I’ve been rather quiet for a while. I had my brain surgery back on September 16 and have been dealing with a lot since than. Currently, my major issue is medical trauma that likes to pop up randomly in nightmares and completely disrupt my sleep. So. Here’s what happened to me getting the AVM out of my head.

The Lead Up

  • June 17 – worst headache of my life, followed up with primary care practitioner who referred me to an MRI
  • July 6 – had MRI
  • July 9 – was informed by primary care practitioner that I had an AVM in the left parietal/occipital lobe with possible evidence of prior hemorrhage to see a vascular surgeon on July 14
  • July 13 – had a hemorrhagic stroke, was given a CT scan and an angiogram through my right leg. I was awake, aware and can now remember the entire procedure. Was informed the AVM was not optimal for embolization by the doctor performing the angiogram. Spent the night in the stroke ward and was issued Keppra for seizures. Missed appointment with vascular surgeon due to being in hospital.
    • I was provided with an individual room for recovery after stroke and angiogram for the night.
    • Wren was asked to stay in the stroke ward with me to make sure someone was on hand to watch for me, even though I had access to a call button for nurses.
    • Purchased a medical alert necklace upon getting home.
  • Last week of July – Consulted a stereotactic radiosurgery doctor who explained the AVM was not sized well for radiation.  Also consulted a vascular surgeon in Tulsa who initially was eager to perform a resection of the AVM until being informed that embolization prior to surgery was not optimal. 
  • During July and August I researched seizures and how to make Keppra work better. Saw Nurse Practitioner to up Keppra dose. Reduced pork, sage, rosemary, and other dietary triggers, having found most of this information in Epilepsy Foundation and scholarly articles. Reduced noise and light triggers. Wore sunglasses when possible. Increased consumption of B6 through diet to help keppra work better. Stayed to a strict medicine consumption time schedule (7 am and 7pm) and hydration routine to reduce seizure frequency.
  • I worked with a dietician to utilize DASH diet to decrease risk of high blood pressure and potential repeat of hemorrhagic stroke.
  • Had frequent simple partial focal seizures localized to my right arm. Learned other issues, such as selective mutism, long deja vu, and rapid eye twitch that I had had for many years were also a type of simple partial focal seizure from the AVM.

