13 Year-Old Back to School One Week After Rare Brain Cyst Surgery
80Amazingly Quick Recovery
First Came the Vomiting
In January 2006, 13 year-old Jimmy Graves was having intermittent episodes of morning vomiting, shortly followed by excruciating headaches, unrelieved by medicine. He would wake up, eat two bites of cereal, and then go straight to the bathroom vomiting bile. This ritual became an unfortunate way of life for the Central Florida seventh grader. The vomiting would come at unpredictable times: in math class, after school, before bed, and other non-patterned times.
Per the recommendation of a local walk-in clinic, Jimmy was referred to Nemours Childrens Hospital in Orlando for an appointment with a pediatric gastroenterologist. Suspecting GERD (Gastroesophageal reflux disease), the doctors at Nemours scheduled Jimmy for an endoscopy. They inserted a little chip at the bottom of his esophogus, along with a portable transmitter to read the acid levels from Jimmy's stomach. After several days of readings, the report came back normal. Jimmy did not have GERD. The doctors were perplexed by Jimmy's frequent episodes of vomiting. They recommended he keep a food diary to correlate any relationship between certain foods and the unexplained vomiting.
Next Came the Headaches...
Over the next several months, Jimmy continued to wake up with vomiting of bile and painful headaches. On one such morning, he took 2 Rapid Release Tylenol. He still went to school, but within an hour and a half, Jimmy was sent home by the school nurse, still suffering from a severe headache. Jimmy continued to have headaches every few days.
After catching a cold, Jimmy visited his pediatrician. After mentioning the headaches to Dr. St. Martin, the doctor asked Jimmy a series of questions to rule out migraines. Based on Jimmy's response, the doctor decided that it didn't fit the migraine pattern, so he ordered an MRI of the brain.
Jimmy was sent to a local imaging center for an MRI, and they put him in the open MRI scanner. The open MRI showed a "signifcant dilation the posterior horn of the right lateral ventricle". The radiologist suggested another MRI be prescribed for a closer look at his brain on the enclosed scanner. After going in for a closer look, the radiologist found a large intraventricular cyst in the Choroid Plexus region of the right lateral ventricle (on the right side of Jimmy's brain).
MRI Image of Jimmy's Brain
The "Conservative" Approach... Suffering
Jimmy was referred to a pediatric neurologist in Tampa, Florida. The neurologist suggested Jimmy's headaches were migraines, unrelated to the cyst, and the cyst was an incidental finding. She prescribed Topamax for the headaches, and referred Jimmy for an appointment with a pediatric neurosurgeon.
Jimmy next saw a pediatric neurosurgeon in St. Petersburg, Florida. She said that the cyst was unrelated to the headaches, and she believed in a conservative approach - "watch the cyst and wait", even though Jimmy was clearly suffering. She recommended that Jimmy have a second opinion. From a handful of pediatric Neurosurgeons in the state of Florida, Dr. John Ragheb at Miami Children's Hospital came highly recommended.
The True Diagnosis and Prognosis
On Tuesday, August 1st, 2006, Jimmy saw pediatric Neurosurgeon, Dr. John Ragheb. He is the Director of the Neurosurgery Department at Miami Children’s Hospital. Dr. Ragheb listened carefully, and pieced together Jimmy’s history.
Dr. Ragheb said that Jimmy’s cyst was congenital (he was born with it). He made the correlation between the morning headaches and vomiting; a classic result of increased intracranial pressure. The cyst was partially blocking the flow of CSF in the brain ventricle, and was blocking it more in the morning upon wakening. Dr. Ragheb said that Jimmy’s cyst location was rare. The size of the cyst was enough to warrant brain surgery to prevent further growth, and exaggeration of the symptoms causing the suffering.
