My granddaughter Is 7 and was just diagnosed. Is there any activities she should be avoiding?
It depends on no much it is currently effecting her. If it is causing notably disturbing symptoms she should definitely limit her physical activity and strain.
Jumping, riding roller coasters, running around for prolonged periods of time, unnecessary eye strain…
The list varies depending on the protrusion of the cerebral tonsils and the specific symptoms.
Best of luck! <3
-Olivia
Yes, I agree. Anything that jars the neck - sports that create strain on the neck, or jarring. She needs plenty of rest and sleep, but not over-sleep either. I have found that prolonged lying down, can be hard on the neck and cause more symptoms the next day too.
I would be wary of, and not allow things like gymnastics and a lot of tumbling. It really is just using common sense and thinking about what a particular activity does to the head and neck. Most of us can imagine how an individual activity is...what it requires the body to have to do to participate with that activity. And if you can picture the head and neck, and how the brainstem is dangling into the spine....being squished, essentially, then picture what each individual activity requires the body to do, and what it does to the neck. Basically picture what the activity causes and requires the neck to have to do during the activity.
Also, grown-ups driving your daughter in their car should be extra careful. Sudden stops can jar the neck, and certainly fender benders or worse....a major accident, can be very dangerous.
I hope this helps. Good luck.
My son is 13 and just diagnosed this last year after migrains and loss of vision. Doctor told him absolutely no restrictions despite specific questioning about roller coasters and trampolines. My 13 year old heard this and was happy. I advised him that doctors can be wrong. Long story short they had bounce houses the last day at school. He enjoyed them and then had a day following filled with headaches. I understand they don’t want to limit the kids, although as a parent I don’t want to make it worse or induce symptoms. Hope this helps.
Yes, doctors can be wrong....I am a prime example of that. You have to go with your own common sense a lot, as well as study up and read about the condition to learn. Take others' experiences and learn from those too. My doctors never wanted to be completely honest and open with me, but because I'm an adult, I could push for answers. I pushed to get more in-dpeth answers and did get "some." That, coupled with my own research, I found out a lot more than what the doctors were willing to share. I found out how serious, and how dangerous brain sagging and chiari's can be.
If ever you have doubt....go with it. Research and go with your gut feelings with things. That is the best advice I could give. I didn't just take what doctors told me as "the golden word." They don't want to scare people, they don't want to sometimes...elaborate on things, and they many times, just want to give generic answers that don't fit all cases and all people. We, as parents, have to be our children's eyes and ears. We have to be their number one advocate, and we have to be the same for ourselves. If you want, you can check out my book that I wrote on my experience, called, "It's all in Your Head." Here is the link to Amazon....http://www.amazon.com/Its-Your-Head-Maria-McCutchen/dp/1613460716/ref=sr_1_1?s=books&ie=UTF8&qid=1340461645&sr=1-1&keywords=it%27s+all+in+your+head+maria+mccutchen
Maybe my book could help shed some light on different topics....
Good luck to you all and God bless.
Maria
You both are so right! (Olivia and Marie) It's hard to find physicians who will be honest/open with you. In fact the first surgeon who did my surgery told me I was 'cured'. Your never cured of Chiari, only the pressure can be relieved and more space made when that time is needed.
As Maria said, research is key, and I feel, having a good Neurosurgeon...if she has not been consulted by a Neurosurgeon, then I highly suggest this. You can Google Neurosurgeon with Chiari experience, having experience is MOST important. This is how I found my current Neurosurgeon and also found out my first had ZERO experience and why I have the complications I do today. Neurologists, I've found, have a tendency to say "its really nothing". My cousin was diagnosed too after suffering with headaches from the age of 10...that is what her Neurologist said, its nothing. But after seeing a Neurosurgeon and having a special 'flow study CT Scan' , it was determined she did not need surgery but was suffering not only Chiari headaches, but clustered migraines due to the activities she was doing. She had to make some major changes.
If you go to theme parks, they have it posted, anyone with a possible Neurological problem should not ride the rides. Anything jarring/jerking the head or even running around causes increased intracranial pressure with Chiari patients...As Olivia and Maria said, it depends on the severity of the descending Cerebellar Tonsils and how well the Spinal Fluid is moving between the space at the base of her neck around her brain. It's when this is compromised that symptoms are worse.
Blessings to you my friend...feel free to look me up on facebook if you want to message me. As i've said, over the last 7 years, I've done ALOT of research and pushed the docs into looking deeper when symptoms weren't better and finally found out that even more was wrong. Not 'simple' Chiari Malformation, as ALOT of docs like to refer. This is a very complex disease.
Stephanie Hembroff.
Hi all,
Yes, Stephanie is right....anything jarring or jerking should be avoided, and to me, it just takes thinking about everything you do or are about to do. Think about the motion it causes, etc.
