I wish I had all of the answers....when do you know if it right to have surgery or not? My 15 yr old daughter has a 18mm herniation, it all started with hand tremors, fatigue, and headaches. We saw our NS in Boston, who feels the headaches are being caused by the Chiari and feels she will get relief from having the surgery We wanted a little more than that, she had an MRI of her spine Wednesday which was negative for a blockage. We told her, basically, she could have the surgery and help fix the headaches, or she could learn to live with them. Her reply, "I dont care." Either was good for her, with this being said, I am willing to think she is suffering more than we know, and she wants us to make her decision, that being, have the surgery. What do you think about having the surgery with out the blockage? When I consider the size of the herniation, it could help a lot? Toughest decision i have EVER had to make........
In addition, I am trying to push for her preference, like someone said, she may have said ,"I dont care" so that I will make the decision for her. Last night she asked again, "Mom, am I going to have brain surgery?" I said, "A lot depends on how you feel about living with the headaches or wanting to get something done to fix them." Her reply, "Im only a kid, you are supposed to make that decision for me." So I am thinking that she want her headaches gone, but not quite sure she wants to have surgery to do that?????? Thank you:)
Pammy,
Kids usually fair better than adults with the surgery because it has had less time to do damage. 18mm is pretty significant. It's not just the blockage it's the damage done over time. The herniation puts pressure on and does damage over time to the brain stem. Your brain stem is large nerve bundle and is factor in many Chiari symptoms. With Chiari your brain is under pressure which isn't good either. Decompression surgery is a treatment not a cure and the herniation of course will not go away by itself. That being said it's a serious surgery and many of us are hesitant to give advise for kids. Some people have good results from surgery and symptoms lessen or go away and others develope new ones. The most important decision when doing the surgery is the person doing it.
I am so sorry that you are going through this. It's so difficult to watch our kids suffer. My son is Type 1 Diabetic. It's also hard making this dicision for somebody else. I'm praying for you and your daughter.
Wendy
Thank you Wendy.....I have read and been told by many that the size of herniation has little to do with the symptoms, however, when people and Drs hear it is 18mm, they do consider it to be large and worthy of treatment. My NS told me that although they do not decide on surgery based soley on the size, however, the larger the size the higher the chance of surgery. It is large, and it would be so much easier if i could base the decision on that alone, it would also make things easier...
Pammy,
My heart goes out to you making the decision. 18mm is large and she's very young. Most times with gravity and wear and tear over a lifetime they continue to move and or become more set. That's why so many of us get diagnosed in our 30's. I had balance and coordination issues my whole life but in my 30's started with the bad headaches and pain.
Wendy
Hi,
I never tell anyone to or not to have surgery. My only advice is ....If you do decide to have surgery that does not guarantee she will not have headaches. It may even make them worse. I am not trying to be rude or sway you either way. I just want to make sure you have all the facts. Please read about post op symptoms and include that with your current information. I want your daughter to be as well as possible. I want her to be better than any of us. I totally agree with Wendy....Children do better if treated at a younger age. Please know we will always be here for you & your daughter no matter what you decide.
Tracy Z.
I would only suggest that you at least get a second opinion. And you can find a lot of help on www.conquerchiari.org . It may be a really good idea to nip this problem in the butt right now, so you would really need an neurosurgeon or neurologist who knows what to look for, and might be able to tell you where your daughters health is headed. For example, I'm 30 now, but I've had horrible posture and fatigue since I was 16. These were warning signs ya know. Eventually the posture thing caught up with me and that's what really set off the alarm bells. That's all i got, best of luck darling :) much love to you and your daughter <3
I responded to your blog, but will also respond here :)
I would have her talk to the surgeon and be able to ask them an questions she wants. She may have questions that you can not answer such as what kind of painshe will experience with surgery, or how much hair they will shave. Maybe she could talk with other teens that have had surgery and ask them questions as well. I would tell her that even though she is only a kid and you make decisions for her, that you still value and would like her opinion on surgery. have her read some things here or at www.conquerchiari.org where there is info in simple terms. Make sure she understands that surgery is a "treatment" and not a "cure". There are also no guarantees that her headaches or other symptoms will go away. Surgey is designed to take away the pressure and lessening the headaches and stop the progression of any nerve damage or damage to the brain stem. Explain to her that you want her input and tell her that it is a difficult decision for you too. You love her and want the best for her :)
The discussion I usually have with teenagers is related to how much the head-aches, tremors, etc are affecting their lives. Is your daughter missing school? If so, how frequently? Is she altering her lifestyle(going out with friends less, taking longer for homework, stopping extra-curricular activities)? No one wants to volunteer for surgery. Simply calling her decompression "brain surgery" lets you know her level of apprehension. It never hurts to have further discussion with the surgeon(or a second neurosurgeon, if desired). Yes, a 15yo is a child but they are not an infant and they need to be involved in the decision making process.