Beginning of Time with Out of State Hospital

  • August -Researched AVM doctors and came to the conclusion that we would be using an highly recommended out of state surgeon.
  • August 27, Teledoc Zoom visit to discuss treatment options. Decided surgery was going to reduce hemorrhagic stroke risk and seizures quickly. Scheduled surgery.
  • Two weeks before surgery I was issued a nasal swab to be used from the 11th to the 15th of September to reduce infection risk. I was to arrive at hospital for blood tests, Covid test, and MRI contrast imaging on September 14 and to begin “Scrub” showers.
  • Rented an extended stay hotel room with kitchen to avoid potential covid exposure from Sunday September 13 – Monday September 21 within 3 minutes of hospital.
  • Started nose swab on September 11th twice daily.
  • Monday September 14, 2020: arrived at 1:15 for 2:00 appt with cpap ( pre-op) and 3:30 MRI with contrast appointment. 
    • Staff asked if I had been using the “decolonizing scrub antiseptic” wash since the 11th with the nasal swab (to reduce staph infection potential) and they realized they had forgotten to issue me the disinfecting scrub wash. They provided me with the scrub wash at this appointment.
    • Took until 3:30 to have staff start the anesthesiology interview – being told frequently that cpap runs late. This indicates insufficient staff. I informed them that I had an MRI scheduled at 3:30 on multiple occasions in an effort to hurry the proceedings along. They called and let MRI know that I was going to be late.
    • I was not informed that it was frequent for the hospital to run late prior to arriving for these appointments. Staying hydrated is not possible when you are not allowed to drink water in case of covid contamination. I had a certain amount of time before my veins would be hard to get blood from and my keppra would stop working. I was told my MRI would take 90 minutes and to avoid drinking before the procedure to reduce risk of ending the MRI too early.
    • Forewarned staff at cpap about needing a good phlebotomist with an ultrasound. Requested the Venous ultrasound twice. Did not get an ultrasound. They tried the left hand once and both elbows three times. Was supposed to have an MRI with contrast at 3:30. It was well past 5 at this point. Asked, once an iv line was in, if they could leave it for the MRI. Was told no. Did not get done with cpap until 5:45. 
    • Went to the other side of campus for the MRI. I was told by techs there that cpap could have left the IV. I asked for an ultrasound for setting the IV at the MRI. Staff said no and instead proceeded to try both my elbows twice and both wrists. Staff was able to set one pediatric butterfly iv in my right wrist, but I was told to be extremely careful to not move my wrist out of a cramped position and was heavily taped to keep the needle from slipping. Finished MRI late, heavily dehydrated and past usual time I would take seizure medications, leading to right arm simple partial seizure and egregious headache. 
  • Was informed of hospital policy that only one individual was allowed to be my visitor at surgery and that visiting hours were only from 12pm-8pm ‘because of Covid’. I requested Wren (spouse and caregiver during this time of brain surgery) be provided a covid test so they could stay, that way decisions made for me would be made with them present. I was denied that request.
  • Wednesday, 16, 2020. Arrived for surgery. 
    • Wren was made to sit downstairs and I was split off for operation prep. 
    • A nurse took my clothes and glasses after I was split from my spouse and was unable to leave my disability aid (glasses) with them. I was no longer able to see clearly. I am nearsighted, do not utilize contacts, and have one pair of glasses that I use on a daily basis.
    • I asked for an IV set with ultrasound, still having blown veins and bruising from Monday. They said no, and to be prepared that they may have to go in through my artery or my feet and that it would hurt because they would be unable to numb it. Proceed to repeat with multiple blown iv lines in hands and arms. One anesthesiologist got a ‘precarious’ line in the top of my left hand. 
    • Went under anesthesia. 
    • Came out in excruciating pain, having had an angiogram through right wrist, arterial line through left wrist, femoral line in right leg, foley bulb catheter in bladder, and a temperature catheter inserted. I was not informed that I would have an angiogram through my wrist specifically going into surgery, just that I would have an angiogram. I expected an angiogram through the leg/groin sight I had previously had done to me. (I am right handed, and use my right hand for my work as an artist, so this was vexing)
    • Field cut to vision on right side, leading to not being able to see anything clearly on right – where doctors kept sitting to run neural checks on me when I expressly informed them to move to the left so I could see them and their instructions. 
    • No one could figure out where my clothes/glasses had gone from surgery, which made it difficult to see. 
    • I couldn’t see the clock, nurses, doctors well. The Nurse Call button was placed on my right side of bed out of line of sight, I could feel it though.
    • Vomited bile twice. The plastic water bottle had such a strong smell that everytime I drank I thought I was going to throw up again. Throwing up causes a ton of pressure pain on a head wound and sitting up to throw up with a femoral line, an arterial line, and a right wrist that can’t twist after having an angiogram is incredibly difficult to manage.
    • No one provided me with a prop for my head. The back of my head hurt immensely every time I tried to rest it against the pillow, especially since the nerve block worn off very early. I had to stay sitting upright for 12+ hours to keep pain down in my head caused by my skull touching anything before the staff realized what I had been asking for (eventually crying for) and I was provided a makeshift rolled towel behind my neck around 5 the next morning.
    • I was informed by nurse on Wednesday evening before night shift change that the foley bulb catheter and bladder bag were to be cleaned every 4 hours to prevent infections. The night shift nurse emptied the bladder once around five in the morning. The morning shift nurse on Thursday 17, 2020 was the first to clean the catheter that was supposed to be cleaned every 4 hours, 12 hours later.
