Since my diagnosis and surgery I've become acutely aware of the symptoms I used to have when I was younger that went undiagnosed - frequent headache, light sensitivity, unexplained sore neck, etc... so when I thought my 4 year old daughter was showing similar symptoms last summer I had her checked immediately. The pediatric specialist said there was nothing to be alarmed about yet, and to just monitor how the next few months go and to come back if things change or get worse... so we're going back. She's been complaining of more neck pain, her eyes always hurt, especially in bright settings, and she's been having trouble swallowing drinks without coughing some of it up. I'm not a pessimist, but I am a realist - I know what the signs are leading up to. So that's why I turned here...
If you have a child with CM, what kinds of non-surgical treatments have any of you found helpful? What kinds of activities or triggers have you tried to avoid? If your child needed decompression - how did everything go, what is their quality of life now, and were there any complications?
My daughter was born two years before I was even diagnosed with CM, and before that the only thing I had to worry about passing on to my children was a touch of asthma. I know it's not my fault she may have my condition, but I can't help feeling guilty and angry. My life has been a living hell for the past three years and the thought of her going through what I have been through and am still going through makes me ache in the deepest part of my heart. Anything that anybody can suggest to help us through this would be deeply appreciated.
Hi hun. Im 46, chiari A-symptomatic now 2.5 yrs, csf blockage on my right side. No surgery. My 20 yr old daughter was recently dx with a syrinx but they told her no chiari or blockage. Strange. Now we just have to monitor her with mri’s. She has headaches and so on.
For now, theres not much we can do. But for me because I suffer daily from right-sided pain and pressure I have been able to get control of it without no medications in fact I took advil for the past two years. Now Im taking holistic enzymes that control or help reduce and relieve the inflammation which is what caused all the pain and pressure. Im doing great on it. My neuro was happy to hear. Product is all natural called Heal N Soothe by Livingwell. Google it! So far, this is working for me! I take three in the morning and and three in the afternoon. I’m not perfect but I’m doing better & I have a lot of faith in God.
Trust your instincts but don’t drive yourself crazy. I’m not sure what state you’re in but I know one of the top pediatric Chiari neuros here is in Orlando, Florida Dr. Trumble, he’s excellent!
Oh also you were worried about your child’s activities, just be careful with the back of the head, jumping, falling, being pushed & certain physical activities with contact.
Hi DizzyE, my son was born with Chiari Malformation with Syrinx and had all the same symptoms as your daughter, many worse and many many more. He wasn't diagnosed until he was 14 mos old when I finally demanded and MRI be done. His symptoms were so bad that it would have killed him if he didn't have decompression surgery. He had his first decompress surgery April 2011, got bacterial meningitis that almost killed him, hydrocephalus, had a revision, eight months later a second decompression surgery, another bacterial meningitis infection, 3 lumbar drains, a PICC line, another revision, got hydrocephalus again that didn't clear up quick enough so he had a VP Shunt in, a year later had the shunt out, lots of physical therapy but all in all he HAD to have the surgery. He has a few side effects like random vomiting, dizziness and tires out. He used to have seizures right after the surgeries that cleared up. He also has a strider which when he gets upset will cause vomiting and passing out but that is few and far between now. The thing about Chiari is that it will always be a problem, there is no cure just blanket fixes. You should have her checked with a full MRI of the brain and spine to check for a syrinx. Have a CSF flow done also to see how that works for her and her ventricles and possible blockages. Myself, my husband and daughter all had MRI's done to see where he would have gotten this from. None of us have it, however in both sides of the family there are similar genetic defects within the same pool. His life was also a living hell and I feel for you and your daughter. Make sure you have an excellent pediatric neurosurgeon that specializes in Chiari for her. He cannot eat certain foods texture wise it seems to aggravate his hyper gag reflex. Even brushing his teeth in the morning will make him vomit. He seems to be worse in the morning and afternoon now where he used to be worse in the evenings with vomiting. Chiari is complicated and a deformity in that the brain should not be anywhere else but in its proper place...hence all the problems it causes. You'll have to way her symptoms against the docs recommendations and go with your gut. I am always here to listen and help if you need it!
My daughter was diagnosed at age 20, decompression surgery right after diagnosis and she is now 23. My daughter could be the poster child for the worst case scenario of what happens when a little one is left without a diagnosis. Based on your history and your child's symptoms, I would go to her pediatrician and request that she receive an MRI. I would not wait. If the doc says no, I would push it or find a doc who will refer for an MRI. If your daughter does not have CM, then something is causing her symptoms, kids who are healthy don't have those symptoms.
My son was 13 when he was diagnosed and had decompression surgery 4 months later after MRI showed CSF blocked. He had pains in the back of his head triggered by Laughing, sneezing, coughing, playing tuba, and things of that nature. His decompression surgery went beautifully and 6 months later, he is pain free and has no limitations. If you are anywhere near the Florida area, I can't even say enough good things about Dr Trumble and his whole office. It's just my opinion, but I think your given your diagnosis w/ CM, the pediatrician should be a little more proactive and have an MRI ordered. There would be no harm done and if she does have CM, you can start getting a game plan in place for her. My thoughts and prayers are w/ you.
Hi hun. Im 46, chiari A-symptomatic now 2.5 yrs, csf blockage on my right side. No surgery. My 20 yr old daughter was recently dx with a syrinx but they told her no chiari or blockage. Strange. Now we just have to monitor her with mri's. She has headaches and so on.
For now, theres not much we can do. But for me because I suffer daily from right-sided pain and pressure I have been able to get control of it without no medications in fact I took advil for the past two years. Now Im taking holistic enzymes that control or help reduce and relieve the inflammation which is what caused all the pain and pressure. Im doing great on it. My neuro was happy to hear. Product is all natural called Heal N Soothe by Livingwell. Google it! So far, this is working for me! I take three in the morning and and three in the afternoon. I'm not perfect but I'm doing better & I have a lot of faith in God.
Trust your instincts but don't drive yourself crazy. I'm not sure what state you're in but I know one of the top pediatric Chiari neuros here is in Orlando, Florida Dr. Trumble, he's excellent!
When I was diagnosed with a syrinx the surgeon told me that if I didn’t have surgery, I would be in a wheelchair. The syrinx can cause permanent damage to the spinal column but can also collapse when a corrective procedure is done. I experienced pins and needles in my arms and legs along with a ton of other chiari symptoms.
