctor ever will.Good luck and if our son does get an op.It is sooooooooo worth it.I can actually belly laugh now and I have a much better quality of life.Even if Ii have to go back for another op one day it was defiantly worth it to laugh again.
We got our game plan, a scan every 3 months to see if as he grows if it will readjust. I was so relieved. We were going to come back in late August to do a spine scan and check in. Well, we went on vacation right after his appointment and he had to sleep in his play pin in my room. I found out that he quits breathing in his sleep. Now I have to go to a sleep study and come in ASAP for a spine scan to check for fluid. This could be a game changer, since his Dr said this is the main symptom that causes surgery. I’m praying we can still have old off on the surgery. I was told at his age, it’s harder because they blood vessels are so compact. I want to wait as long as possible, but i don’t want him to stop breathing one night and never wake up. I can’t imagine how they’d mask a 19 month old and him now pull it off.
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That must be terrifying.Even as an adult it was horrible to go through but for a little one I would say it would be so daunting.And as a mother you would feel so helpless not knowing which way to turn.Its great that they are monitoring his progress.If it helps at all when Ii had the choking episodes and would stop breathing in my sleep it helped to put a few bricks under one end of my bed legs to sorta of angle my bed up a bit.And and having an elbow pillow to.Its very scary to see that would happen regularly I permamntly slept next to a bucket and a cup of water because it got that bad I would hurl in my sleep.Hopefully it hasn’t gone to his spine.I do hope you are ok.Its not easy seing your children suffer.
It’s been awful, I haven’t slept since I heard him. I was told by his neurologist that this will probably make his neurosurgeon want to operate sooner. They finally told me that he’s epileptic too, and put him on Trileptal. It has some kind of scary side effects, but his neurosurgeon insisted that he be on medicine. We have his pulmonary appointment the 14th to get his sleep referral and go back to Duke July 5. I’m nervous, but I am ready to know if I can breathe easier.
I do believe there is a strong connection between chiari and epilepsy having absence epilepsy myself it seems to be occouring more.Isnt that such a conundrum its like picking the lessor of 2 eveils.You don’t take the medication and you suffer or you do take the medication and gain side effects that bandaide one problem and possibly create another 
.I was on eplim 500mg for years and I believe it dulled my senses and made me feel very numb.Good luck with everything your doing a great!!! job.I hope you get some shut eye soon and your little one finds some sort of relief whether it temporary or semi permant.
His doctor explained to us that you see a lot of epilepsy in Chiari patients. He also told me with his brain developing, he needs the medicine because they can interfere with his development. We’ve had a couple of really good days, it’s been almost nerve wrecking waiting for the crash lol. But I’m thankful that he’s been so happy! Thank you!
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