My 7 year old son was just diagnosed with Chiari malformation 1 and Syringomyelia. He has a small syrinx in his c spine and a larger one in his Tspine. He has been getting headaches for over a year at least 1x per week, but they have not really seemed that bad, I would give him a tylenol and he would be fine, I was getting him tested for ADHD because he has a hard time focusing, and he wears glasses because his vision is bad and one eye goes crosseyed, he is also pretty clumsy (so I thought all along that this is just who he is) I took him to the Emergency room because on Monday he had a super bad headache and literally passed out for about 20 minutes, then woke up and vomited, so I took him to the emergency and they did a CT scan and noticed what appeared to be a Chiari. They transferred him to the Children's Hospital where a NS performed an MRI and confirmed that he had Chiari malformation and the 2 syrinx's mentioned above. The neurosurgeon reccomends that we do decompression surgery ASAP so they want to schedule it for Wednesday. I asked him how often he has performed the surgery on children and his response was between 10-15 times per year for the last 13 years, he said that he deals with chiari/syringomyelia children much more than most NS because he is at a Childrens Specialty hospital... I just don't particularly know much about what any of this is, or the risks, he mentioned some, and his stats were pretty wild. He stated that there is only a 10% chance that complications will arise, however in that 10% the risks involved are pretty severe. I am scared, and it is extremely hard to be the strong one in front of my son, because he does not uncerstand completelly what is going on.
You are right for looking up this site, I was diagnosed at 19 so I was old enough to have a real discussion about it later and I saw how hard it was for her so I can understand how you’re feeling. Firstly if you don’t have complete faith in your surgeon you can always look for another one! What I would say is before my surgery I had very bad spasms etc and the surgery alleviated some symptoms, so it is important that the chiari is treated. My main piece of advice is to do your research so that you’re able to ask the ns questions that they may not be expecting. You’re obviously a great mum and you you should go with your gut about doctors/ surgeons and find one that you’re happy and comfortable with. If there’s anything else we can help with then feel free to post, I hope your son is feeling okay! Xx
My heart pours out to you for your son! Everything will be ok. His symptoms sound bad and it does sound to me that he would need the decompression, they may get worse if untreated. If your doctor says he does that number of decompression surgeries, it sounds as though he may be very capable of the task at hand. I myself had the decompression and my doctor said he only performed 5-7 a year. He had also did a previous procedure on me so I was already familiar with him, however your doctor sound like he knows what's up. They can insert what is called a "shunt" which is basically a mesh made out of natural materials to "patch" the skull on the inside... I have heard some not so great things about the "shunt", that may be a risk. My doctor did not insert a "shunt" for me and it's been ok. Now...to be totally honest...he may still suffer from some symptoms after the procedure, and, they may never go away...However these are not life threating symptoms. I would highly suggest listen to your doctor, get some other opinions if you would like, but a child specialist with the experience that your doctor has sounds like your best option. God Bless You and Your Son! DC from Chicago
First of all, I am sorry you and your son have to endure this disease. I, like you, was shocked and confused when told my daughter had a Chiari Malformation and syrinx and needed immediate surgery. Perhaps it will comfort you to know that she had the surgery in April 2011 and is feeling great today. Her syrinx on MRI had shrunken by more than half and besides some headaches now and then, she's happy and healthy. Some things I would ask the neurosurgeon would be the type of dura patch he uses, if the tonsils will be cauterized, how long your son will be in the hospital (she was in 3 days), make sure you have plenty of laxatives available post surgery and listen to the doctor regarding rest and taking the pain meds. My neurosurgeon said that the surgery isn't considered "dangerous" when compared to other brain surgeries. Hey, surgery is surgery and when it's on you or your child, you worry. My daughter unfortunately dealt with some of the complications of the surgery, but recovered completely. I wish your son a quick, uncomplicated recovery and you some peace with your decisions.
I'm in the hospital myself now, so I'll try to help quickly here today. Comfort level is the first thing to find. You can find a surgeon who does 10-15 cases a month rather than year to cut down some risk and gain better outcome. Also, although scary, blackouts are common Chiari symptoms, and may not mean immediate emergency surgery as with compromised heart rate and respirations. It's better not to rush if you don't have to and find the right doc first.
I suggest you click on the Resources tab and Doctors tab above for good quick links. There, Mandy, moderator here, posted a list of Chiari docs, and some are in CA, so click here:
Mandy also informed me of Dr. Theodore. Personally, from what I've researched, if I was able to travel to the next state, AZ, I'd place my son in this doc's hands:
I agree with gag. My neurosurgeon performed 2-3 decompressions a week. He was referred by a top spine doctor who only operates on adults, saying that if it were his daughter, he would go to this neurosurgeon. No bedside manner at all but that’s not your priority when looking for the best surgeon for your child.
