Upon navigating to Russ' AVM (remember that an embolization involves running through an artery directly to the location of the problem), the doctor discovered that the problem that caused the bleed is not an AVM, but something called a Dural Arteriovenous Fistula (DAVF) which in layman's terms mean an abnormal connection between an artery and a vein in the brain. The easiest way to understand the difference between the two is that an AVF is characterized by a single connection between and artery and a vein, whereas an AVM contains multiple arteries and veins.
The DAVF is very small, like 1/2 the size of the head of your pinky, and the feeder veins were too tiny for the catheter required to embolize them to be inserted (think the width of a strand of hair). So, we could not mitigate the bleeding risk. In addition, the location is also even more tricky than originally thought. Basically the DAVF is very near to Russ' cerebellum, and the cerebellum is where a plethora of critically necessary functions are orchestrated. The medical team talked via phone mid-procedure and agreed that the size and location make the DAVF inoperable.
And before you ask, yes, it is highly unusual to go in for one procedure and come out having undergone a completely different one. However, no one did anything wrong. As we wrote about before, medicine is imperfect at best. Russ had one telling test in November where dye was injected in his head to determine what was going on. Since he was not under anesthesia, a number of variables like movement, respiration and the like could impact the precision of the results. Plus we were looking at pictures on a screen in November, today we had a physician physically navigating to the exact location and taking a good detailed look. The location changed slightly and the specific type of malformation was more exactly identified. It did change things quite a bit, but again, it's all about how you respond to the information you are given once it is known. We did not focus on the fact we were not dealing with what we thought we would be dealing with, we chose instead to figure out how to best deal with what was actually happening. This approach continually serves us well.
And....Enter Plan B.
Since we have OR time and physician time booked for tomorrow, the team zagged instead of zigged, and now instead of removing an AVM/DAVF tomorrow, we are removing Russ' meningioma tumor. This was not on the radar for at least a few months, but it does need to come out, so this ends up working out OK. Our doctor for today said that a massive blood supply was being provided to the tumor, and we already knew it had broken the brain barrier and created swelling, but it was number two in the priority of things. That changed in a good way this morning. So, instead of embolizing a DAVF during today's procedure, our doctor instead quickly pulled the team together and then embolized his meningioma. We are happy to report he was able to successfully embolize close to 100% of the blood supply to the meningioma, so his bleeding risk during tomorrow's surgery is greatly reduced if not eliminated, and we are poised for a successful excision.
We will also begin an alternative treatment for the DAVF since surgery is no longer an option. A very specific and targeted radiation treatment will be employed to "zap" the DAVF. We will know before we leave the hospital in a few days what exactly this means and when treatment will begin, It will most likely occur in the next couple of weeks. We just learned of this today, so we have some research, learning and talking with doctors to do in order to become equipped with the knowledge we need to understand this. As of now, we know:
- We do not have to have high risk surgery and the unknowns that come along with it (ultimately good)
- Radiation treatment is non evasive, easy to execute and endure and highly successful with Russ' type of DAVF (super duper good)
- Without a surgical excision, we will be at risk for a bleed until the DAVF is completely neutralized (less than good) Basically, no longer an outcome of "one shot and it's over."
- Targeted radiation can take from 3-4 months, up to one year to be completely effective (sure wish it were faster!)
- There will be one radiation treatment where the DAVF is zapped from multiple strategically targeted angles. After that, we watch and wait.
All in all, we are confident in this outcome as it will speed up Russ' overall healing. We originally anticipated the meningioma to be 60-90 days out from now, and we have 6-12 months of healing from his final surgery. Now, we have the final surgery tomorrow, and a good possibility of the non-invasive radiation being completely effective in a relatively short period of time. So, sunny side up means we start the overall healing process timeline earlier than we thought. On the risk side, we have to live with the possibility of a bleed for longer than we anticipated. However, the radiation treatment has a high possibility of starting to work quickly, so the risk/benefit seems logical.
We still need your healing thoughts and prayers tomorrow, the day of Love (how appropriate) as we undergo the removal of the meningioma. Although it is not the surgery we expected, it is still brain surgery nonetheless.
Thanks to my cousin Cari, Russ has his own hashtag now. Go Rusty Gooooo #GRG
Love to all 💜