    • I have seizures, consistent with an AVM near the parietal lobe. During the evening shift on the 16, I had a full body clonic seizure with breathing problems and mutism, but not grand mal as I retained awareness. They kept telling me to do breathing exercises and that I was just anxious. One doctor asked why I did not “have my depression or anxiety medications on file before the procedure.” I have never been diagnosed or issued depression or anxiety medications. 
    • They did an EKG on my heart and a CT scan after that full body seizure. Laying perfectly flat on a head wound not more than eight hours after surgery is incredibly nauseating and painful.
    • After adjusting me for that, they told me I was fine and left, having moved my call button up behind my headboard where I could neither see nor reach it. It took a long time for someone to hear me calling for help to get the call button back.
    • No one called to inform my spouse of the seizure, the CT scan or the EKG.
    • I was issued magnesium and a series of enzyme injections “just in case” I had a heart problem after the seizure with little explanation.
    • I requested pain management for my wrists – which hurt more than my head – ice would have helped but was told I could have no more pain medication then what I was given.
    • During this period in the neural ICU, residents streamed in and out of the room in large clusters right at the beginning of morning shift change. 
      • One particular male resident twice leaned onto my bed to run a neural check, both times bearing weight on the femoral artery line and foley bulb catheter, causing a burning/ripping sensation in both my leg and bladder. I told him to stop both times. He stopped when I finally moved my blankets having to nearly expose myself and pointed the lines out to him, which should not have been necessary.  
      • He had also said I would not need a follow up angiogram and all my lines could be taken out. I told him “no, ask the surgeon who did my operation”  who had previously indicated it would be necessary. 
      • I continued having extreme pain and seizures from literally all the monitors beeping, exhaustion, inability to sleep, and poor pain management.
      • One resident who took neural vitals had a bad habit of manipulating my very in pain wrists high above my head, which was egregious and unnecessary at the level taken. I realize there is a textbook instruction learning curve “you need to make it look like you are holding a pizza” but being unable to understand pain does not make for a good doctor.
      • By the end of my stay in the neural ICU for brain surgery I felt like a tortured sideshow circus monkey and desperately wanted to leave. I was not a patient. I was a learning experience for other people that were insufficiently supervised. Dehumanized is a term.
  • Thursday 17,2020. Morning shift arrives. 
    • One male doc determined I needed a higher dose of keppra once, which calmed the seizures for part of the morning. 
    • I was told I did not need another angiogram by multiple staff.
    • I asked if my surgeon had scheduled the angiogram and would have it done before being sent upstairs. I was told no, I would not need another angiogram.
    • They finally gave me something that made the pain stop when they took the femoral line out and sent me upstairs. 
    • For once, when they realized that the IV in my hand was blown, after taking out the femoral, they listened and brought in a guy with an ultrasound to set an iv line in my right forearm above where the angiogram had gone in.
    • I was moved into a 2 person room, having been told the floor was packed. The other patient needed a lot of care and attention, resulting in frequent use of the call button. This led to constant beeping, which led to me having more seizures. 
    • Due to the cramped conditions in this room, the moveable table on the left side of my bed that had my cell phone and water bottle was frequently shifted out of reach in order for my roommate to be cared for properly. The format of this room and my positioning in it led to people taking care of me on my right side though I found it difficult to see people on this side and had to repeat multiple times for people to move into my line of sight if they were trying to talk to me or give me instructions. I am left with a slight blindness to the periphery on the right side of my vision.
    • The call phones in the room were malfunctioning, resulting in either beeping for way too long, nurses having to repeatedly turn them off for being false alarms, or no ability to gain assistance on a regular occurrence.
    • I was told at 8 that evening by my surgeon in person finally that I would be having an angiogram after literally everyone else saying I did not need another one. I was put on no food or water after midnight. Keppra doesn’t work well if I’m dehydrated or lacking food.
    • I was administered heparin shots though I had told staff that pork product gave me bad headaches and can lead to seizures. Heparin has pork byproduct in it and after every shot, my brain/inside of my head would turn hot and itchy, a sign for me of an oncoming seizure,  and my pain management would get worse for several hours.
  • Friday 18, 2020
    • I ended up utilizing the bathroom facilities with no supervision after midnight because I couldn’t get someone to show up for the call button. I had a wrist band that said Fall Risk on. I was not supposed to be independent of a caregiver when exiting the hospital bed.
    • Ice to numb my wrists and head I could get, but it could take up to 45 minutes to get any. 
    • Lighting was off and on throughout that evening, making sleep difficult. 
    • I was made to take a random scrub shower at 3:40 in the morning and the staff did not know how to make the water warm – I had to instruct on that, and there was no assistant chair to sit on during that shower, though I asked. I could not reach my back and was unstable in the water. This was a step over bathtub with spray wand rather than a proper low profile shower stall. (FALL RISK)
    • Morning shift: nursing staff brings in dietary with breakfast and keeps telling me I am not having an angiogram. That I will be discharged today. I refused to eat and continued to ask after the angiogram, which had not been scheduled.
    • The hospital was inconsistent with the timing of my seizure medication, keppra.  I am extremely careful about timing at home because seizures get worse if it is administered inconsistently and without sufficient food and hydration. 
    • I had Wren come to my room  approximately two hours earlier than ‘allowed visiting hours’ because everyone was being inconsistent with if I was having an angiogram or not. 