Rare Congenital Brain Cyst Causing Headaches and Vomiting
Miami Children's Hospital
New Frontier of Brain Surgery
The treatment for Jimmy's brain lesion would be endoscopic cyst fenestration, with Brain Lab Navigation. The doctor makes a small hole in the skull near the cyst, and puts a tiny scope with a camera in the brain. He takes a biopsy of the cyst and its contents. If it is simple CSF fluid in the cyst, then the cyst will be drained.
Jimmy was scheduled for endoscopic cyst fenestration surgery at Miami Children's Hospital on Monday, October 30th, 2006.
Brain Lab Navigation Surgery... As Seen on Grey's Anatomy
Jimmy endured Neuroendoscopic cyst fenestration surgery with Brain Lab Navigation. The surgeon drilled a small, 3 cm hole into the skull. The cyst was extremely large (he compared the size of the 3cm hole to the size of the cyst, and said it was like an elephant to a mouse). The contents of the cyst were drained and consisted of clear spinal fluid.
After undergoing brain surgery on Monday, Jimmy was discharged from Miami Children's Hospital on Wednesday. He went home, and returned to his eighth grade gifted classes at Crystal River Middle School 5 days later.
Images from Hospital Stay
Happily Ever After...
The tidy, 2 inch surgical scar hiding under Jimmy's Boston Red Sox hat is the only visible evidence that this now healthy High School Senior had brain surgery four years ago. Jimmy's headaches and vomitting have completely disappeared. Dr. John Ragheb at Miami Children's Hospital made a big difference in the quality of Jimmy's life, and the life of his family. I know personally, because Jimmy Graves is my son.
Happy Ending...
Three Patients Suffering from Untreated Brain Cysts
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Thank our Dear Sweet Lord in Heaven he is Doing so much better. What a very nice hub, and what wonderful and skillfull doctors. God Bless you Dear Heart.
HI! I so appreciate you putting this up. My son has been diagnosed with 2 arachnoid cyst in the same location and has been suffering from nausea and extreme headaches. Thank you for the information!
hi my son has a syst on the side of his brain an we got to have a mri done iam so worred what if its not a syst they found it on a ct scan an the doctor said that u cant tell by that
Hello,
I spend hours online trying to help my son and stumpled upon your son's story. My son now 26 has a 4cm dialation in the occipital region of the right lateral ventricle. He suffers daily and had to leave school and is unable to work. Neuro surgeons are not concerned. He even and a seizure that when we tell them, the don't even respond. My son has given up on doctors and is resigned to the fact that he will be like this for life. Last NS said no need to get follow MRI's! I am glad for your son's outcome.
This is such a wonderful story, my son was born with a rare craniofacial syndrome and has undergone many hours of reconstructive surgery to his face but never to his brain! So glad you had a happy ending, it must have been a very scary time for you. Your son looks like a lovely boy!
I can relate to this. I had a 3 cm arachnoid cyst diagnosed after having had a seizure in a Dr's office. I blacked out totally. 10 years ago. Its now nearly 7 cm. Their telling me to leave it alone. Its on the right side of the right frontal lobe. I'm glad Jimmy had his removed. I used to have migraines all the time as a child. I understand the nausea. twitching, and jerking goes with it too. I'm doing better.. with it. I meditate.They said, I was born with mine too...
thank you for your story. I have just spent all day crying for my nephew as he was told he had a 3 cm cyst on his brain that is causing headache and weakness on his right hand.his Dr told my sister to wait 6 months for another scan to check if its growing . he doesn't want to operate as it may "SPREAD"- which really scares me . what does that mean . why would it spread if it just a cyst?
Thank you for sharing your story. We just found out my daughter has an arachnoid cyst and the neurosurgeon said it is nothing to worry about. She is having headaches, dizziness, and confusion. She is miserable and is missing a lot of school. I am so worried about her.
We live in Tampa and I'm wondering if you recommend anyone in this area or if we should look into going to Miami. I want someone who will take this seriously and help my daughter.
Thank you, again, for sharing your story.











EMPEEN 2 years ago
yOU HAVE GREAT FUTURE, sTYLE OF WRITING IS AMAZING;