Definitely research and be sure the Dr is a board certified pediatric neurosurgeon with many Chiari patients. The passing out could be due to POTS which is common in Chiari patients and can be managed with medication. My daughter and I both have CM1. I just had my first c-spine surgery.
She used to pass out but that hasn’t been an issue recently. She changed her activities and that seems to help most if the time.
There are so many related disorders, he should be checked for EDS prior to any surgery. He should also have a sleep study to assess additional possible risk with anesthesia. Any good Dr. Will address these issues with you prior to surgery.
Also keep in mind the surgery us NOT a cure. Often patients need to undergo decompression more than once. Just a few things i have learned through this journey. I know you must be terrified, but take your time in making an informed decision. Don’t be afraid to trust your gut instinct and never be afraid to push for what you feel your son needs. I wish you and your son the best.
Monkeysmomma, I agree with others that you need to feel comfortable with the NS. For me, there is a difference between the experience of 10-15 yearly or several weekly. All of my research has been on adults, so not too sure about the whys with peds cases, but do some research and asking about the types of surgeries for decompression. Does this NS perform:
a duraplasty -why or why not?
A laminectomy
A tonsillectomy
Plate placement to back of skull- why or why not?
These are all performed or not performed based on the preference of each NS. For example, If an NS does not do the duraplasty because his patients have a high incidence get CSF leaks when he does…move on to to another NS!
Is there any reason why you can’t postpone the surgery for a month or however long it takes you find the right NS? If your little mans situation allows for more time I would wait.
Jenn those are excellent medical questions you posted, The only thing I would add is asking what percent of surgeries have successful outcomes. Not just defined by looking good on an MRI, but absence of symptoms experienced before surgery.
So Monkeysmomma, please let us know how he's doing and what your thoughts are. Big long distance e-hug for you both
So I personally feel lucky to have the NS that we have. He explained all the risks from outside in step by step, and he explained that he would in fact use a dura patch made from cow material. He said that that material has been known to leak, but he is not concerned with that. He also explained that he would rather not do the surgery if it is not necessary, he would prefer to monitor him and do "serial" MRIs to monitor if the Syrinx is growing or anything changes, but he did order multiple other tests be done, like an EKG and an EEG, he ordered a pediatrician come in and do his own observation, and a cardiologist to come in and do the same. in the EEG they found seizure activity, so he would like to treat that, and see if the passing out goes away. are seizures a symptom of the chiari or the syringomyelia?
I may go for another opinion, however I feel that my son should stick to a pediatric neurosurgeon, and my resources are pretty limited around here, we are on medicaid, and I do not have the means to travel to far.
We are now at home. I decided to go ahead and wait, and go for a second opinion, because after being in the hospital for 12 days, the Neurologist came in and said that the seizure activity that was found in my son's EEG was not seizure it was "migraines" and that they are not caused by the Chiari, he said that he has probably had the chiari since birth and it is not causing him any problems. He just happened to get a very bad migraine and passed out and threw up... and that this is "normal"
I was like "Seriously?!" so it is NORMAL for a 7YEAR OLD to get migraines, and the fact that he has this chiari and syringomyelia is just a coincidence???
Definately time for a second opinion, and the NeuroSurgeon seems to be pretty great, but I still need to know what other Neurosurgeons feel, so I am going to take my son the the Pediatric neurosurgery at Children's hospital in Los Angeles.
Good call. I really dislike when some doctor talks nonsense to you. Of course his “non-seizures” and “migraines” are caused by his chiari and syrinx. You sound like a great proactive mom and I am sure you will find a team of doctors to properly treat your son. I had to point out some obvious things to the hospital staff and it took some push back until we were all on the same track. But in the end they agreed my child didn’t have “migraines” and gave her the treatment she needed to heal. Best of luck to you.
Thanks! I mean, I really like the neurosurgery team, but the rest of the doctors I wanted to punch in the throat. They talked down to me, and they just kept going round and round in circles. Joalexa said:
Good call. I really dislike when some doctor talks nonsense to you. Of course his "non-seizures" and "migraines" are caused by his chiari and syrinx. You sound like a great proactive mom and I am sure you will find a team of doctors to properly treat your son. I had to point out some obvious things to the hospital staff and it took some push back until we were all on the same track. But in the end they agreed my child didn't have "migraines" and gave her the treatment she needed to heal. Best of luck to you.