Aa
11 yr old with Chiari.
So I have a Question or few. My daughter is 11, she got diagnosed with chiari 1 with herniation of 14.75mm July 2012. She had surgery August 2013. They were going to do duraplasty with decompression, but opted out right before wheeling her to surgery. She also had c2-c3 fused. She spent 5 days at children's hospital. Since then we have been sent to many specialists by her neurosurgeon. She has been complaining of blurred vision and pain behind the eyes. Has major insomnia issues. Has been holding the base of her head. Crying it hurts when she cries hard. Complains now of mid and low back pain.
Her neurosurgeon sent her to neurology to rule out headaches. We have seen optometry to rule out eye issues. Sleep study test is issued to see if she has apnea due to chiari or separate or apnea at all. 9 mg melatonin each night and still can't really sleep well. So far neurologist said no headaches. She feels it's a compression issue secondary to unresolved chiari. Optometry says eyes are great. Optic nerve scans as great but when they dilated her eyes it showed some optic nerve cupping. He feels it's a compression issue. Neurosurgeon disagrees.
We requested cine MRI with neurologist. When she asked neurosurgeon he declined and said he wanted to see us again before further tests etc. it's been over a year and she still has restrictions. Mostly because fusion has not healed and because certain symptoms still arise. Like no contact sports etc.
Last MRI shows still no shift in her brain. That was 6 months post op. So it hasn't decided to occupy its new space yet. Please someone give me some input and advice. We go back to neurosurgeon next week to discuss what's next and what other docs said. November we see neuro-ophthalmology. She was due this dec for another CT and MRI. Neurosurgeon thinks all symptoms are separate and that he fixed her. All other docs think it's secondary to her chiari. Should her brain have shifted to occupy the new space. Do you think if they would have done the duraplasty she would be better than she is?
Thank you so much.
Her neurosurgeon sent her to neurology to rule out headaches. We have seen optometry to rule out eye issues. Sleep study test is issued to see if she has apnea due to chiari or separate or apnea at all. 9 mg melatonin each night and still can't really sleep well. So far neurologist said no headaches. She feels it's a compression issue secondary to unresolved chiari. Optometry says eyes are great. Optic nerve scans as great but when they dilated her eyes it showed some optic nerve cupping. He feels it's a compression issue. Neurosurgeon disagrees.
We requested cine MRI with neurologist. When she asked neurosurgeon he declined and said he wanted to see us again before further tests etc. it's been over a year and she still has restrictions. Mostly because fusion has not healed and because certain symptoms still arise. Like no contact sports etc.
Last MRI shows still no shift in her brain. That was 6 months post op. So it hasn't decided to occupy its new space yet. Please someone give me some input and advice. We go back to neurosurgeon next week to discuss what's next and what other docs said. November we see neuro-ophthalmology. She was due this dec for another CT and MRI. Neurosurgeon thinks all symptoms are separate and that he fixed her. All other docs think it's secondary to her chiari. Should her brain have shifted to occupy the new space. Do you think if they would have done the duraplasty she would be better than she is?
Thank you so much.
Good sounds like he has pulled his head out and listening. I am glad something is getting done.
We got sent to the neurosurgeon at children's by her pediatrician. We took her to her pediatrician because of how much she was complaining about neck pain and holding the base of her skull crying uncontrollably. Her pediatrician took X-rays and found instability in her neck. They diagnosed it as retrolisthesis and anthrolisthesis. Then the NS took an MRI to look further into the complaints and found the chiari. Her brain was protruded by 14.75mm on her MRI. So she had c2 and c3 fused while they did the decompression surgery. Her chiari was giving her loss of feeling in her extremities along with severe pain when crying, playing, jumping etc. those symptoms along with cervical instability, lead them to do a brain and spine MRI.
How did you get on with NS? I have similar pain at back of head as your daughter, build up of cf fluid but normal pressure on lp. No idea what's going on. I shall pray for your family and a speedy recovery for your daughter!
We went in to neurosurgeon yesterday. He wasn't a prick for once. He actually came in with other doctors who asked questions and evaluated my daughter themselves. So, where we stand right now is. We have to continue next month to see the neuro ophthalmologist. Then her sleep study in Dec after those we do our MRI and CT and we will see where all that leads us. He is discussing a possibility of further surgery next year. He said some of her symptoms aren't classic chiari symptoms, but he won't rule them out as possibilities because all docs are ruling out separate issues. There are some symptoms that are definitely associated without a doubt to her chiari. I hope wears headed in the right direction. Any comments are greatly appreciated. Oh, we got released after 15 months from PT woohoo. Still has activity restrictions until all tests done. Plus June CT revealed fusion still wasn't healed. So until next MRI and CT that's where we stand.
Good luck to you - I have two NS appts on Thursday too - son and partner. Hope you get some answers!
Her neurologists ruled out headaches. Her NS sent us there ex he felt she was having headaches. The neurologists said her medical opinion is secondary to Chiari. So did her optometrist. We go to the NS this Thursday. We will see what he says. That will base my dropping him or not. We are in Seattle wa. We go to a Chiari specialist Dr Browd at Seattle children's. Now that all the other docs have said nothing's wrong and they all feel it's associated to Chiari I'm curious to what he will say this time around. I will keep you all posted. Thank you ALL for your advice and opinions.
