My son Brian had decompression surgery at age 8. Now he is 12yo & found out he is 23mm herniated & obex of brain is herniated?? Decreased CSF in brain. Waiting for spinal MRI in 2 weeks. Anyone been thru a 2nd decompression with similar- he is dizzy, ringing in ears, severe head neck pain when lying on stomach, nausea on/off. If you saw him he looks great! Then symptoms strike out of nowhere. I am so stressed out & feel sick inside. I cry driving to work, but manage to hold it together at home. Trying so hard to be strong for my son. It’s just surreal! I thought this nightmare was over. It’s like we’re back to square one. He had migraines for last 3 1/2 yrs after surgery. Manageable. Why? Why? Why does this have to be happening again??? I am so stuck on this thought. Everyday is so hard:(
I'm sorry to hear of Brian's ongoing issues.
Frustratingly, if you look through the posts on this(and similar) sites, you'll see recurrent symptoms are not uncommon.
My only suggestion is that you make sure the MD doing the work-up knows Brian's symptoms and what you describe.
Specifically, do they know there is a positional nature to his symptoms(perhaps they would want to do flexion/extension images to better assess stability)?
Do they know his history(do they think it is worthwhile getting a cine study to assess CSF flow)?
Do they know his symptoms frequency(every 6 months may warrant observation, daily may warrant aggressive medical/surgical intervention)?
Are they doing an entire spine MRI(many stop at cervical or thoracic spine MRI to look for a syrinx but lumbar MRI is important in this setting to rule out tethered cord)?
I would caution you about getting fixated on the degree of cerebellar tonsillar ectopia. While we often look for changes in the millimeters of herniation in the adult world, stability in the location of the cerebellar tonsils can be read as a numerically increased herniation(just as measuring his fingers or toes will give you a larger number now compared to when he was 8 years old) in pediatrics. Make sure someone is directly comparing the films, not just the readings(meaning, ideally, the images are done at the same location).
Finally, check this web site for MDs comfortable with Chiari and check the American Board of Pediatric Neurological Surgery http://www.abpns.org to confirm additional pediatric neurosurgical board certification.
Hi. Thank you so much for your response! I really appreciate it! I did get the order for the cineflow MRI of his entire spine. The neurologist has been a nightmare to deal with. He only wanted to order the cervical spine- said “not important to do entire spine because treatment will be the same. He needs a decompression.” Yes. I went crazy… If my son. Is having brain surgery again we are getting a full accurate assessment… I will be seeking a new neurologist after this is all settled. I had to convince him to order the MRI of his brain to begin with. He kept insisting his problem was ENT related. We spent 9 months being batted back & forth between ENT doc & neurologist. Never once did he think that ringing in his ears could be a return of his Chiari. He was very sarcastic in reacting to my concerns- but now he has been calling to check on my son. Now he is so concerned? So hard to take. He had been seeing my son every 6 months for last 3 years. Really didn’t think it was unreasonable to get an MRI knowing history & new onset of symptoms?? Sorry to vent.
The neurosurgeon told us when Brian was 8 he also has a retroflexed odontoid bone. Could that be the reason he had a return of symptoms along with a big growth spurt? He also had a cervical syrinx gone after the 1st surgery. I can only pray this will turn out okay. At 8yo he got sick very fast- began with a massive headache, drop attacks & 2 months later was having surgery. … Now this is so different- complaints of severe dizziness, ringing in the ears & his ears actually turn bright red- no one can explain this-- & headaches come & go during the day. He lays down with ice pack to neck & am thankful Motrin helps his headache. He continues om topamax. Neurologist says this can’t be medically managed… I hopeful to go back to our neurosurgeon & get a couple more opinions before we make a decision. It’s just so hard to keep a 12yo down. He was working out s lot & neurologist told me has to stop all sit-ups, weights etc… Thank you again for your response. I am hopeful we will get this all figured out.
Sounds like you are going down the right pathway!
Thanks! Very helpful to have your feedback:)