Thank you everyone for praying for my appointment with the neurosurgeon in Colorado. The prayers were needed. Travel was hard on my body.
We flew Sunday and rested Monday. Tuesday was appointment day. We were up at 4:30 a.m. our time to take a Lyft to the clinic across from the hospital for x-rays. It had to be done early so the radiologist could read it and send it to the surgeon to review before our appointment. Usually, I would get the scans done here and send them over ahead of time, but the office missed it.
After that, we walked to Starbucks to wait three hours for the neurosurgery appointment. We spent the time organizing my symptoms, notes, my questions, and questions from my physical therapists and neurologist.
After sitting in Starbucks for hours, we finally went across the street to the hospital. When we walked into the clinic, the receptionist turned around and called for a nurse. The nurse ran around the corner and said the surgeon was called into emergency surgery and I would need to come back on Thursday.
Right away, my mom and I said in unison, “We flew from Washington.” There was a scurry around the corner, and we waited a few minutes for a nurse to come and say that we could come back at 3:30.
We went back outside and had to figure out what to do while we waited. We didn’t want to take another Lyft just to come back later. We walked around a bit and then ended up back at Starbucks. It became a very long and exhausting day. I thought it would take up the morning and early afternoon, and then I would have time to rest before we traveled back home.
Finally, the time came to meet with the neurosurgeon. He is pleased with my progress. My scar is healing very well. The x-rays show that all the screws are in place and exactly where they need to be. We talked through my symptoms and how to treat or monitor them. We talked through the scary symptoms that sent me to the ER at OHSU. He had a fresh take and thinks they are related to post-surgical complications, not nerve damage. Most of the symptoms, he thinks, can be managed by medication and physical therapy. It was really good news and an answer to my prayer. Thank you everyone for praying with me for healing and through this very stressful time.
This is the most recent x-ray I had done in Colorado. The curving in my neck is from surgery and being in the brace. The brace is to keep those screws in place, while they solidify into place. I will do physical therapy in the future to strengthen and straighten the neck. The second screw going down is the one that gives me chills to look at 😬
I’m now able to lift 10 pounds and can start weaning off the neck brace. My neck muscles are very weak, so it’s going to be a slow process. The brace has a knob in the front that you can pull up and twist to adjust it up or down. Right now, the brace is supporting my head. During the day, I’m going to start turning the knob to make it loose, and then when my neck gets fatigued, adjust it back up (beginning with 2–5 minutes).
When my neck gets a little stronger and used to holding itself up again, I’m going to move to a soft collar, which doesn’t support your head as much but still protects it. Eventually, I will work to one of those travel pillows—not for support, but to keep my head movements in range.
Physical therapy is starting slow. I’m going for walks daily with my walker. 5 minutes out and 5 minutes back. There is also therapy for my eyes. I have a popsicle stick with the letter “A” on it. I hold it out in front of me and pull it toward me until it blurs, then I restart for a few sets. Then I do the same thing sideways. It’s going to be a long time to build up strength—especially since I was so deconditioned before this surgery, plus the other two surgeries. My body is weak, and this next year feels daunting. I probably have two years of 4–5 therapy appointments per week in front of me once I work up to them all. That will include balance/neck therapy, POTS protocol, speech/cognitive therapy, occupational therapy (handwriting, grip), and strain-counterstrain therapy. They almost all come with homework too.
I asked the surgeon how much longer he expected my pain to last and how high it should be. My pain is still incredibly high. My mom keeps a schedule and wakes me up throughout the night to stay ahead of the pain. I still wake up multiple times a night in pain, and there’s usually a point in the day I can feel myself wanting to slip into a meltdown like a child because the pain gets so bad it feels like I can’t talk. The surgeon said he absolutely expects it to be that high right now. He said to expect the pain to come down and feel better by the 6-month mark.
At 12 weeks, in December, I’m going to have a CT to check the bone graft and make sure it is still in place. That will also be when I have another check-in with the surgeon virtually.
These last few weeks felt so turbulent and so exhausting. I have a long way to go, but I made it past the two-month mark. I’m so grateful for all the prayers and messages. I received messages of prayers and encouragement in the moments I needed them the most. I came home to a gift from a friend and a card from an unknown sender. I don’t know who sent the card or how you got my address, but thank you so much for the card and encouragement.
The last month has been about surviving, and I haven’t been up to responding much, but thanks for all the love and support. 💜
Shae
Whoever sent this card to me, thank you so much, for your thoughtfulness. I received it the day I got home and it warmed my heart.