Really, the question comes down to how much the head-aches are affecting the life of the patient. If she is limiting herself, something needs to be done. If not, there may be little downside to waiting.
The above answers have really given good advice in terms of expectation also. Surgical repair is never as good as never needing surgery in the first place. The goal is improvement, not elimination, of symptoms.
When you say the MRI was negative for a blockage was in a CINE MRI or just a spine MRI looking for a syrinx?
15 is old enough for her to participate in the decision process. I understand that she is scared and would rather have the decision made for her but only she can say how she feels and how the pain impacts her life. If it's stopping her from doing what she wants to do maybe it's a good time for surgery as she is young and resiliant. If she feels like her life is full and it's just a minor nuisance then perhaps waiting is ok.
That is a good question, to be honest...I thought they were the same. They told me they were doing an MRI of her spine to check for fluid. What is the difference between that and the CINE? SHould I suggest another, what are the odds that it would be different? Just wondering....
THis is it as far as the pain and nuisance goes...I am not sure that she has just lived so long with the headaches that she may not know the difference?? The only thing swaying me towards the surgery is that she is young and resiliant, and I am thinkning doing it know would be best?? Either way, it is still tough. I would appreciate you letting me know your thoughts on the difference of the two MRI's...THANK YOU SO MUCH!!
The CINE MRI actually measure the flow of CSF through the brain. It can tell if the malformation is impeding the flow which can contribute to symptoms and eventually lead to a syrinx. The spinal MRI just shows if there is already a syrinx formed.
I would ask your NS about getting a CINE Flow MRI since you are on the fence about surgery.
I appreciate you taking the time to respond. At this point, I am keeping a journal and watching closely how much this is effecting her lifestyle and social life. I would say this Summer, for sure, headache and fatigue was the culprit of her Summer fun. She slept and had headaches for most of it. Her preseason field hockey pretty much the same. Now that she has to be more on a schedule, it seems to come and go. Mainly now, fatigue only, but this is also typical of a teenager. Two days ago she went to bed with a bad dizzy spell, and also woke with one. It went away as the day went on and she has not complained since. I ask often how her head feels or if she had a headache that day. Im not so convinced that she did not have one when she says she did not. I also feel if it was bad enough, she would have had to tell me. With all of this said, we left it with the surgeon that we would closely monitor the Fall and keep a log, and try to see how it goes from there.
Thanks again.......
Dr. Trumble said:
The discussion I usually have with teenagers is related to how much the head-aches, tremors, etc are affecting their lives. Is your daughter missing school? If so, how frequently? Is she altering her lifestyle(going out with friends less, taking longer for homework, stopping extra-curricular activities)? No one wants to volunteer for surgery. Simply calling her decompression "brain surgery" lets you know her level of apprehension. It never hurts to have further discussion with the surgeon(or a second neurosurgeon, if desired). Yes, a 15yo is a child but they are not an infant and they need to be involved in the decision making process.
Really, the question comes down to how much the head-aches are affecting the life of the patient. If she is limiting herself, something needs to be done. If not, there may be little downside to waiting.
The above answers have really given good advice in terms of expectation also. Surgical repair is never as good as never needing surgery in the first place. The goal is improvement, not elimination, of symptoms.