13 Year-Old Back to School One Week After Rare Brain Cyst Surgery

Amazingly 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

side view of the intraventricular brain cyst.  Looks like a black egg...
side view of the intraventricular brain cyst. Looks like a black egg...

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

Detailed view of Jimmy's cyst from the top of the head.
Detailed view of Jimmy's cyst from the top of the head.

Miami Children's Hospital

Miami Children's Hospital
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

Jimmy Graves was prepped for brain surgery
Jimmy Graves was prepped for brain surgery
The pediatric nurse dressed for Halloween, as did the children on the Neurology ward.
The pediatric nurse dressed for Halloween, as did the children on the Neurology ward.
Jimmy is visited by a therapy dog
Jimmy is visited by a therapy dog

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...

My son and I at Tampa Airport, June 2009; almost 3 years post brain surgery
My son and I at Tampa Airport, June 2009; almost 3 years post brain surgery

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Comments 17 comments

EMPEEN 6 years ago

yOU HAVE GREAT FUTURE, sTYLE OF WRITING IS AMAZING;


my daily dish profile image

my daily dish 6 years ago from Beverly Hills, Florida Author

thank you. I am very glad that we had a great outcome. :)


stars439 profile image

stars439 6 years ago from Louisiana, The Magnolia and Pelican State.

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.


Sara 6 years ago

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!


my daily dish profile image

my daily dish 6 years ago from Beverly Hills, Florida Author

Sara, keep your faith and stay vigilent for your son! Get yourself the BEST doctor and do what ever it takes to keep him well :)


allie 5 years ago

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 and the doctor said that u cant tell by that


my daily dish profile image

my daily dish 5 years ago from Beverly Hills, Florida Author

Allie,

I am sorry about your son's condition. Please have faith that God is at your side, and will help calm your fears and deliver your son safely. How did you find out your son has a cyst? Was he having symptoms? Be strong for him and learn everything you can about his condition so you can make rational, informed decisions. Good luck and God Bless.


Carol Charla 5 years ago

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.


jackie.t profile image

jackie.t 5 years ago

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!


Donna Suthard profile image

Donna Suthard 5 years ago

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...


Suz 4 years ago

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?


Susie 4 years ago

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.


my daily dish profile image

my daily dish 4 years ago from Beverly Hills, Florida Author

I'm sorry to hear about your nephew. There is hope. Most doctors will be conservative. The most important thing to do is research, research, research. Learn as much as you can about his diagnosis so you can understand the process. Knowledge is power.


my daily dish profile image

my daily dish 4 years ago from Beverly Hills, Florida Author

The size and location of your daughter's cyst means a lot. Also, the severity of her symptoms. I would recommend studying and researching similar cases to hers. Using her diagnosis, cyst location, size and her age, do some research of medical journals so you can learn treatment options (if any). When my son was first diagnosed, there were so many questions. I spent weeks relentlessly searching for similar cases. I paid for subscriptions online to medical journals, etc. I called my former employer (a neurologist) and asked for his help, etc. I printed out every journal article with similar attributes to what my son was having and I hilighted sentences that pertained to treatment options, outcomes, etc. With that information in hand, I took it with us to his doctor appointments and shared the info with the doctors.

Don't stop looking for solutions. You are paying for the doctors knowledge, etc. They will not know your daughters case unless you share every detail with them. Make sure you document EVERYTHING. Every symptom, the time, the length, etc. If she has any major symptoms, take her to the Emergency room. Then make sure you request her medical records. Keep everything! You are responsible for her care, so share as much as you can with her doctors.

I was very impressed with Miami Childrens Hospital. Being that you are in Tampa, maybe All Childrens Hospital is now affiliated with some good pediatric neurologists. Do some research on the best pediatric neurologists and pediatric neurosurgeons in Florida and start there. Dr. Ragheb )in Miami) was the very best pediatric neurosurgeon back in 2006.

I hope this helps and that you are arming yourself with information! Stay strong for your girl and keep researching. Don't stop!!! Good luck and let me know if you get any good feedback or news on your girl. My son is doing great.


Hyphenbird profile image

Hyphenbird 4 years ago from America-Broken But Still Beautiful

Your Hub is very much needed and I learned so much. Thank you for this. A friend has been having problems and I am going to suggest a brain scan now. Her symptoms fit this diagnosis. Thank you!


Ryan 3 years ago

I usually don't leave comments but I am actually going throughout the exact same thing. I have an arachnoid cyst which has just started to give me symptoms in the past two years but I was also told to watch and wait, that it was an incidental finding, and that it was there since birth and is unrelated to my vomiting nausea and everything else I have been feeling. I know how you feel. I'm 34 so I can only imagine what he is going through but I am praying for him and I am glad to hear his surgery was successful. I still have to have miine and I have been so worried. I had surgery on a cyst in my arm yesterday. Weird stuff has started happening with me like this for the past two years. My skin has also had a lot of sores. I tested negative for mrsa, aids and syphilis so I don't know what is going on. Anyone else besides me and this guy having brain cysts lately?


mccannenator 19 months ago

I too have an "incidental" golf ball size cyst in the white matter of my left temporal lobe. The symptoms became to severe to ignore at 37 years old. Headache, nausea, seizure looking episodes, decreased awareness episodes. Weird twitching jerking pain and right side weakness, clumsy balance walking issues. Huge short term memory problems. They just want to give me anti anxiety med and headache mess and wait and see. I am bread winner engineer and mother of two, I love my job and need to be myself again.

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