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.”
Hello friends! I have a HUGE development and potentially a chance at a major reduction of symptoms and a huge improvement in my quality of life.
I’m sorry for the delayed update. For a while everything was just the same. There wasn’t anything new to report. I was in and out of the hospital a bit and on and off bed rest. I didn’t want to share all of the negatives. But, no big developments…until recently. Now I am totally off bed rest and working on clear goals.
This is going to be a story.
Bear with me, because of my storytelling skills and it gets a little dense…
Back in the summer of 2020, before my diagnosis of Chiari Malformation and then brain surgery, the first thing my primary care suspected was a condition called POTS.
From the Cleveland Clinic:
“Postural orthostatic tachycardia syndrome (POTS) is a condition that causes your heart to beat faster than normal when you transition from sitting or lying down to standing up. It’s a type of orthostatic intolerance.
Each word of “postural orthostatic tachycardia syndrome” has a meaning:
Postural: Related to the position of your body. Orthostatic: Related to standing upright. Tachycardia: A heart rate over 100 beats per minute. Syndrome: A group of symptoms that happen together.”
“When we stand, gravity pulls more blood into the lower half of the body. In a healthy person, to ensure that a sufficient amount of blood reaches the brain, the body activates several nervous system responses. One such response is releasing hormones that help tighten blood vessels and cause a modest increase in heart rate. This leads to better blood flow to the heart and brain. Once the brain is receiving enough blood and oxygen, these nervous system responses settle back to normal.
In people with POTS, for unclear reasons that may differ from person to person, the blood vessels don’t respond efficiently to the signal to tighten. As a result, the longer you are upright, the more blood pools in the lower half of your body. This leads to not enough blood returning to the brain, which can be felt as lightheadedness (faintness), brain fog and fatigue. As the nervous system continues to release epinephrine and norepinephrine to tighten the blood vessels, the heart rate increases further. This may cause shakiness, forceful or skipped heartbeats, and chest pain.”
I had many symptoms at the time, but it only addressed about 40-50% of my full symptom list. That was enough for my doctor to want me to be aware of it. Then I went off to school, got diagnosed with Chiari, moved back home and had surgery. So in my mind POTS was off the table and not something I thought about very often because many of the symptoms overlap with Chiari. I have so many commodities, it’s impossible to pinpoint each symptom to the cause.
Since the second brain surgery in January 2024, I’ve been hit hard with lots of escalating symptoms. For example, when I stand my vision goes completely black and I feel very faint and will have to sit down or lie on the floor. It’ll happen even if I’m lying down and just shift to a sitting position. I’ve not been able to eat much, been very sound and light sensitive, my skin and eyes have been really dry, my bp is low, I am short of breath when I am not doing anything, and lots of brain fog and fatigue.
A few weeks ago I met with a pain doctor (my request, I was so desperate for relief and thought they could help with medical massages or things like that) and it went as bad as it possibly could. He told me it was a psychological problem and that I probably didn’t need the first surgery to begin with. He focused on the notes from the initial neurosurgeon in Seattle who wouldn’t do the surgery and told me not to get a second opinion. He didn’t seem to be very familiar with Chiari, so he talked about anything but Chiari.
When this pain doctor first walked into the room, he made some “jokes” that just didn’t sit right with me. About how thick my file was for someone so young and how confusing it was…hahaha. He said he was confused, so I must be too. Then he said that my problem is because of the syrinx (a fluid collection, like a cyst) in my spine and the patch in the lining around my brain is probably leaking and that I probably need a blood patch. If that’s the cause my symptoms would be different and I would probably need another brain surgery. Now, for those with Chiari and who have had brain/neck surgery you don’t want to mess with your spine like that without good reason and clear evidence. I’ve become very cautious with doctors who just want to poke and prod and throw a diagnosis at the wall to see if it sticks or to save time.
He also did an assessment and said I meet the criteria for EDS (Elhers Danlos Syndrome), but that no insurance would pay for a diagnosis. I’m not sure what “pay for a diagnosis” even means. EDS is something that comes up a lot. There is definitely is a crossover with Chiari Malformation and some of my other comorbidities, but I don’t meet all the criteria. The evaluation the doctor was using was an outdated and incorrect method of testing. I am very hypermobile and fit those boxes, but you can be hypermobile without having EDS. He also saw my referral for genetic testing and told me that there was no way I would qualify for that and that if I wanted to buy a diagnosis then it would need to be out of pocket. I felt completely misunderstood. I am trying to get diagnoses removed and looking for clarity, not to add anything.
