My 13 year old son was diagnosed with Chiari Malformation Type I approx 7mm. There is a downward displacement and pointing of the tonsils. All the reports have been sent to a neurosurgeon. They said they will get back to me after they reviewed in about 48 hours. My son has been having headaches for a year (almost daily). They have recently turned into migraine like headaches with blurred vision. he has also had some episodes of behavioral change. I need some advice and guidance:
1. Is 7mm a lot?
2. He also has a left temporal arachnoid cyst are these related.
3. How long does it usually take to get an appointment with a neurosurgeon? Should he be seen sooner than later.
I can't answer all your questions, but I think that it is not so much the size of your son's herniation, as it is his symptoms. My 8 year old son had a 22mm herniation and his only symptom was headaches (more accurately severe short-lived pain) at the top of his head. However, a cine mri showed that he had limited flow. It is possible that your son's migraines are a separate issue from his Chairi I; your neurologist or neurosurgeon should be able to help you figure out the cause. As far as a neurosurgeon appointment, the first one we saw, we were able to get an appointment almost immediately after his diagnosis by a neurologist. Actually, I think the longest wait time we experienced was two weeks.'Hope this helps.
My son is 18 yrs old and had decompression surgery last September. His story started about the same age as your son. He started with headaches that turned into migraines. He saw a pediatric neurologist and she did do an mri and mra but the chiari either wasn't noted or it wasn't there not sure of which, and was prescribed migraine medication. The headaches did continue and at times would come in clusters, they did get worse over time. About when he turned 17 he developed IBS issues that landed him in the ER April of 2013 did a CT scan of his abdomen which discovered a cyst on his thoracic spine which then prompted a MRI of his spine. When he had the MRI of his thoracic spine the radiologist said the cyst were arachnoid and basically dismissed them BUT (thank god) he did mention he saw the Chiari with a 7mm herniation. I can't tell you how grateful I am that the radiologist noted this when he wasn't even looking for it. Finally we had an answer for his headaches/IBS and by this time he started with anxiety & panic attacks. We saw a great NS here in Phoenix at Barrows and we did surgery last September just 3 days after his 18th birthday. My son has NOT had a headache since surgery!!! his IBS is much better, the only thing is we are still struggling with his anxiety. And I am not convinced it is from the Chiari. both my husbands and my family has a lot of anxiety and depression that runs through them. My opinion is find a NS that you trust and do the surgery before things get worse, he is at a state that if done early it can prevent further complications. I can't tell you how scary the thought of brain surgery was for all of our family but my son is so happy he did it. Please keep us posted, we are all here to help you through this.
Thanks Charlene. Our sons sound a lot alike. My son also has anxiety and panic attacks. I also, do not think this is from the CM. I have a family history of depression and anxiety. I am just worried that this diagnosis will cause more anxiety. Right now he just knows we are going to a NS to have him look at the MRI. I am hoping that we get an appointment ASAP. The waiting and not knowing is unbearable.
It took about a months wait to get into the NS. I recommend you don't let your son know more than he absolutely needs to at this time. He needs to feel as normal as possible and yes telling him more than what you already have will cause more anxiety. My son was old enough to say "mom I don't care to know" he knew what was going on and knew what he was diagnosed with but he really wanted nothing to do with all the details, he just wanted to have surgery and feel better. So I let him be. About a week before surgery his anxiety got so bad I basically had him on clonazepam 24/7 and tried to keep his mind on other things..like how I just went and bought him his favorite car and how awesome he is going to feel driving it when he gets home from the hospital. After surgery the anxiety was still pretty intense because as a teenager he was in a hurry to feel better and was nervous about taking so long. He is recovering great from surgery and still fights fatigue a little when he runs himself down. But we are so thankful we did the surgery before any real damage occurred. Also Please make him feel like a normal kid it really does help. Please continue to ask questions. You will feel better :)
Thanks Charlene and Mandy. I definitely do not tell my son more than he needs to know. I am working closely with his psychologist on this. It is interesting that CM may be a symptom of an underlying disorder. I will have to check that out.
I have been down this road before. Not necessarily with CM, but my daughter was diagnosed with a genetic disorder. She has seen many specialists and been through various surgeries procedures, etc. Now I just have another cause to add to my list. It seems unfair that I need to go through a lot of this again, but I am so happy for the experience I have from dealing with my daughter's issues
My mother says that she was diagnosed with CM. Do you know if it is hereditary?
