Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Two Big Milestones…and a Mystery

on September 2, 2013

Joscelyn’s last surgery to remove malformed brain tissue from her left hemisphere was on February 27th, 2013. 

You can see the before and after image here:


As you can see in the “before” image, the majority of her left hemisphere had already been removed. The tiny highlighted portion which was taken in February measured approximately 1cm x 1cm but was still large enough to cause her to seize uncontrollably. Since this surgery, we have seen (almost) no signs to indicate that she is having seizures. (More on this later)

Many people are curious as to what fills the space in the cranial cavity after hemispherectomy. In early experiments with the surgery, doctors thought they would need to fill the space with something and tried all sorts of filler, including sterilized ping pong balls!

Eventually, they discovered that the cavity fills with cerebrospinal fluid, the same fluid that cushions the brain normally.

Cerebrospinal fluid is mainly produced by a part of the brain called the choroid plexus, in the lateral, third and fourth ventricles of the brain. Any extra fluid produced is reabsorbed into the bloodstream through arachnoid villi, which are located on the brain. 

Boston Children’s Hospital made a great video explaining this process here: 

 One of the potential side effects of hemispherectomy surgery is hydrocephalus (“water on the brain”): a dangerous buildup of cerebrospinal fluid within the cavities of the brain. (This makes sense when you consider that the surgery removes at least some of the villi responsible for draining the excess fluid.)

Some of you may remember that after Joscelyn’s second surgery in July of 2012, her brain proved to be unable to effectively process the amount of CSF (cerebrospinal fluid) her body was producing. A shunt was installed to drain the excess fluid from her brain to her abdominal cavity via cathether. This shunt was later removed in a subsequent surgery, when it was discovered that more malformed tissue on her left hemisphere needed to be removed. 

Since that time (and by no reasonable explanation whatsoever), Joscelyn has managed to process the excess CSF fluid on her own but we have continued to be on alert for any potential signs that she might be developing hydrocephalus. (This will require life-long diligence on our part, as hydrocephalus can develop at any time.) Signs of hydrocephalus include:

  • Abnormal enlargement of the head
  • Headache
  • Nausea or vomiting
  • Fever
  • Delays in walking or talking
  • Problems with previously acquired skills, such as walking or talking
  • Blurred or double vision
  • Unstable balance
  • Poor coordination
  • Irritability
  • Change in personality
  • Problems with attention
  • Decline in school performance
  • Poor appetite
  • Seizures
  • Sleepiness
  • Difficulty remaining awake or waking up

Unfortunately, I’m not bringing all of this up simply because it’s Hydrocephalus Awareness Month

About three weeks ago, Joss began vomiting intermittently. At first, we hoped it might just be the normal tummy upset that often strikes little ones but since it has continued, we have to treat it as a sign that she may be having trouble processing the excess CSF again. 

We are headed back to the Children’s Hospital this week for testing. 😦

While it’s possible that the vomiting may be seizure related (especially since Joscelyn has had some seizures in the past that presented with vomiting) it seems far more likely that she is having pressure related issues.  So, for lack of any definitive evidence to the contrary, we are continuing to proclaim the hemispherectomy surgery a success and to celebrate six months of seizure freedom. 

Many of you know that we also began weaning Joscelyn from her anti-seizure medication a few weeks ago and might be wondering if the vomiting is related to that process. Joss began vomiting before the weaning process began and the reduction of medication hasn’t increased the frequency of her episodes, so as of right now, we don’t think the two are related. If the vomiting was due to seizures, it stands to reason that the number of episodes would have increased as her medicine was reduced and that has not been the case.

She is now completely weaned from all of her anti-seizure medication and we’re left with a bit of a mystery.

In all other respects, she seems fine. She is progressing very well in therapy and overall, seems very happy.


We are hoping to avoid having a shunt, since they can be quite problematic and our sweet girl has undergone so many surgeries already but we will, of course, do whatever is ultimately best for her. 



As always, we welcome your prayers and good thoughts! Thank you!


12 responses to “Two Big Milestones…and a Mystery

  1. Steve says:

    As always you are doing such a great job of spreading awareness. I learned so much from the video and am so sorry to hear about Joscelyn’s recent problems. I need to check your blog more often instead of just FB . You know Joss is always in my thoughts and prayers as are you and the rest of the family. Are you going to Boston for her checkup? I hope and pray everything goes well there. .Let me know if there is anything I can do for you while you are gone. All my Love and Prayers to all of you.

  2. Cynthia Greenly says:

    My thoughts and prayers are always with our Princess Warrior and her family!

  3. Jean Hillebrandt says:

    My heart and prayers for you, Joss and all the family ❤

  4. Mariellen Barr in PA says:

    Praying this is not CSF related. But, Lord, if it is, give Joscelyn the absolute best care to treat the problem. I pray the doctors would get a definitive answer either way. I pray, Lord for your hand to be seen and felt in the midst of this mystery. God bless you and your sweet princess.

  5. Carolyn Alverson says:

    Thank you so much for the update. It helps to be reminded how best to pray for her and for your family.

  6. Patricia Ferguson says:

    Dear Jennifer:
    I have been unable to get into facebook for weeks and was unable to reach you.I didn’t have your phone #. I am on facebook could you make me your friend please. I am so so sorry that Joss is sick again. She will be in my prayers as all of you will. I have missed talking to you and reading your updates. I sure hope Joss doesn’t need a shunt. My e mail address has been changed too as I was hacked. All my love Pat Ferguson

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