I have a blog at www.arachnoidcystsupport.blogspot.com where I write about different issues to do with all the types of neurological issues I deal with, from brain sagging, Chiari, and my brain cyst. You may want to follow me there. I try to offer good information about these conditions...news...tips for living with these problems, etc.
You can also see my book, "It's all in Your Head," on my site, or you can go to Amazon.com and get a peek inside the book. I have heard it has been helpful to countless others with any of these types of brain issues.
Take care all and God Bless!
Maria
Our nsg told us no blowing of object because of the pressure it puts on the cranial/cervical junction. He also advised no contact sports, roller coasters, trampolines. My son had his surgery 2 years ago and is still on these restrictions. If he over does something, he suffers. I know a few people from up there go to Seattle to see a ped nsg.
Good looking out on your part to ask these questions. when my daughter was first diagnosed, I thought that if there was anything to avoid, the doctors would have said, right? Well as pointed out already, that is not always the case. The only thing I would add to what everyone else has already said it two things. One, use your mommy instinct (even if you are grandma, you obviously are involved enough and care enough to have it as well). You can look at things and tell if you think it is going to be a problem. But don't put her in a bubble and not let her experience stuff either. Sometimes its best to learn from the past that "I don't feel good after doing that," than "Grandma's mean, she won't let me do anything" before approach. Second, try to keep a journal. As others said different things affect different people. when my daughter was getting headaches and we thought we were doing all we could, I started a journal to make sure we weren't missing anything. At night, I wrote down what we did that day (in general terms) and how she reacted. soon I put it together that every time we went to the park, she got headaches that night. Next time we went to the park, I watched her play closer to see where the problem could have been. Her sister was giving her underdogs on the swing many times over. We told them no more underdogs, and teh headaches from the park stopped. sometimes even little solutions you don't think of will come to light when you review the day.
Yes, Amber, I think the Pediatric Neurosurgeon your mentioning is Dr. Richard Ellenbogen. He's the Chief of Neurosurgery at Harborview and Childrens Hospital in Seattle. His specialty is Chiari Malformations. He also has a great website article, just click the link below.
He's a FANTASTIC physician, with the philosophy, "Love the patient more than you hate the disease". GREAT bedside manner.
Wish you all well, Blessings!
Stephanie.
Hi,
I just want to add that a symptom diary is something I promote and encourage others to do. I talk about this idea on my blog at www.arachnoidcystsupport.blogspot.com as well you can read my book on dealing with brain issues in my book, called, "It's all in Your Head," by Maria McCutchen. You can read bits and pieces in the book on Amazon.com
I have come to learn a lot about brain cysts, chiari malformations, even brain sagging. So visit my blog, and if you'd like...look into my book. You may find similarities in my story and yours, get some useful tips and information, or just find it a book/story that you can relate to.
Good luck to you all and best wishes!
Maria McCutchen
Hi everyone! I agree with all the posts. It boils down to listening to your child/grandchild, your own body, research and common sense. Tuning into the body and what it is trying to tell you is essential. Say for instance, your granddaughter plays on the monkey bars (hanging upside down) during recess and comes home complaining of headache or dizziness; then talk about her day and learn what may have triggered the headache.
For me as an adult, I thought a lot of my issues were from aging and prior job-related aches and pains. I let it go for YEARS. I stayed in constant pain. I lost 30% of my hearing. Finally, I decided to do something because the pains went from tolerable with pain relievers to can't stand of moving. I was tested for Lupus, RA, and MS. I went thru 4 doctors before I found the right one that specializes with the brain and spine (especially Chiari). I am 3 weeks post-op of decompression.
Ms Kimberly, I wish you well and some peace of mind. Having Chiari can be frustrating. Just "listen" to how your granddaughter explains aches and pains. At her age explaining things may be worded then pictured differently than an adult explaining it. Talk a lot about her activities. Pinpoint when the pain started. I think that will help you and the family. May GOD Bless!
Great post. there are tons of parents and grandparents here who can help you out.
I agree too....parents and grandparents, even, should really listen to their child/grandchild. Even at young ages, children can tell you when something is wrong. If you, as a parent know other children who are able to do certain activites, while your child is complaining about certain symptoms - certain aches and pains when they do the activity, take it to heart. Listen to them is my key advice. For months, nearly a year really, I wasn't listened to and I was an adult. It was frustrating and I had communication skills that children do not.
I wrote about my experience with my Arachnoid cyst and shunt that lead to brain sagging and a Chiari Malformation in my memoir, titled, "It's all in Your Head," by Maria McCutchen
You can take a peek inside.....
I wish all those dealing with brain issues the best....the best of luck, the best of care, and the best that life has to offer.
Maria