Two Week Update

Brain Surgery

Two weeks ago today on August 5, Steve and I arrived at Chandler Regional Medical Center in the Phoenix area a little before 5 am to get checked in for surgery. I met the surgical team including the surgery nurse, neurophysiologist, and anesthesiologist. I also got to meet with Dr. Almefty one more time. My surgery was almost 14 hours long! As Dr. Almefty said, "That is complicated tumor you grew there." As promised they took as long as they needed to resect as much tumor as possible.

Post Surgery

I was in ICU for two nights and a regular room for one. Actually, I was downgraded to regular room status after the first night, they just didn't have a room to put me in. Everyone was really pleased with my status even though I personally felt like I'd been hit by a bus. My ICU nurses, Alana and Lexi were amazing, especially dealing with my post surgery nausea and vomiting (not fun). The hospital was really clean and comfortable and the food was not terrible! I was lucky to have surgery the day I did- it kept me out of the 118 degree Phoenix heat.

Mobility

The first time I got out of bed, I was really off balance. I felt like I had poor control of my trunk and like I was tilting left. It was a wild feeling and I'm glad it passed. Despite feeling like crap, I was a good patient and I got a few good laps around the halls and tried to sit up in my chair for meals. Since coming home, I'm gradually progressing from using a front wheeled walker for safety to getting around all on my own. I'm feeling a little wobbly because of my double vision but getting better everyday. The other morning, Steve took me for a short outside without the walker and it was nice to get some fresh air and feel more human! We had a bit of break in the heat but unfortunately it is climbing again.

Sixth Cranial Nerve Dysfunction

Unfortunately with extensive resection came the consequence of damage to my 6th cranial nerve. This nerves comes off the brain stem then exits skull to provide innervation to the lateral rectus muscle which pulls my right eye outward. During the surgery, my sixth nerve was really entangled in the tumor and though Dr. Almefty had a good line of sight on the side of the nerve on the brain stem, he had a hard time discerning where it exits through the skull. Without the function of my sixth cranial nerve, my right eye turns inward and I have double vision which is worse when I look to my right. We are not clear on the integrity of this nerve but we plan to give it up to 9 months to see if I have any return in function.

In the meantime, I saw an ophthalmologist to determine if prism lenses would be helpful. Due to the severity of my double vision, they are not really an option as they would distort my vision too much and I'd lose my acuity. He recommended patching one eye and switching the patch daily while also giving my eyes some opportunities to try to work together in order to help my brain calibrate the change. If the problem persists about 9 months out, I will be eligible for strabismus surgery which better aligns the eyes and eliminates a lot of the double vision.

The next step was to see an optometrist for a new glasses prescription which I haven't had in a several years. My left eye is actually not much different than my last prescription but my right eye has a worse astigmatism. My new glasses should arrive today! In the meantime I'm mostly patching the right eye (I found some fun adhesive patches on Amazon) or trying to use my eyes together to allow my brain to cope with the nerve damage.

Other Complications

A minor complication I ran into was an infection in the pin site at the back of my head where the external fixator was placed in order to keep my head stable during surgery. Last Monday, I saw Dr. Almefty. He examined the wound, cleaned it really well and wrote me a prescription for an antibiotic to take for a week. I finished that prescription yesterday and it is now looking much better. He also said in all the years he's done this, he's never seen anything like that but I guess there is a first for everything. On the other hand my surgical incision in healing beautifully! The incision was closed with a combination of internal stitches and external surgical glue. Also, the hair loss is minimal and when my hair is down, you cannot see the incision at all!

Another minor issue I'm having is is parasthesia on the right side of tongue. I feel like it got stuck coming out of dental numbing. It is really minor and most times I don't even notice it. Aside from those few things, I'm healing well and progressing daily.

The last minor problem I'm dealing with is numbness of my scalp. This one is a head scratcher, even to Dr. Almefty. We don't know what caused it. I can barely feel like back of my head, especially on the left side. This will be another one of those things we just wait and see on.

Pain Management

Initially the pain was not good. I was on some combination of percocet, tylenol, fiorect, a muscle relaxor, morhpine and a steriod. I was sent home with a lot of pain meds but over the last several days I've transitioned off everything aside from extra strength tylenol and I'm in need of a lot less pain meds in general.

Overall the types of headaches I was having before surgery have been eliminated as far as I can tell. As you may recall, activities like laughing too hard, coughing, sneezing, and straining would make me feel like my head was going to split in half. Last night, I was "doom scrolling" and watching Instagram reels. A really funny video came up and it was the first time in MONTHS I was able to tolerate laughing so hard I cried without being in pain! It seems small but it is a huge victory to me.

Neurosurgery Follow-Up

Yesterday, I had my post-surgical follow up with Dr. Almefty. There were two primary findings we discussed after pathology and repeat imaging:

1. WHO Grade 1 Meningioma - my tumor pathology confirmed my tumor is grade 1 (grades go from 1-3) meaning my tumor is slow growing and does not have aggressive tumor properties. He is sending the sample out for further genetic testing as well. Right now, there is a lot of research being done to determine other treatment options for these types of tumors. Know what genetic properties my tumor has may make me a candidate for other treatment options in the future.
2. Residual tumor- What remains of my tumor are two small pieces. One more superiorly which is wrapped around my posterior communicating artery and another and the very bottom of my skull. I've officially decided to keep calling the top piece Monica and have dubbed the bottom piece Phoebe. These pieces are small and my options are to:
   1. Watch and wait which involves a repeat MRI in 3 months then another in 6 months after that to establish growth rate. Then repeat MRIs every 6-12 months. A lot of times they show no growth after surgery. Should the pieces grow or become symptomatic, other interventions can be considered.
   2. Radiation is option because now that my tumor pieces are so small and asymptomatic they can radiate them so that they do not grow again. However, radiation has its own side effects which include damage to healthy brain tissue.
   3. Surgery, which is exactly what is sounds like- going in via different surgical approaches to remove or further reduce the size of the tumor pieces.

My decision is to just watch and wait. I have the advantage of knowing my tumor is Grade 1 now that I've had surgery. Usually, grade 1 meningiomas are really slow growing and will likely not cause me any major issues as long as they remain small. Of course, if the repeat scans start showing changes, then we can discuss radiation and surgical options.

Onward

Steve, Finnley, and I are staying down the Phoenix area until the end of the month. Everyday I feel little better and more and more like myself. Shout out to Steve and Jessica for taking awesome care of me down here. Thanks so much to everyone who has reached out via text or comments! Even if I'm not super responsive the well wishes have been very appreciated. I'm also so thankful for the sweet gifts I've received in the forms of flowers, a stuffed sloth and balloon, treats, meals, cards, and even a beautiful quilt! All these gestures have really put a smile on my face.