Gwenyth was diagnosed two days before her 3rd birthday.
Since the age of 2 months she was having seizures, unable to sleep, screaming, and had excessive vomiting. As she grew she developed difficulties with balance and other issues.
She had and MRI as an infant and we were told she had infantile spasms. Later we found this to be untrue and continued looking for answers.
By the age of two the seizures slowed down, but she began to have facial tics. Once again, our world fell out from under us. We saw a new neurologist and got another MRI. This is when we were given the diagnosis of Chiari Malformation I.
Things began to “snowball” from there. Multiple tests were ordered including a cine MRI, which showed a complete blockage of her CSF and therefore surgery was a must.
She had her decompression surgery on May 19 of 2011. We were blessed to have a surgeon whom has done several decompression surgeries and was up to date on the latest techniques. She was in the hospital for 3 weeks due to complications.
I am happy to report that today, she is doing well. She is being followed by her surgeon, due to a CSF leak from surgery, but otherwise, no more complications.
If your child is having symptoms that just don’t “sit well” with you, I urge you to investigate. Follow your intuition and be vigilant. We had doctors telling us “she’s just fussy” or “it’s colic, it’ll pass”. I knew in my heart something was wrong. Today, it is my hope to help others find their path and get the best care for their children.
Awareness is key! View "Gwenyth's Chiari Journey"
My son Julian was diagnosed at the age of 6 completely by accident.
The doctor who read the CT results had no clue what Chiari Malformation was so he had to actually look it up in a medical textbook. His explanation was followed by "Its nothing to be concerned about".
We didn't accept that, especially after researching what chiari was for myself. Julian, who we thought was without any symptoms, had actually been having symptoms since birth but we were unaware that they were chiari related.
Over the next two years we watched Julian start to go downhill neurologically. He went from being a wonderful soccer player (which he had to stop after his diagnosis) to being a kid who tripped over his own two feet.
We chose to have Dr. Luciano at the Cleveland Clinic to do his decompression surgery. He had the surgery in November 2011. Since surgery, fingers crossed, he has not had a single headache (which was his most common symptom) nor has he had any of the bowel and stomach issues that he battled with prior to surgery. He has also improved considerably neurologically.
Julian is now looking forward to being released by the doctor so he can learn to ride a bike and many other things that he didn't do prior to surgery due to balance issues. He is also very big on spreading chiari awareness to anyone he talks to. And he wears his zipper with pride.
He is looking forward to the Conquer Chiari Walk Across America because its the one time of the year that he gets to be around others who understand what he deals with and has been through.
He is truly my little chiari warrior!
Karli was diagnosed at 18 months of age. Her journey has been very traumatic and challenging. She wants every parent to know the symptoms of Chiari. It is her mission “To spread Chiari awareness, one brain at a time.” Please take the time to review the symptoms of Chiari. Her thoughts are prayers are with you.
Matthew was about 12 months old when he started exhibiting symptoms of the condition. At first the symptoms seemed to come on slowly and so there was never a thought that what he would go through in the next 12 months would lead us to discovering a life threatening condition. Matthew has a twin sister so they tended to be at the same stages of development. At 12 months, Matthew was walking steadily and of course attempting to even run but I noticed that as the days went by Matthew was having balance problems, he seemed clumsy. Running became more of a challenge where he would only take a few steps and then fall. Another symptom Matthew had was apparent problems drinking and eating. His throat would make a gurgling sound when drinking and he would often vomit soon after drinking or eating anything. He became more irritable and would beat his head against his bedroom wall at night. He started running fever constantly and was seen by his pediatrician.
The diagnosis for the fever and vomiting was always a cold or pneumonia. Matthew continued to get worse in every symptom and was losing weight drastically. I even switched pediatricians thinking this might be the reason we got no where but to no avail. After almost a year of frustration in watching my son's health deteriorate before my eyes, I went to the ER at a children's hospital in San Antonio and told them to find us a room, we are staying until someone tells me what is wrong with my son.
After 4 weeks of every type of test and screening known to man they finally did a swallow study and found that Matthew's epiglottis was not working properly therefore any food or drink he would ingest was going into his lungs, not his stomach. They immediately knew then that something was seriously wrong. They suspected a tumor but would not know for sure until after they performed an MRI.
I was actually taking a break from the hospital when I got the call from one of the doctors assigned to Matthew's case. She told me to pull the car over and listen. Matthew had a serious condition that was affecting his neurological system and surgery was our only option. This was the worst condition of Chiari that the neurosurgeon had witnessed as his cerebellar tonsils extended to vertebrae #5.