I am not going back to him.
That same week I met with a geneticist who he took my history, reviewed my symptoms and decided I qualified for genetic testing. He also initiated an EDS assessment, but didn’t think I met the criteria for EDS. He said there are other types of hyper mobility conditions.
There are four ways the genetics test can go:
Nothing comes back.
One or more gene mutations.
A gene is flagged as a mutation, but there’s not any information on it and it’s unclear if it’s symptom causing.
Nothing comes back now, but as science keeps progressing and evolving something could be flagged in the future. It’s more for information gathering at this point for the future.
There are still so many unknown genes and information surrounding genetic testing.
Later that week I was sharing with a friend, who has POTS, what happened. She told me about Western States University and their POTS clinic, she shared they had really helped her get her POTS symptoms under control. She suggested we call right then and see about getting an evaluation appointment. This was on a Friday and I got in on the following Tuesday. I was stunned at how quick I was able to schedule an appointment.
We were there for five hours for the assessment. It began with a very thorough medical history, a neurocognitive assessment, a neurological assessment, an EDS assessment, and then a NASA Lean Test. One of the issues I’ve been having is getting a formal POTS diagnosis, because there is no one my primary doctor knew of in our area doing a tilt table test, which is what it sounds like and is the common diagnostic tool. There is a doctor at OHSU, but her waitlist is seven years long. The NASA test is a version of the tilt table test that NASA developed because for some reason all astronauts have come back from space with POTS. The NASA test is over 50 years old.
For the NASA test I wore a heart monitor and laid in a dark room with no talking or noise for 15 mins so that we could get a baseline of my heart rate, 66 beats per minute (bpm). Then I leaned against the wall with just my shoulders touching and my feet about a foot from the wall. Over the next eight minutes, while I stood there quietly and without moving, my heart rate jumped up an additional 76 bpm to 142 bpm and continued climbing. I couldn’t feel my heart rate climb, I just felt a little nausea and some mild dizziness.
I was not feeling very “symptomatic” that day, it was actually my best day in weeks and I was worried the testing would not capture whatever was happening to me. That was not the case. 😂 They cut the test two minutes early and instructed me to lay on the table so my heart rate could come down to normal. Then I was led to a room to talk with Dr. Bill Moreau.
Dr. Moreau did something that no other doctor has done before. He told me he was going to tell my story back to me from what he understood and he wanted me to correct him where he was wrong. He began from when I first started getting symptoms at 15 and went all the way up to now. He had the full picture and understanding that no other doctor I have met with has been able to grasp and understand. I was floored by his insights into the different phenomena I’ve experienced with my body. He explained things to me that I had even stopped bringing up to doctors because they just kind of stare at me and move on.
The reason why he understands so much is because he is a researcher and Sports Medicine doctor who runs a Concussion Clinic. He was part of the NFL International Think Tank on Concussion Research that changed the way concussions are treated. He was also the Vice President of Sports Medicine at the United States Olympic Committee for ten years.
Brain surgery (surprisingly…) counts as a brain injury (mild traumatic brain injury)(mTBI) )along with the actual compression of my brain for who knows how long. It honestly seems like such a simple solution and kind of obvious to be treated as having a brain injury, but for some reason that hasn’t been the case. I have no idea why no one has approached my case through a brain injury lens, but it makes sense and it has opened a whole new world of recovery to me. It is a huge answer to prayer.
Dr. Moreau diagnosed me with Dysautonomia, POTS is a branch of that. Some people develop Dysautonomia after a brain injury. 1 in 5000 people have it. He explained that research on it is moving from the fringe of science towards the middle because so many people have developed it as a result of Long Covid. He told me it is not in my head and that the symptoms they are measuring are things like my heart rate that I have no control over. He said it is impossible for me to make my heart rate jump like that. I know that, but it felt really good to hear it from a doctor. He shared that he isn’t going to be going off of my feelings, he is going to be working with measurable criteria. He used a computer analogy. He said that my processor and memory are working, but the CPU is broken. They will help my brain rebuild the pathways between the two.
Dysautonomia is the missing piece that contains a reason for all of the random symptoms I have been experiencing that my doctors have been struggling to understand. This chart captures most of it, it is just missing sleep.