Thanks again for all your support.
I know with my daughter the groups and friends I made all around the world are the only things that got me through the rough times.
He was diagnosed in June and had decompression surgery (with duraplasty) in February of this year. His headaches and snoring (not sleep apnea, just snoring) have stopped. My son actually wanted the surgery ( of course, at 8 years old he didn't have any concept of what surgery entailed). It was a long hard road to come to the decision to have surgery, and I did a ton of research, got many opinions, but so far it has definitely proved worth it. We found a great surgeon and I felt that I just had to put my trust in him and let all the doubts go.
Bubba said:
Thanks Tama. Do you mind me asking did you son have surgery? Does he have any limitations on his activities?
My son had an mri when he first saw a neurologist for the headaches. Then the neurosurgeon ordered a cine mri. The first were of the neck and cervical spine (upper and lower). One neurosurgeon wanted to do a CAT scan, which I was reluctant to do because of the radiation, and subsequently did not do because another neurosurgeon strongly cautioned me against it (for that very reason).
As far as its being genetic, I guess most of the current thinking is that it can run in families, but I don't know if they are 100% sure, as there is little consensus about anything involving Chiari.
Bubba said:
Thanks again Tama.
My understanding is once we get in to see a NS they will probably want a CINE MRI and an MRI of the spine. Is this correct?
My Mom says she was diagnosed with CM. Can this be genetic?
There are several good pediatric neurosurgeons in Tampa. I'm sure that the pediatrician would not send your son to an adult neurosurgeon but it never hurts to check credentials. The American Board of Pediatric Neurosurgery www.abpns.org is an easy way to ensure the neurosurgeon is also board-certified in pediatric neurosurgery.
In general terms, 7mm is quite small, since the current radiographic definition of a Chiari I malformation requires >5mm of cerebellar tonsillar herniation. But, as many have said, symptoms are more important than size.
Arachnoid cysts and Chiaris are usually congenital findings, so they are indirectly related. Both are usually asymptomatic and the most common symptom for both is head-aches. Just make sure the neurosurgeon is addressing both with you. A large arachnoid cyst is a space occupying mass, which can lead to elevated intracranial pressure, which can lead to a chiari, so addressing the chicken and the egg question is important in patients with Chiaris and intracranial mass lesions.
Timing of appointment is purely dependent on referral. If the neurosurgeon already has the images, you want to follow up after the referral evaluation period is over(you indicate 48 hours in your 4/26 note so a call Monday afternoon would be reasonable if you haven't heard anything).
In terms of the genetic question, there is no single gene responsible for Chiaris, so it doesn't follow classic genetic lines(and there is no genetic test). However, there are clearly familial tendencies(just as there are for migraines, etc). In general, 3-5% of the US population has some degree of cerebellar tonsillar ectopia. If you have a first degree relative(parent, sibling, child) with documented cerebellar tonsillar ectopia, you can roughly double that rate(to 6-10%).
Thank you Dr. Trumble. Were referred to the Neurosurgeons at All Children's Hospital.
It all seems very confusing and overwhelming at this time. I am not sure how worried to be. The according to the report arachnoid cyst is only 24 mm. I am even wondering if the cyst or the CM is responsible for his headaches?
I completely understand your feeling overwhelmed and worried. For me, the more I educated myself and asked many questions here, I felt empowered. I was able to go into the NS office and feel comfortable with what he was telling me because I understood it. It also made me more comfortable with the surgeon because he said the exact same things that I knew from my research, so it made me feel like he knew what he was talking about. Feeling worried is a normal experience. I can remember the day I called my sister and cried for an hour because I was so scared of the thought of my son having brain surgery. Just being able to call her and cry made me feel better. It also helped to know that there is support on this website from people that are going through the same roller coaster ride. Please keep your chin up, although Chiari is very serious, your son with the correct care can live a long happy life. Keeping you in my prayers.
Thank you everyone for the support. We just received a call today and have an appointment to see Dr. Carolyn Carey at All Children's Hospital, St Petersburg, Florida on May 14th. I will let you know how it goes. I am told on the Florida group, that you Dr. Trumble, are the best in FL with ped CM. I just want to stay closer to home at this point. I may need a 2nd opinion.