    • No saline drip, no food, and no water except enough to swallow pills. Was finally informed that yes, indeed, I would be having an angiogram late in the afternoon.
    • I had another breathing mutism upper limbs clonic seizure while the nurse practitioner for my surgeon and Wren were in the room prior to the staff wheeling me down for the angiogram that was scheduled finally late in the afternoon. The nurse tried to tell me that I was having a panic attack and I needed to take deep breaths, but I was clearly having a seizure.  She asked me to say my name, but I was unable to speak, all I could do was nod. I was told by NP that I could skip the angio, that they could put me out after she saw me have a seizure. 
    • Wren and I expressed concerns of me seizing on the angiogram bed or of puking and aspiration while stuck down to the bed to the angiogram staff. 
    • I asked for the angiogram to be done in the left wrist or leg because my right wrist was still in an incredible amount of pain. 
      • Explained to the staff I have a high pain medicine tolerance and would need more than usual and i was afraid of the pain since i had this procedure done previously,
      • I explained to the nurse in the radiologist that I have seizures. 
      • I asked for help with not lying on my incision on the back of my skull. 
      • I was ignored on all those counts.
    • They said I was having a panic attack on the table and tried to get me through breathing exercise while they proceeded to go through my right wrist and I was having another clonic seizure. The monitors during the procedure were part of the cause for my seizures.  No effort was made to reduce this trigger. 
    • I also remembered the angiogram doc – the one I shouldn’t remember if I was completely under anesthesia properly during the actual brain surgery. 
    • They took me up to my shared room late enough in the evening that dietary dept had already made rounds and Wren had to go find food for me. 
    • Everything was still beeping in the room.
    • I refused to be administered any more heparin shots to avoid another painful headache and potential repeat seizure.
    • Occupational Therapy and Physical Therapy had signed off early in the morning that I could be discharged and the angiogram came back fine. I was being kept post angiogram to continue monitor my vitals, that was the last thing forcing me to stay in that room. 
    • I told nursing staff that they had two options: either get the IV needle (not connect to anything) out of my arm and let me go back to my hotel where I can stop having seizures and actually sleep or put me in a quiet dark room with no flashing lights or beeping, and allow my spouse to stay so they can advocate for me if I have another muted seizure that would prevent me from consenting to treatment. I would return in the morning if required. I was tired of being ignored and dismissed and not having an advocate when mute seizures would happen. I did not want decisions being made for me by staff while my advocate was not allowed in the hospital due to “visiting hours”. I told them this at around 6pm. 
      • They tried to protest this. “Against policy, against protocol, covid. You’ll have to sign an AMA. We’ll have to charge extra for the single room.” I told them I would take the IV out myself and walk out if I wasn’t allowed to sleep without seizure triggers. 
      • It took until 10:30 p.m. (2 hours 30 minutes past visitors hours) to be told that management had approved me for a single room but that it would cost a lot of money and I was rolled back at 11pm, where I finally truly slept for the first time since waking up on Wednesday from brain surgery. The seizures had subsided with the sleep, quiet, no heparin shots, low lights, resulting in better pain management.
  • Saturday 19,2020 I was released from the hospital. 
    • I never want to see that hospital again. I now have issues with dark rooms if I can’t see someone and my wrists get trapped in blankets or tight shirts. I cannot think of a single sum of money or perks one could provide me with in order to have me get into an MRI, an Angiogram, a CT scan or anywhere near someone with an IV needle without significant issues.
    • This experience has likely resulted in post traumatic stress, and I will be seeking counseling.  Not because I had my brain cut open, but because the countless times I was ignored when I desperately needed and cried out for help and the times my seizures were shrugged off as “you’re just having a panic attack”.  I also felt as if I wasn’t being taken seriously about my seizures and my pain because of my biologic gender and it’s association with ‘panic attacks’.
    • I had massive bruising on both wrists and tendons were very tender in my right hand. I am right handed. I am an artist and an author. I accepted the risk of blindness and possible paralysis of the right side with brain surgery, but not having damage from an angiogram (which could have been done in the leg, or other wrist) – twice.
      • Went in October to see general practitioner about right wrist pain that had not subsided. Was told to use a spica and to see an veinous ultrasound doctor and a physical therapist. It was determined that if the pain does not subside (I cannot take anti-inflammatories due to the brain surgery) I will have to see a surgeon. They found a significant narrowing of the artery at my wrist. I have no detectable palpable radial pulse in my write arm and cannot use pencils or utensils without significant pain after more than 20 minutes – literally cutting off my art practice.
    • Discovering how many staff didn’t understand seizures, let alone the fact that seizures are common after brain surgery, was not reassuring when I was on a ward floor that had an ‘epilepsy monitoring unit’. That I was subjected to multiple triggers after brain surgery because of incompetence.
    • My surgeon did his job. I’m not blind. I can walk straight. Everyone else who touched me after him did not do theirs to the best of their ability or where under supervised or under staffed.
    • No one I met was purposefully malicious, but being nice does not mean they are not also incompetent or over worked at their job.

Utilizing the phrase “this is a teaching hospital” should not be an allowable excuse for negligence, incompetence, understaffing, or lack of empathy.

I am a writer and artist working through the Kavordian Library series. I write sci-fi, fantasy, lgbt romance.

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