Friends, thank you for praying with me over this appointment. My neurosurgeon is very kind and compassionate and understands what is happening in my body.
The long story short, I need another brain surgery. My neurosurgeon explained the MRI shows that directly under the titanium plate the tissue is collecting fluid like a blister. It’s about the size of a dime, but is causing Hydrolephusis (fluid on the brain) and irregular CSF flow (the fluid that travels around your brain and down your spine).
The tissue they harvested from my scalp is too fragile and has worn thin. The surgeon says the cause of the fragile tissue is probably due to Hypermobile Ehlers-Danlos Syndrome (hEDS). This diagnosis would be the reason my body is not healing and accepting the titanium plate. The tissue surrounding the plate is too fragile. The neurosurgeon said we are going to do the surgery “ASAP, the sooner the better” (meaning as soon as they can get me scheduled- so urgent, not emergency). They scheduled me for the soonest appointment on the 25th of this month.
So, in 15 days I will be having my third brain surgery.
The surgery will require removing the plate because at this point the titanium plate is hindering my progress. The scar tissue and muscles are already adapted to their new position (think like training flowers with a trellis) and we need to give them more room to sag. The dura patch is also going to be replaced. He still is figuring out the details of the best way to do it, but he wants to double patch it. Preferably with my own tissue from my scalp, possibly from my thigh, and maybe putting a seal over it. He is going to really think through how exactly he conducts this surgery because of the high risk and my body not healing as expected.
A few weeks ago my scar flared up with red bumps and scabs that are still there. He said my scar is too thin and fragile. It looks what he would expect it to be after two months of healing, not over a year and a half ago. The surgeon said my scar may be bigger and wider, but it should be stronger and healthier.
While the idea of a third brain surgery is overwhelming and I dread it, I’m glad that there is a clear mechanical problem and a solution. We’re hopeful that the surgery will help me get back on track.
Please continue to pray with me. I’ve been struggling and have known there was something wrong and suspected I would need another surgery, but I’m also still reeling.
Here are some specific ways you can pray:
- Peace. I know the physical pain that comes and I’m fighting moments of panic. I know it’s going to be a lot to physically push through and my body is already in pain and weak. There’s a whole road of recovery ahead.
- Guidance with all the paperwork and insurance processing that needs to happen in the next two weeks.
- I have to do bloodwork, chest X-rays, etc before I’m cleared for surgery. That those would go without a hitch.
- The planning and logistics of getting to Colorado and staying for 16 days. The surgeon wants me close to the hospital in case any complications arise because of the risk of healing.
- Strength from God and endurance. My body is aching and my symptoms are growing. It’s very daunting and there’s going to be a lot to push through and I’m weary.
- For my family-going through multiple brain surgeries gets harder, not easier and it is traumatic for all of us.
- Support. This is a lot to pull together in two weeks. If you can support in anyway please reach out to me and I can send you my Venmo or Zelle.
I’m so grateful for all of your continued prayers and support as I’m climbing this next mountain, or never ending mountain. Even though we don’t always understand His ways and sometimes the prayers are not answered in the ways we want, He is still walking with us and holds us close in His love.
God Bless,
Shae
Weathering Chiari 