Johns Hopkins Neurosurgery Department Consult

Today, I met with the head surgeon at the Johns Hopkins (JH) neurosurgery department, specifically the brain tumor center. Let's call him Dr. O. He and his nurse were amazing at fitting me in within 3 hours of seeing my medical records. I booked ass to the Baltimore campus with 45 minutes notice.

Alright, so how do I organize all this info... It's going to be a lot....

Dr O agrees that the size and appearance of my tumor is consistent with a glioma, probably stage 2 or 3, he's on the fence about which. He recommends being aggressive and acting with surgery in the next few weeks. The longer we wait, the more likely that it will become more aggressive and harder to treat. They actually have an opening on Wednesday, June 12th with a full day of pre-op testing on Tuesday. That is how urgent they feel my case is. They don't need any more imaging or other types of testing.

The surgery is called a craniotomy. First, they take a detail MRI immediately before the surgery. They shave a strip of my head and make a 4-5 inch incision. They will use intraoperative MRI to guide their tools. They'll remove part of it to exam under a microscope for initial impressions of the content. Then they will "debulk" the rest of the tumor as much as possible while maintaining the surrounding brain tissue. Official pathology takes 2 weeks, but they may have some idea of malignancy during the surgery. Then, they'll put a plate over my skull bones and stitch my skin. Thankfully, most patients don't have much pain because there aren't any nerve cells below the skin. So I would spend up to 24 hours in the ICU unit, my family can visit about 30 minutes after I wake up. Charles can't stay with me in ICU overnight. After 24 hours, as long as everything goes well, I'd be transferred to the neurosurgery floor for a minimum of 3 days. Charles can stay with me there and family members can come and go for visits. After I'm released, the recovery will take 4-8 weeks depending on how the surgery goes and my individual recovery process. If the tumor is malignant, we would discuss further treatment (radiation/chemotherapy) after the official pathology report. Treatment of that type wouldn't start for 5-6 weeks after surgery to allow for my body to heal from the surgery.

Recovery. I would need to take an antiseizure medication, Keppra, a few days prior to and for a week after the surgery to prevent seizures. These meds can cause fatigue and memory problems. One of my current medicines compounds the possible side effects. From the location and appearance of the tumor, it is possible the removal of it could cause temporary "motor apraxia on the left side", meaning temporary paralysis or partial paralysis on the left side of my body. Depending on if the tumor is intrinsic (infiltrating into other brain tissue), there is risk of cutting off blood vessels to nearby tissue, which could cause mini-strokes and all the effects of a normal mini-stroke. About 40% of glioma patients experience a blood clot later in life.

In terms of immediate recovery, I would be released in 3 days assuming all goes as planned. I would need 24 hour company for the first week. She said "not eagle eye, in your face company, but at least someone who is within earshot and not responsible for the kids." Luckily, I'll have minimal pain and most likely will not need pain meds after a week. The longest part of recovery is regaining my stamina. I'll tire easily, very easily. I should be sleeping as much as I need to and expending little energy, doing minimal amounts of stairs and walking. As long as I continue to have no seizures, I will be able to drive after 2 weeks. Total recovery will be anywhere from 4-8 weeks but they say to count on 8 weeks to cover all bases.

If the tumor is grade 2 but no radiation or chemo are necessary, we would observe with MRI every 6 months. If it is grade 3 but enough was removed that I wouldn't need radiation or chemo, we would observe with MRI every 3 months. Treatment for a more malignant tumor was not detailed in depth.

This team, which comes highly recommended from several sources, has an opening for me next Wednesday, June 12th. I would have pre-op Tuesday, starting as early as 5:30am. They need ekg, chest xray, bloodwork, and detailed MRI. Since I would be a last minute work in on the schedule, I get last pick of times so I could possibly be there allllllll day. Then I'd have to be there super early the next morning too.

Local resources. Family members and friends over the age of 16 who would like to come visit me in the hospital are allowed. One family member is allowed to sleep on the pull out bed in my private recovery room. There are hospital owned townhomes down the block that are available for $80-$120 a night. You rent by the room or the full 3 bedroom townhome if it's available, and they have a full kitchen. You can walk to the hospital.

Of course, this is not 100% settled. We still have a consult with a neurosurgeon from Georgetown tomorrow at 3pm. Dr O's nurse is reserving my pre-op and operation times, but we still have the option to back out if we choose to go w/ Georgetown. I will update tomorrow after my appointment.

For now, if you're local, or even non-local but want to help, we'll be starting to coordinate care for myself and the kids, and Charles too. We have our nanny from 8:30am to 5pm Tuesday through Friday, but there will be evenings and overnights when we will need someone to come stay. I will also need support at the hospital for those 3-4 days and then some company for my observation period the week after. We would also appreciate meals and help with household chores (dishes and laundry). If you'd like to help, please email Charles or I. Any help and support you can offer will be greatly appreciated. I already know we have an awesome support system, so thank you all!