Yes I would tell Doc bye bye. Like Selma said there is no cure. There is things to be done to help with this. If there was no decompression done and several doctors are tell you that they feel is is being compressed some how. This doc has a bad complex. So please take your daughter to a Chairi specialist. Them headaches with the eyes does hurt so please take her to a specialist.
Hi,
I'm so sorry your daughter is going through this! I agree with Selma, for my two cents. If he is saying she is "fixed" or "cured", I'd get another opinion. I also journaled about my son's chiari journey - feel free to read, we ran into similar thing with NS when symptoms recurred six months after surgery - went to another specialist who is MUCH better. Where are you from? There is also list here of some specialists that people have worked with for this, if it helps any. Good luck, keep us posted!
I'm so sorry your daughter is going through this! I agree with Selma, for my two cents. If he is saying she is "fixed" or "cured", I'd get another opinion. I also journaled about my son's chiari journey - feel free to read, we ran into similar thing with NS when symptoms recurred six months after surgery - went to another specialist who is MUCH better. Where are you from? There is also list here of some specialists that people have worked with for this, if it helps any. Good luck, keep us posted!
COMMUNITY LEADER
If he thinks she is cured I wouldn't bother to go back, as there is no cure only treatment to restore CSF flow and slow progression.....many times a person can go many yrs with no more symptoms or issues, and many times that is not the case.....so I feel u need a diff Dr and cut the cord with this one...JMHO.
When tonsils are cauterized they do not retract completely....I know I still have a herniation and may continue to have symptoms as a result....but nothing like b4 as my CSF flow was restored....
Yes they cautatized them. Shaved off some of C1. I will see what her neurosurgeon says Thursday. That will depict if we stay with him or not. He just isn't taking anything seriously. He thinks she is cured. :(
COMMUNITY LEADER
Did they cauterize her tonsils?...As I was told many times the tonsils do not retract completely even with the practice of cauterizing......
AS long as there is room for CSF to flow it should be ok....
U may want to get an opinion of another Chiari specialist.....to see what they feel may be going on.
I wish I had answers, but if this was myself with these issues I think I would try a diff Dr....
Hi Selma,
Thank you for your response. She had a regular CT following surgery. They did her MRI 6 months post op. They said it all looks fine. No syrinx, no tethered cord etc. Only thing they said, was by looking at her MRI pre surgery and post that her brain hasn't shifted. It can't lift due to gravity. But it should have moved and stretched out to occupy its new space it made, therefore it would lift because it shifts. Her brain is still sitting at the same place 6 months post op as it was before they decompressed her. Neurosurgeon made comment if possible repeat surgery to do dura 18-24 months later if there's still issues. Every issue we explain he thinks is separate and sends us to different specialist. So far each doc has said there's nothing wrong with particular body parts causing the issue. They all think it's related to Chiari and that there's some type of compression issue remaining in her brain. That's when her neurologists wanted a CINE MRI. But neurosurgeon declined it and wants us to go back to children's to talk about what's next. Main issues right now are blurred vision and her eyes hurt. When cryin hard it causes a lot of pain in base of skull. Dizziness occasionally and unexplained vomiting issues. Pain complaints mid back and lower back. She's been on activity restrictions since April 2012 and so far will be until at least Jan 2014. She's due for MRI and CT December of this year. Based on tests and symptoms depicts if they lift the restrictions. She still goes to PT 13 months
Post op.
Thank you for your response. She had a regular CT following surgery. They did her MRI 6 months post op. They said it all looks fine. No syrinx, no tethered cord etc. Only thing they said, was by looking at her MRI pre surgery and post that her brain hasn't shifted. It can't lift due to gravity. But it should have moved and stretched out to occupy its new space it made, therefore it would lift because it shifts. Her brain is still sitting at the same place 6 months post op as it was before they decompressed her. Neurosurgeon made comment if possible repeat surgery to do dura 18-24 months later if there's still issues. Every issue we explain he thinks is separate and sends us to different specialist. So far each doc has said there's nothing wrong with particular body parts causing the issue. They all think it's related to Chiari and that there's some type of compression issue remaining in her brain. That's when her neurologists wanted a CINE MRI. But neurosurgeon declined it and wants us to go back to children's to talk about what's next. Main issues right now are blurred vision and her eyes hurt. When cryin hard it causes a lot of pain in base of skull. Dizziness occasionally and unexplained vomiting issues. Pain complaints mid back and lower back. She's been on activity restrictions since April 2012 and so far will be until at least Jan 2014. She's due for MRI and CT December of this year. Based on tests and symptoms depicts if they lift the restrictions. She still goes to PT 13 months
Post op.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Many times when the decompression surgery is done to help minimize a CSF leak and not opening the dura, not enuff room is made and this can cause the obstruction to CSF to continue.
I am confused, did she not have a MRI post op?
Did they rule out a syrinx, tethered cord, and ehlers-danlos b4 surgery?
Have an Answer?
You are reading content posted in the Chiari Malformation Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
