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https://www.givesendgo.com/jacqsbrain I gave birth to my third child on June 24th. River's birth went really quick once we got to the hospital. I was only in the birth room for 4 minutes before he was born. They tried to do a covid test but quickly realized there was no time! There was no time for an iv either. He was born healthy even though they checked his sugar for the first day since he was low birth weight by one gram. Everyone was healthy and we were released on schedule the next day.
My mom and dad came to visit me and River at home, the day after my release. I was experiencing some confusion and couldn't make decisions like deciding where pizza could be set or where flowers should go. I assumed it was likely sleep deprivation. I also had a moderate headache (I normally have at least a mild headache all the time, and have for as long as I can remember).
Later that day after my parents had left, my headache got worse. I took some more advil and tried to take a nap with the blacklight curtains closed. Andrew brought up a hot pack for my forehead. It felt like a migraine coming on but I wanted to sleep as I hadn't got a lot of sleep still. Sometimes, caffeine helps my bad headaches but I wanted to sleep and I had used up all my mountain dew when I was on nightshift a few weeks previous.
I woke up at around 6:30 pm and we decided to call the doctor as my headache had worsened and that is what my discharge paperwork said to do. We weren't really expecting the on call nurse to say to go to the ER for a headache, but she did.
When we got into the ER, they saw me right away since it was so soon after birth. They said my blood pressure was really high and admitted me. It got up to 160 over 99 at one point. I was surprised because I thought I would be in the waiting room for a few hours and maybe get a pain prescription and go home.
They had me go right to a room because they said otherwise people in the waiting room would be mad because they had been there for over 3 hours. They gave me a shot with pain meds but my blood pressure and headache kept getting worse. They said they were going to start me on Magnesium for pre-eclampsia and that a stroke was the main concern at the time. We had River with us and they were able to get him a visitor bassinet. My milk started to come in.
The doctor came in and talked to me around midnight and she asked me to recount the day. When I told her about the confusion I felt she asked if I wanted to get an MRI. I asked her what she suggested. She said it was up to me and we could wait until the morning to see how I was doing then. I said we might as well do it right away because I figured I might as well get it over with so I could sleep.
After they rolled me down to the MRI machine, I found out that the MRI was with contrast which the nurse had just told me I should be good to feed River because it was probably without contrast. I asked the MRI tech and a really nice nurse ended up bringing me a pump and I pumped about 2 feedings worth of milk for River before going into the MRI because the contrast meant I had to pump and dump for 24 hours. She assured me that she put an order in for donor milk so River would be ok.
After my MRI which was painful, I assume because of my headache, the tech said he hoped I got better. I thought that was weird because I assumed that we wouldn't find anything on the MRI. The MRI felt like going through a carwash.
Later, my ob doctor came in and said they saw a non-cancerous epidermoid cyst/tumor on my brainstem. She said that she did not study the brain extensively in school and that an Neurosurgeon would see me later during the day after they reviewed it.
Andrew left to run some errands and get some groceries for the kids. While he was gone, the neurosurgeon visited and sat down right away. Then his assistant came in and I remember thinking it was not great. He told me that the tumor was good sized and that it was compressing my brain stem and it would have to come out in a few months and asked if I had any questions. I asked a few but he said I should just relax and enjoy my baby and make an appointment in a month to discuss surgery.
After being referred to the epidermoid society (see
http://epidermoidbraintumorsociety.org/epidermoid-101/ for more information), I connected with their facebook group and was advised to see a surgeon that specialized in the brain stem since the two opinions I had already seen had been general spinal/neurosurgeons. Apparently this tumor was so rare that most neurosurgeons would only see a few in their entire career.
I spent the next few months researching this tumor and outcomes and learned that the first surgery is critical and the skill of the surgeon with this type of tumor is really important. Because of scar tissue, the first surgery is the only one that has a chance of 100% removal. If any remains, there will be regrowth and more surgeries will be needed. MRIs would be required to monitor the tumor every 6 months. There is also a lifetime max of 3-4 surgeries and there is no way to know how fast regrowth would occur. It could be back to the original size within 5 years.
I am currently mostly non-symptomatic but complications from tumor growth and from removal were similar. Loss of balance, facial droop on the left side, difficulty swallowing, damage to the left vocal chord, vision in the left eye and particularly hearing in the left ear.
I heard of this doctor in North Carolina, Dr Fukushima (
http://takanorifukushima.com/). He has done at least 390 epidermoid surgeries. I had an appointment at Mayo clinic to see DR Link who later told me he had done around 50 of these surgeries. We traveled to see Andrew's family in Ohio hoping that Dr Fukushima would see me. Right as we were about to go home disappointed, we learned that he had just arrived from doing surgeries in Japan and could see me in a week. We stayed another week and left at 7 am to see him and got back to where we were staying at midnight after the appointment. We had some wonderful friends in Columbus who watched Estrella (5) and Rainier (2.5) while we made this trip. River was allowed to come with us as he was breastfeeding.
Dr Fukushima said that my epidermoid was large and would start affecting me in 6-12 months. In 5 years he said I would be in a wheelchair if I did nothing. He said at this point, I was still a candidate for keyhole surgery which would be a far better recovery than a craniotomy. The other 3 doctors I saw including the doctor at Mayo wanted to do a craniotomy. One of the doctors at Mayo said upon hearing that Fukushima (who he asked if I had actually seen Fukushima and wanted to know what he said) said that the keyhole approach would be impossible. However, he acknowledged that Dr Fukushima was best in the world and said that he would see me if I needed follow up care if I chose to have surgery with another surgeon. Dr Fukushima has trained half of the skull based surgeons in the world and has invented the tools for his surgery technique which involves a microscope.
We booked surgery with Dr Fukushima for September 27. We have a Give send go site set up to help out with travel expenses. We have learned that while DR F is in network, the hospital (Wakemed) is not. The surgeon's office is applying for GAP coverage to make it in network since we maxed out our out of pocket this year but only in-network. We decided that since DR F is the only doctor to have done so many successful surgeries on this type of tumor it was worth going to him and seeing if we could have 0 deficits from surgery and a possibility of only needing 1 surgery. We are taking the risk large hospital bills if the GAP insurance does not work but I want to know that we did our best and did whatever I could to ensure a good outcome. I have a 50% chance of full removal (depends on whether the tumor is "sticky"). There is also a chance of hearing, vision and balance issues. Recovery is 12 weeks and I am lucky to have 60% pay coverage for this time through work but I am the sole income for our family as we recently relocated to Minnesota for our job and my husband is staying at home with the kids due to the price for daycare and the rotating shift nature of my job.
Anecdotally, every survivor of this tumor I have talked with has told me that I will likely experience increased tiredness for about a year post-operation.
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