I’ve just been hanging on and trying to keep it together until I see my surgeon again. My mom and I flew to Colorado yesterday for the follow-up tomorrow. It took me over an hour to get through TSA at PDX. I can walk short distances but the neck brace prevents me from looking down. I trip over small things and still can’t walk inclines. Also, when I stand up it’s a slow process, I need a minute or so before I can start moving. I’m still using my walker and slowly regaining stamina and stability. Not being able to look down or move my head sideways is very scary and makes me feel vulnerable.
I use a wheelchair to go through airports. The employee who pushes my chair helps me with everything. Yesterday, he helped me take my coat and shoes off and loaded everything on the belt for me and then waits on the other side. When I got to the metal detector, they asked if I could stand and walk. I told them I could be would need a minute to let my body adjust so I wouldn’t faint. Then casually dropped that I had three brain surgeries and my neck resembles Frankenstein. He moved my wheelchair over to the side and said he wasn’t going to take any risk, so I was going to get a pat down by a female agent.
I sat in the corner of the TSA line for over 20 minutes with my mom on the other side while we awkwardly tried to communicate with hand signals what was happening.
The agent finally come and took me and my mom to a private area, where she did a full pat down and swiped my body for drugs. The she had a handheld detector and scanned it over my body. It went off at my surgical site several times. She asked me if something was under my brace or if there was metal in the brace. My mom told her I can only have my brace off for 5 minutes a day, so I could take it off and they can use the wand to check it. The agent said they would have to run it through the machine with suitcases, but they would skip the line and it would be 2 mins.
She called her supervisor who came over and my mom showed her the x-ray of my neck and skull. Once she got an overview and saw the picture she let me through. She said there was so much metal in my neck that it was definitely setting off the wand.
We made it to the gate with a few only a few minutes to spare. I can’t remember how I navigated walking down the aisle of the plane last time, but this time I couldn’t stop tripping and I was followed closely by a crew member who asked me every few seconds if I need help. I did need help, but I didn’t know how I could get help in such narrow area. I was almost crawling to my chair. I had a tight grip on the chairs of both sides of the aisle. I am glad the first leg of traveling is over. Once we got to our room at the hotel my mom and I started laughing at all the random mishaps of our day.
The last few weeks have been really hard with managing symptoms, breakthrough pain, and some neurological complications.
Every doctor, specialist, and handout says to go to the ER for new or worsening symptoms. I was at physical therapy working with my therapist I’ve known through all my past surgeries. We started PT earlier to learn things like how to roll out of bed, get dressed, take a shower—basically how to live with a neck brace and fusion.
When I was with her, I shared some new symptoms I’m having and others that are getting worse. She recommended going to OHSU if it got worse or I felt uncomfortable. I really, truly do not like going to the hospital or ERs. I did go that night because I was having new symptoms and things were changing. I was scared and wanted to handle it by dealing with it “later.” Then I thought, if something was going on, I didn’t want everything I’d just gone through to have been for nothing.
When I got to OHSU triage, they took me right back to a bed in the hall, did some testing, and said they needed to do a scan—but they had to ask neurosurgery what kind. We waited a few hours, and the resident came back to tell me neurosurgery said there were no new symptoms or points of connection for treatment or a scan, and if I wanted to wait, it’d be 18 hours. The resident then pointed to the lobby and said very clearly, “You would wait 18 hours, but not them, because it’s different for you.” I calmly pointed out that all the symptoms neurosurgery was wanting were the same ones I’m having. The resident just repeated what she said, and I told her I wasn’t going to deal with this and wanted to be discharged. She left without saying anything.
A minute later, while we were gathering our things, the resident returned with her attending physician, who stopped us from packing up. She relayed the same message from neurosurgery, only way more aggressively. I asked her, if I didn’t have any of those symptoms, why did they order several tests, including an ultrasound? She replied that I needed to have symptoms to be treated.
My mom interjected, telling the doctor she was medically gaslighting us. To which the doctor replied, “Yes, I know. This is the reality of medical politics.” She added that neurosurgery all said I needed a scan, but that I should go to the ER of the hospital where I had surgery, even though they knew that was in Colorado. None of the results from any of the tests they did were posted in MyChart. When I told a doctor filling in for my primary care what happened, they said that’s pretty much what they wrote on their end.
My mom and I just looked at each other, and without a word, we left. The attending doctor followed behind us like she was security escorting us out to the lobby. I went up to the desk and asked for her name. They gave us the number for patient safety, but they didn’t seem to care.
I had forgotten that OHSU had told me my medical case was too complicated and they didn’t have a surgeon with the knowledge of Chiari Malformation to treat me.
If I didn’t have my family helping, I have no idea how I would’ve made it through all of this. My mom is up with me late at night when I can’t sleep, and I wake her up when she’s sleeping if I’m in pain or need help with something. My dad moved furniture around so I can use he walker without worry of running into things. Isla helps a lot too. I’m still under heavy restrictions with what I can and can’t do.
The neck brace is hard to live with 24/7. There are times I want to tear it off. Other times I don’t notice it. Sometimes it feels like a wet scarf. It’s not helping my sleep.
The surgeon explained that the bones and hardware need to fuse together over the next few months and to not take my brace off under any circumstances. I have a foam brace to wear in the shower, and I get five minutes to lie on a heating pad.
A sweet lady at my church made me a rice heating pad. I use it for my incision, neck, and every joint that hurts from all my weird ways of sleeping. My church has been so helpful and supportive in this time. We’ve had wonderful ladies bring us meals, and our church sent Mowtown came and helped with yard work. They also made the path from the driveway to the front door wider so I can get through with my walker.
Even with all the hard things happening, there are still so many blessings. It’s easy to just let myself focus on all the negative things. But then I get out of the car and can walk to the front door without navigating a path not big enough for my walker. On days with long appointments or a day we finally get to stay home, lovely ladies from church bring us meals. I’ve received cards that I keep close for a rainy day.
It’s hard sometimes feeling lonely and overwhelmed in this season, but there are still blessings and kindness.
My mom read this quote to me the other day when I was feeling the weight of everything—past, present, future, and the loss of a future I thought I would have:
“Occasionally weep deeply over the life you thought would be. Grieve the losses. Then wash your face. Trust God. And embrace the life you have.”
~ John Piper
God Bless you,
Shae
Weathering Chiari 