Monday, May 20, 2019

One Year Post-Brain Surgery

October 2017: Cavernous angioma diagnosis.
February 2018: pregnant with 4th child!
April: craniotomy and stroke during surgery. Awoke from surgery with left side hemiplegia, vision loss, and central nerve pain.
May: Three weeks inpatient rehab.
June - Sept: Returned home to family, unplanned appendectomy, weekly outpatient rehab (PT).
Sept: Baby Ruthie arrived safely, completing our family of 6!
February-April 2019: Intensive outpatient rehab (functional neurology).
April: Walking, driving, and caring for the kids full time again. Reduced hemiplegia. Some vision restored. Central nerve pain still strong. More therapies to come as time and money allow.


Songs:
Stand In Your Love - Bethel Music & Josh Baldwin
Survivor - Zach Williams

Monday, April 23, 2018

Steph's brain update: moving forward with surgery

At the time of the last update we had recently learned that I have a cavernoma in my brain located on/near my visual track. A cavernoma is a benign brain tumor made up of blood vessels that seep blood, and the bleeding near my visual tract causes vision loss. In December, we knew that the cavernoma had bled once and that my risk of re-bleed was said to be low (6%). We were told the tumor was inoperable due to location. When I wrote the last update, we were waiting to see if my vision would return to normal as my brain healed from the initial bleed.

Shortly after I posted that update I had another bleed, and that bleed further affected my vision. Around that time we were meeting with additional specialists trying to gain more understanding of our options. We met with a neurointensivist and a neurosurgeon, both here in Seattle. The neurointensivist recommended a wait-and-see approach, and the neurosurgeon recommended surgery to have the tumor removed. We were surprised to hear this, as we were originally told it was inoperable. Unfortunately, the risk percentages we were given for surgery were not ideal. We were quoted a 30-40% chance of additional temporary or permanent vision loss as a result of surgery. This was unsettling, but we were still considering it. Given my age, coupled with the 6% chance of another bleed each year (and the fact that I already had 2 bleeds back to back), statistically I will see more bleeds in my lifetime. The two bleeds to-date have caused increasing vision loss, and there is no medication that can be taken to prevent the bleeds, or prevent or cure the vision loss. 

Unsure of what to do next, I joined a cavernoma support group on Facebook and started researching who the "best" surgeons are for this type of brain tumor. My research consistently led me to Dr. Lawton at Barrow Neurological Institute in Phoenix, Arizona. As providence would have it, the Institute offers a Second Opinion program which I eagerly took advantage of. I submitted my scans and some background information and waited to get my PDF report back with their opinion on my condition. Instead, I got a phone call from Dr. Lawton himself! After several long phone calls with Dr. Lawton and one of his attending surgeons, more research, and prayer - we've decided to move forward with surgery to remove the tumor.

{ when and where is the surgery }
Surgery is set for April 26th in Phoenix. I will be in Phoenix from April 24 - May 1st. We have friends in Arizona helping us with transportation as well as housing us while we are there prior to surgery (thank you Elders and Andersens!). The two days leading up to surgery I'll have an echo on my heart, an MRI, blood work, and a meeting with the surgical team. Surgery will be the 26th and take 8 hours. I'll spend the weekend in the hospital being monitored, and then if all goes well I'll be released on Monday or Tuesday. Recovery at home will depend on many factors, but we are not anticipating needing any physical therapy at this time.

If surgery is successful the cavernoma will be removed, I'll be tumor free, and continue on with my life. It's unknown in my vision will return to normal, but we are hopeful that it will!

{ about the surgeon and the surgical method }
Here are some of Dr. Lawton's profiles:
https://www.barrowbrainandspine.com/physicians/dr-lawton/
https://www.barrowneuro.org/get-to-know-barrow/person/michael-lawton-md/
Meet Dr. Lawton: https://youtu.be/p7jH7TiFLLQ
Dr. Lawton with Sharon Stone: https://youtu.be/XOB3v-cLfuM

The specific method used is called the supracerebellar-infratentorial method. With this method, the surgeon will go through the back of my head at the base of the skull and work through the natural pathways that exist in the brain (instead of aggressively cutting through brain tissue). The surgical footprint of this method is small, and the success rate is high. I have been quoted a 98% chance of a successful surgery (with no additional vision impairment!). Here is a video of this method being performed: https://youtu.be/6ogzYtINYX8.

{ surgery while pregnant } 
Earlier this year we found out that we are expecting another child - a girl! - due this fall. We are overjoyed (!!!), but this does add a level of complication to the surgery. Surgery was originally considered for mid-March, but news of this pregnancy delayed surgery to April so that I will be safely in the 2nd trimester. My OB and neurosurgeon are in agreement that of all the options, it is actually safest for me to move forward with the surgery at this time. Now that I am pregnant, there is an associated risk of another brain bleed caused by hormones that are heightened during and after pregnancy. So the known risk of surgery in the second trimester is much preferred to the unknown risk of complications from another bleed. The surgeon and his team will be making adaptations to pre-op procedures as well as the surgery to accommodate for the pregnancy.

And no we weren't trying to get pregnant, yes we know how babies are made, and yes this will be our last baby :-)

{ prayer requests }
-Safe travel to and from Arizona
-A successful surgery with no complications and minimal recovery time
-Provision for the kids while we are gone (childcare, sense of normalcy) and extra blessing for those stepping in to care for them!
-Healthy pregnancy

{ how we are doing }
We both feel that the added element of a pregnancy has forced us into a posture where we are completely trusting the Lord to lead us through this chaotic time. Before, there was still some semblance of us trying to control things - now, we are just constantly looking to the Lord to see what He is doing next. This is truly a blessing, because we know everything God does is for His glory and our good and the safest place for us to be is waiting on Him and his direction.

As we near the next step in this cavernoma journey, many of the sentiments I shared at the beginning are still the same. I still believe God is good and in control, and I put my hope in Him. I still don't know why he allowed this to happen, but I still believe he can heal me at any time by any means (including this surgery!). I also don't know why he has revealed a potential cure when we were originally told it was inoperable, or why he has blessed us with another child - we don't deserve either and are in awe of his provision to us! It remains true: "The Lord gives, and the Lord takes away; blessed be the name of the Lord".