Craniectomy, Not Craniotomy

"What do you mean part of my skull is missing?"

So at my appointment today we met with a new nurse practitioner; discovered a vital piece of information.

I did not have a craniotomy, I had a craniectomy. The portion of the skull removed for my surgery and the intense pressure my brain had been under necessitated leaving that portion of the skull off and closing the dura, the lining of the brain,  applying a seal over the top. No mesh, no titanium, nope something called DuraSeal. A synthetic covering that bonds over time with my skeletal tissue. Important information a little more intense than not lifting certain weight or exerting myself. A blow to my head can cause severe trauma and permanent damage. So, that sounds fun. Essentially part of my skull is missing and I am now Cousin Eddie from Christmas Vacation.

I felt like screaming that this was information that would have been useful to me six months ago. So incredibly frustrated that not all information is clear and consistent. We also discovered that I should have been having copies sent, in writing, of updates following appointments. I will not being seeing the first nurse practitioner again; I will see the second. She actually communicates clearly and doesn't blow me off or act like I am inconvenient. I know my advocate, my husband, was much happier following this appointment.

I am breathing while we wait for final results on my scans. We were also not told of a new residual tumor that had grown since my June appointment. The one nurse practitioner had reported that my scan "looks clear". Apparently she didn't bother to read the radiologist report describing the location and measurements of the new tumor. So, again we wait. Six months until my next scan, unless symptoms begin to interfere with my quality of life.

We've got this. Just waiting now. Praying and holding on to one another is where we are. Honestly I prefer the emergency surgery method, no guess work, no waiting. Warriors in our hearts every day! God bless and keep you.

 

DuraSeal

DuraSeal is a synthetic absorbable dural sealant, which can be used to support primary dural closure. As described in the manufacturer's insert, DuraSeal is an US Food and Drug Administration (FDA) approved product that is indicated as an adjunct to sutured dural repair during cranial surgery to provide a watertight closure. More recently, it has received FDA approval for use in spinal surgery. It contains PEG, a non-toxic and biocompatible polymer. When water-soluble functionalized PEG is mixed with trilysine (a small molecule amine with reactive linkages), the solutions combine to form the sealant gel that can be sprayed or layered onto the site of dural repair. The cross-linking of PEG and trilysine molecules creates a 3-dimensional hydrogel structure that gradually hydrolyzes (water gradually degrades the cross-linked bonds in a uniform fashion just like absorbable sutures). According to data provided by the manufacturer, it is cleared from the site in 4-8 weeks, which is enough time to allow healing.

Directions and precautions include its avoidance with other hemostatic agents or sealants and the requirement to achieve adequate hemostasis before its application. The DuraSeal manufacturer's insert also includes “contraindications, warnings, and exclusion criteria” concerning its use. One major warning states, “Do not apply DuraSeal hydrogel to confined bony structures where nerves are present since neural compression may result due to hydrogel swelling. The hydrogel may swell up to 50% of its size in any dimension.” Contraindications to its use include a history of allergy, penetration of an air sinus, renal/hepatic/immune dysfunction, head trauma, and infection; it is also to be avoided with hydrocephalus, a ventricular drain, or lumbar drain.