Helena's Second Brain Surgery

Helena is having a second brain surgery.

This new platform is to keep the second surgery separate.   It's hard to keep the two straight in your head.  It's also difficult to manage the family/friends associated on GoFundMe and family/friends on social media.    

It's easy to become complacent to surgeries.  It's easy to think because the first surgery went well, the second one will as well.  We all know there is danger and risk with any surgery.  While the first surgery went well,  it's still brain surgery.  

On February 19 we will be returning to University of Michigan for a second brain surgery.

I last wrote you 325 days ago. At that time we were returning from Helena's first brain surgery. As an emergency surgery, we had very little time to think about what was going on- let alone time to worry. In this nearly year-long period she has never had any further seizures. She's never suffered from any kind of side effects that one might have. She has been able to come off of the anti seizure medication they had her on as a precautionary measure. Helena's school work has been exemplary and there have been no changes in her mental ability, cognition or personality. Her neurosurgeon; Dr. Garten; has been nothing but pleased with her progress and delights in her as a human being.

To remind you at that time last year it was discovered she had four brain tumors. The one causing the seizures was removed in the emergency surgery last year. There are still three tumors remaining. One of the masses is too deep in the middle to ever be removed with the technology today. The other two masses are technically called vestibular tumors or schwannoma tumors.

Vestibular tumors grow on the nerve for balance. It transmits the signal to your brain telling the brain what position your head is in and allows you to not be dizzy when you turn your head different directions.

The vestibular nerve is bundled with two other nerves pressed close together. This bundle controls: balance, hearing and facial control. The bundle travels from the tympanic membrane (your eardrum) to the brain. She has a tumor on both sides effecting both vestibular nerves.

As the vestibular tumor (found on the balance nerve) grows it presses on the other two nerves. Your brain slowly compensates for the loss of signal from the balance nerve. It starts making judgments about where your body is in relationship to the rest of the world from other input it is getting from your eyes and how gravity feels on your legs and feet. However it also presses on the other two nerves in that bundle. Usually the first symptoms show up in hearing loss or hearing delay.

Due to the vestibular tumor, she has a slight (super slight- like 10 milliseconds) delay in her hearing but has not suffered any hearing loss. Throughout her lifetime, as the mass grows there will likely be hearing loss up- to and including total deafness.

Because neurofibromatosis type 2 is so rarely found in children there is very little research regarding it. Hence there is very limited knowledge to be able to speculate as to what will happen to Helena as she ages. NF2 is typically seen in middle-aged women. By the time hearing loss becomes an issue the patient is usually of an age that hearing loss would have become an issue typically anyways. They simply don't know because they don't see it often enough. They can make a guess that it will grow at a usual rate as other tumors do and she would be dealing with hearing loss in early adulthood.

Conventionally, surgery is performed to remove the tumor on the vestibular nerve only after significant hearing loss has been experienced. Helena's SENT; Dr. Artz; has been questioning this methodology and has provided to us some data points regarding the removal of the tumor immediately (rather than waiting) so as to mitigate hearing loss.

While there is risk with any surgery, we have decided to move forward with this surgery. It will involve removing the entire bundle of nerves. Alas, technology is not at the point that you can remove just one nerve within a bundle.

It will only be on one side. This means the other side can continue to grow and potentially wreak havoc on hearing and her facial nerve. The good news is that these types of tumors are relatively slow-growing.

The surgery will include going through the skull at the top of her ear creating a semicircle incision to end at the bottom of her ear at or near the mastoid. Again that means there will be some hair to be shaved and some fear about what she will look like post surgery. Given her past experience her fear is limited because of how fantastic the incision and hair shaving path was previously.

Post-surgery she has specific exercises to do. The exercises will induce a small amount of dizziness. The small amount of dizziness will retrain her brain to ignore the blank Channel it is getting from the ear that has had the bundle of nerves removed from. Immediately after surgery her brain will be confused because it is not getting a signal from that side. That will create dizziness as she lifts her head or moves her head. These exercises will help her brain Identify to Now ignore that blank Channel and to start with only paying attention to the opposite side, pay more attention to how gravity feels on her body and pay more attention to the information coming in through the eyes.

Her recovery should be about a week. Hence she will always have missed about two weeks worth of school.

Helena emphatically believes that this is part of God's plan and she is determined to make this into a positive experience for herself and perhaps be an advocate for others going through similar circumstances. She embodies the knowledge that she is made in God's image and she is fearfully and wonderfully made. Neither Mike nor I are angry or questioning God's plan. We both are kind of like "this sucks but meh whacha ya gonna do? you deal with the bull and keep it moving along". We think we have a good plan for taking our time off work during her recovery. But we are keeping that kind of loose. You know what they say about the best laid plans of mice and men. Based on our previous experience if all things go as expected she would have the surgery on Monday. Elena would stay in the ICU until Tuesday. Then she would be in the regular Hospital unit Wednesday and Thursday. With probable discharge Friday or Saturday, 2.24.18.

Please keep us in your prayers. Pray for Total Restoration so that this sweet girl does not have to deal with this nonsense the rest of her life. Pray for her doctors nurses and Care tea so that she can get the best there is to offer. Pray for her as she goes through another scary time. Pray for Mike and I as we handle the stress around surgery, medical bills, work expectations and still being nice to one another. Pray for Christopher as he experiences some scary moments and fear for his sister.

Feel free to ask any questions. Thank you for your help and care throughout this past year and trying times.