“Dysautonomia is a nervous system disorder that disrupts autonomic body processes. These are automatic functions like your blood pressure and heart rate. Having dysautonomia means these functions don’t work properly, causing disruptive symptoms. These symptoms are often manageable, but diagnosing and treating dysautonomia is sometimes difficult.”
He also asked me to be part of a POTS study to show the need for active interventions (PT) so your brain can heal. I agreed. The idea is to create new neural pathways and to teach my brain how to not freak out when I move.
So, I’ve started this protocol where I go twice a week. My calves are wrapped with 6″ ace bandages for compression and I wear a heart monitor. I work one on one with a resident who leads me through a series of exercises for 60-90 minutes. The first two weeks are supposed to be the hardest as your body adjusts and your brain is pushed.
The other big thing the doctor recommended is getting prism glasses. He could tell by looking at my eyes that they weren’t aligning correctly. He explained that if we were sitting side by side with our eyes closed we are both running at 100 horse power. When we open our eyes, I lose 40 horse power as my brain tries to compensate for the misalignment.
He referred me to Dr. Elizabeth Powers, a neuro ophthalmologist who specializes in helping people with brain injuries. I met with her and she again did a detailed history and a lot of testing. She explained that the Dysautonomia is causing my body to be stuck in fight or flight, so we have to work on calming my body down. I started wearing the prism glasses a few days ago. They are tinted a mango orange and I wear them over my contacts. Glasses with an orange tint block out blue light, which helps our bodies’ circadian rhythms get back on track easier and should help improve my sleep. I am still getting used to them because they are physically retraining my brain to see in a different way. I should notice a difference in 3-4 weeks.
Dr. Powers also recommended blue light therapy for my eyes. She said that it will help to reset the biochemistry of my brain. It helps to reduce daytime drowsiness, brain fog and should help me sleep better. I am scheduled to start that next month.
I’m also still working with an Occupational Therapist, who is helping me with things like time management. We made a binder where I can visually see the days and my activities with places for notes. We’re putting together a tool box too with things like grips for helping me hold my pens and various ear plugs to help with sound sensitivity.
I’m still doing physical therapy for balance and mobility with the physical therapist who I’ve been working with for almost three years now. She is amazing and has been a key part of my team on this journey. There is also speech therapy and strain counter-strain therapy to help with overall pain relief.
There are still many symptoms I’m struggling with and some days are better than others, but I’m learning to manage it. I’ve made a bag I carry with me filled with ice packs, ear plugs, electrolytes, vomit bags, ginger drops, and anything else that might help me when I’m out and about, going to appointments and trying to live my life.
The hope is this clinic will be able to help me. I should know in two to three months if my body is responding or not. If I am a “responder,” then I will continue with the Moreau Protocol for the next 1-2 years. There are no guarantees, but hope that I will eventually be able to drive again and go back to school.
Prayer points:
Endurance I’m feeling exhausted. This protocol is a lot of work and I’m tired. I’m in my second week now and some days my symptoms and head pressure are bad and I lay down with an ice cap on my head. I also go to the other therapies, so next week there are five appointments.
Response Please pray that my body responds to this therapy and that I can enter into the long term treatment phase.
Hope It’s still a lot to process and I feel excited, but also a little bit of some “tempered hope” as it was said to me. I’m trying really hard to keep going and to be hopeful but at the same time there’s a part of me that doesn’t want to hope too much. I don’t want to get my hopes up too high like I did for my first surgery. It’s mentally exhausting.
Trust Going back to looking at the way I ended up at the clinic and how fast I got in with them and then quickly in with the neuro optometrist and I’ve already received the glasses two weeks earlier than expected, it’s clear God has a hand in this.
My mom took me to see one of my favorite bands, Cain and they sang a new song called, “Wings.” I thought it was funny because when you look up POTS and Dysautonomia memes there’s sayings about being “allergic to gravity.” “Wings” is a new song about feeling heavy and having troubled times always trying to bring you down. Then about how we’re gonna fly with wings like eagles because “gravity” has no grip and then to soar to new horizons.
Thank you all so much for your continued prayers and support. This is a long journey and I am glad I am not doing it alone.
God bless,
Shae
This is my song for this next season.