Matthew was immediately taken off of oral feeding and we started administering his meals by TPN. We brought him home and I stayed home with him until his surgery in late January 2004. Matthew had decompression surgery and was in a drug induced coma in the PICU at Santa Rosa Children's Hospital in San Antonio for 6 days. We were told that there was little chance that he would ever eat orally again due to the severity of the Chiari and the nerve damage.
On the 7th day, they woke him up and allowed me to feed him pudding. He ate just like a healthy 2 year old would normally, finishing every drop of his chocolate pudding with no issues! At that moment I knew that we had been doubly blessed, for he came through surgery well and what a wonderful surprise for him to be able to eat again!
Today, Matthew is a very active, healthy 7 year old but almost 5 years ago his future looked very grim. Although he is not able to participate in contact sports or anything that would put him in danger of head or neck injuries, Matthew leads a pretty typical life for a boy his age.
Preston began having headaches at the age of 5 1/2. He would go to the freezer and get every ice pack he could find, put them in a pillow case, and lay on the couch. (He came up with this "remedy" all on his own.) We took him to the doctor, who thought he was just getting a sinus infection, which never came, and his headaches grew more frequent. We took him again 5 months later. This time the doctor ordered a MRI. She said she was sure it would show nothing, but just wanted to make sure. That is where our story began.
The MRI showed he had Chiari 1 malformation. We were referred to a neurosurgeon. “Very scary when you need a neurosurgeon for your 6yr old child.” We met our NS in May 2008, and he ordered another MRI (of Preston's spine), which showed he also has a syrinx from T2-T8. His Chiari was 20mm and very tight. He had decompression surgery in June 08. The doctor said surgery went well, although it was one of the worst cases he had ever seen, and was very glad we did the surgery immediately!
Shortly after surgery, Preston began getting worse headaches. He would say, "here comes another big one", scream for 20 minutes, get sick, then fall asleep for a couple hours. He was readmitted to the hospital, but his MRI and CT looked "ok". After some IV pain medication, his headaches went away -for 48 hours- then got worse!
He was admitted again in July, this time he had a pressure sensor placed in his head. The pressure was so high, the NS had to put a drain in his head to relieve the pressure. August 2008, he was diagnosed with Pseudo Tumor Cerebri and had a LP shunt placed 2 days later. Finally, our little boy was better...until his next MRI in December 2008. The MRI showed that his Chiari returned, with a 9+mm herniation. We were shocked.
He has yearly MRI’s which show that he still has Chiari and Syringomyelia, but he is doing well. He is now 10 yrs old. He still gets headaches and tingling in his legs, but is doing much better than before surgery. Please learn all you can about Chiari...and help us find the cure!
His caringbridge site is: www.caringbridge.org/visit/prestonwells
My name is Grace and I am 9 years old. I have Chiari Malformation Type 1 with a herniation of 9mm. My Chiari was found accidentally by my Pediatric Ophthalmologist when I was 6. I have some vision issues that are not corrected by glasses, so my Dr. ordered an MRI to make sure everything was OK with my eye nerve and discovered my Chiari. I had decompression surgery in May 2009 in NYC. I was lucky that my Neurosurgeon was able to perform surgery without even opening the covering of my brain (the dura). I am now at 3 months post surgery and doing great!
I have 2 sons with chiari malformation 1. Nick is 10 and was diagnosed when he was 4 and Blake is 1 and he was diagnosed when he was 6 months old. Nick started having severe headaches that would wake him up at night and nothing seemed to relieve them so we were sent to a neurologist who ordered an MRI.
I remember the day she called, I was standing in my kitchen. She said the structure looks good but... and my heart dropped, but he has chiari malformation. She sent him to a NS and he explained what it is and symptoms. Nick's herniation is 12 but his headaches are controlled now so he hasn't had surgery.
Blake has multiple health problems. He started having a lot of symptoms of chiari in infants so I told his neurologist that I thought he should check him for it but he didn't think so. He started having seizure type activity so they ordered a MRI and it came back showing chiari.
We went to NS but Blake was to young and to high risk for surgery. His herniation is 17 and was pressing on a lot of nerves and the airway. In February 2012 the NS started noticing his symptoms were getting worse so he decided he need surgery. On March 8, 2012 Blake had chiari decompression surgery 7 days before his first birthday. They removed his c1 and c2 and shrunk his right tonsil, completely resected the left and shrunk the cerebellum. He covered with duraplasty. Blake did really good with the surgery but 3 days after he completely quit eating and started having worse stridor. He has stridor anyway because he has subglottic Stenosis but it was worse. Ent discovered he has a paralyzed vocal cord. He ended up coming home with a ng tube and a very sore throat.
Now it's March 21 and his breathing is a little better and he doesn't have a feeding tube anymore. He still has a long road ahead of him but we are taking it one day at a time.