Where to Begin...

Sadie post surgery

I've been procrastinating writing this post because so much has occurred in the past few weeks. Where to begin...

I suppose I'll start with the biggest piece of news. In case you hadn't heard, Sadie had a second brain surgery a few weeks ago. During her 6 month post-surgery follow up appointments at Cleveland Clinic, her MRI showed water in her brain cavity that was unable to drain. This fluid-filled pocket (or cyst) was causing pressure to build up and press against her brain stem and other structures in her brain. We saw this clearly on the MRI.

The doctor was not 100% sure why this occured, he said that it is possible that scar tissue from her first surgery formed a membrane over the brain's natural drain causing a buildup of fluid. Apparently this can happen in 5-10% of patients who receive brain surgery.

The doctor spoke about a few symptoms that we might have seen. Headaches, sleepiness, loss of head control, etc. Obviously, Sadie can't tell us if she has a headache, but we hadn't noticed a change in her behavior. We did, however, notice that her head control hasn't been quite as good and she has been excessively sleepy lately - both things that we had been attributing to a recent change in seizure medicines. 

Our pager that provided updates
during Sadie's surgery.

The doctor layed out a few options for treatment. First, we could choose a cyst fenestration - which essentially is a procedure where they go into the brain to lance the cyst and create a natural hole for the brain to begin to naturally regulate the pressure. The second option he offered was a cyst fenestration and shunt. A shunt is an artificial drain which is implanted in the head and drains the spinal fluid into the belly where it is reabsorbed. The drawbacks of a shunt is the probability that it could malfunction, get infected, etc. This occurs quite often. Lastly, he mentioned that some parents may choose NOT to treat the condition and hope for the best. The obvious drawback to this choice is that this condition can be fatal.

Adin and I decided that we were not willing to give up fighting for Sadie, and we would obviously choose to treat this condition. Which left us with surgery or surgery as options - not a great choice. So, we chose to do the cyst fenestration and hope that it works to drain the fluid and create the natural circulation of fluid in her brain. Here are some articles we read which describes the procedure in more detail:

http://cornellneurosurgery.org/pedneuro/endo_cyst.html

http://www.ncbi.nlm.nih.gov/pubmed/3226511

The drawback of the cyst fenestration without a shunt is there is a possibility that it might not work. The doctor told us that it has a 50% chance of working. Sadie will have a CT scan of her brain in six weeks which will show whether the surgery was a success. If the fenestration alone isn't effective, we'll have to consider a shunt.

Doors to the PICU.
I've seen these much too often.

Surgery was performed at Cleveland Clinic by Dr. Bingamin, the surgeon who performed her first surgery. Although this is not what we expected when traveling to Cleveland for follow up appointments, we knew she would be in good hands.

Unlike Sadie's first surgery, this inpatient recovery stay was relatively short. She was discharged in three days. She is now recovering at home and is doing quite well.

Please keep her in your thoughts and prayers throughout the next six weeks as we pray this surgery is successful and she will not need a shunt.

P.S. In our next blog post, I'll fill you in on all the FUN and exciting things Sadie has been doing this summer (trips to the Museum, the bienniel Aicardi Family Conference, etc.)