"Wings" by Cain
“Heavy days, heavy heart, got that heavy burden Weighing on my shoulders now Troubled times, troubled mind, got that troubled feeling Always tries to bring me down
The world can wait 'cause I'm gonna wait on You I feel my spirit lifting when I do
I'm gonna fly with wings like eagles Soar high above it all Gonna rise to a new horizon Yeah, watch my worries fall Gravity ain't got no grip on me 'Cause I've got wings Oh, you know I've got wings, yeah Oh woah
I might be down here, feet stuck on the ground here But You keep my head above the clouds All of the problems, way too big to solve 'em Are so much smaller looking down 'Cause only You can change my point of view I feel my spirit lifting when You do Oh-oh I'm gonna fly with wings like eagles Soar high above it all Gonna rise to a new horizon Yeah, watch my worries fall Gravity ain't got no grip on me 'Cause I've got wings
Yeah, I've got wings Oh woah Mmm
Here we go
I feel the roof coming off of this place Coming off of this place I feel your spirit renewing my strength Yes, Lord I can hear heaven is calling my name Yeah, yeah
And I feel the roof coming off of this place, yeah And I'm gonna fly with wings like eagles Soar high above it all Gonna rise to a new horizon Yeah, watch my worries fall Hey Gravity ain't got no grip on me Oh yeah, oh yeah 'Cause I've got wings
Sorry for the late explanation. I needed some time to calm down, restart and get and travel home.
Very long complex story, but I was readmitted because i had not had a bowl movement since before surgery. They released me before that happened saying it would at home. It never did. We called and they said if it was painful to go in, which is was so we did. We thought it would be something they took care of in the ER and we would be out that night. They came back in and said because of all the stitching neurosurgery wanted me readmitted for observation.
So, I was readmitted a scans showed a Seroma (fluid collection at the surgery site) that the ER was concerned about. The surgeon later told me that it’s very common and they would be surprised not to have one. That the ER always makes a big deal out of it.
During my 23 hour stay, I was not fed or given any fluids through an IV or a cup of water. Whenever I hit the call light button it was ignored. The doctor came in for around 3 mins and said all my problems were because I have an addiction to pain meds. (The one I just started taking after brain surgery on Monday). The only thing this doctor did was cancel ALL my meds for 10 hours. I went without pain meds other than Tylenol. There were a few medications the nurses even told me that had no idea what those were for and I had to explain how during brain surgery they stopped my CSF flow and I lost of CSF fluid so they filled me back up with saline and it takes time for the to become CSF, so that medication they stopped was to prevent the headaches that go with that. I asked for my meds several times and was always told to just wait for them to ask the doctor. They also asked the doctor if I could have a small bowl of oatmeal and an IV for hydration. They finally came back and said they could see the doctor was reading their messages, but not responding. They said we could fire her and get a new doctor, so I formally said that’s what I wanted to do. Another couple hours and they come back to say, I can’t fire her because she is the only doctor working that floor right now. They also let it slip that the doctor had also gone to empathy training before.
It gets to be a whole mess of meds being ordered and then canceled “this” is gonna happen but nothing does. I am in so much physical pain, starving, dehydrated and I don’t feel safe. I could write a whole post on medical gaslighting. It’s real and dangerous. I felt scared and so I stood out of my hospital bed and started taking off all the monitors and got dressed. I told my mom I wasn’t safe and was leaving. That I would follow up with my primary care back home who I love. There was no clear reason why I was in the hospital. I had already met my goal and was declining from no food or water. The nurses kept wanting me to stay for the next shift because there would be a new doctor and I could be reevaluated. They convinced me to have a meal and to just wait for a few hours or a new doctor. I did. Only to find out right before it would be the same doctor. I think they wanted me to stay because once you hit midnight again the hospital can charge for another full day even if I’m only there for a few minutes after midnight.
The doctor finally started sending in meds, but smaller doses than I take (according to the plan created by my neurosurgery team). I told my mom I was done with this pettiness and just wanted to go home where I know my parents can take care of me. I was physically not in that much pain and suffering at home.
One of the nurses I love checked me out before midnight and we got the number to call about that doctor. When we go back in two months for the follow up appointment I might want to follow up with what happened in person cause that was wrong. It took days to get my pain manageable again. I also have other conditions like POTS and fibromyalgia that were caused to flare because of the lack of care I was receiving. I have to be on it with my health. With the foods I eat, hydration and medication. Not even mentioning brain surgery. I was denied all of that under this doctor’s “care”.
I’m sorry it’s taken a couple days to update about this. I’ve had nightmares about it and it’s still real upsetting me to think or talk about it.
Weathering Chiari 