TBI One Love Survivor Nikki Lawley
Hello, my name is: Nikki Lawley and I am a survivor of a Mild Traumatic Brain Injury.
On October 11thof 2016, that date will be forever etched in my brain. That is the day my entire life changed in the blink of an eye!
I was working in a large pediatric office as a pediatric nurse (LPN), I had been with the practice for over 5 years. It was my 12-hour day and it was late in the afternoon and one of my co- workers had an uncooperative child refusing his routine immunization that is required for all 6th grade students in New York State.
I was about to go on my evening break but I jumped in to help my coworker before I left as there was no one else available. This child could be heard screaming and carrying on throughout the entire office and waiting room. I walked into the room and it was chaotic with the child being uncooperative.
This is simply a ten-year-old boy who was my size who did not want the vaccine. He was not special needs, not abnormally large, had a strong father who just needed some guidance in restraining him.
The father was attempting to hold the ten-year-old but he was flailing all about and truly very strong. The child was about my size (I am 5 feet, 105 pounds) but I felt confident the father could assist in restraining him. Every time my coworker would attempt to administer the vaccine the child would flap his arm like a duck and she could not give the shot.
I instructed the father how to properly secure the child with him holding the child in front of him, crossing the child’s arms over his chest. I then got behind the child and father hugging the child into the father with all my might.
The child at this point tucked his chin into his chest and threw his head back into my forehead the frontal lobe and the upper most part of the bridge of nose with such extreme force I was thrown back into a plaster wall hit the back of my skull with extreme force and back into the child’s head in a whiplash type fashion.
Immediately I was dazed and could not walk well. I had immediate paralysis in my left arm, from my neck down to the middle finger. It felt like a blow to the entire arm, like hitting your “funny bone,” it was all I could focus on. My vision was blurry and honestly it isn’t clear what exact other symptoms I was having as my head hit the wall so hard, the Physician’s assistant in the next room came bounding in to assist. I was useless at that point and the physician’s assistant ended up literally sitting on the child to get the vaccine administered by my coworker.
I had to run out and get something to eat and actually drove my car around the corner and got take out to bring back to the office. When I returned to the office I was super nauseous but figured I was just hungry.
My head felt disconnected from my body, I had a hard time describing how I was feeling. I ate a bit and took two Advil. I then vomited and felt so dizzy, my balance was off. I continued to have left arm numbness and tingling, my eyes were just not right seeing spots almost, I could not focus. I felt like I was hearing people taking but not grasping or understanding them. My head was throbbing. I was put into one of our exam rooms and our main physician said he was fairly certain I had sustained a concussion and I had to go to immediate care and make sure nothing else was wrong. I went to immediate care with a diagnosis of cervical strain and closed head injury. This was the last day I worked.
No one including myself ever believed two years later I would still be so symptomatic despite spending 60k of my own personal money on testing and therapies not covered by worker’s compensation or insurance.
Until this happened to me, I didn’t really understand brain injury or concussions. This instance was my third concussion. Being in pediatrics virtually my entire nursing career I knew how to handle my job and I did my job with skill. Children liked me and I had a way of getting them to accept themselves and I could get even the most stubborn of children to usually laugh and joke around. The parents always had positive things to say about my skills. I have always been an upbeat person with positive energy.
I didn’t know or understand chronic illness or chronic pain because of being in pediatrics we didn’t have a lot of chronically ill children. The ones we did have were primarily managed by other specialists so my exposure to these families was more limited.
I can honestly say I never ever understood the meaning of the words “invisible disability “. I never imagined that I would be become a true victim in a healthcare system that literally does not have a clear understanding or knowledge of Traumatic Brain Injury, there is NO standard of care for TBI.
The worker’s compensation system is so outdated with what it pays for or approves for TBI. My days are not spent recovering from TBI but they are spent searching for answers and trying to get better. My days are filled with appointments mandated by worker’s compensation or those treatments I am trying which I am paying for out of pocket. I have now had in two years 5 IME’S -Independent Medical Exams mandated by worker’s compensation. These are doctors paid for by the insurance company to basically say there is nothing wrong with you and you can return to work. Two of their own doctors -which have declared me 100 percent disabled and unable to work at all and stated I have reached max medical improvement. This is not what worker’s compensation expected at all.
The symptoms I experience daily since 10-11-2016 include:
Daily unrelenting headaches behind my eyes and at the base of my skull. 7/10 pain scale. (Level 10 is very high - I used the level 10 when I broke my leg in five places) for most people this level 7 would be unbearable. I am getting used to it unfortunately.
Chronic pain in the left arm, numbness and tingling as well as chronic weakness. I can’t hold any weight on the left, even my cell phone is a challenge to hold and type accurately.
Neck pain and upper back pain - cervical instability -Since receiving Botox for the second time in December 2017 it has had a complete opposite effect. (the first was 8/2017) My neck, shoulder and upper back muscles are in a constant state of hyper spasm despite massage and physical therapy. I have now had special imaging that shows I suffer a significant lateral instability of my c0-c1, c1-c2, c2-c3, c4-c5. My alar and transverse ligaments are damaged and unable to really recover without some major intervention such as stem cells.
Allergies have gone absolutely crazy since this injury. To the point of crazy allergic / anaphylaxis to foods or medicines I have had before. I am so severely allergic to any of the topical anesthetics I went into anaphylaxis during the testing of these in the allergists office. I cannot get dental work done now. Anything in the Novocain family is 100 percent out of the question for me. I must now undergo general anesthesia for the most minor of things. I am told with TBI and going under anesthesia you are going to just compound the mental issues.
Major hyper startle issues and reflex’s now very jumpy. Physicians ask me repeatedly if my reflexes have always done this.
I now suffer cataracts, which were just diagnosed because of high steroid use. Was on multiple steroids due to head pain, IV / IM Prednisone, and Dexamethasone. (Started and stopped several times). I have mono ocular vision; this must be noted because traditional vision and vestibular therapy don’t work the same way for me. I have had 5 eyeglass prescription changes since this injury. The latest glasses 5/2018 are prism lenses and extra bifocal strength. As the day goes on after watching tv or screen time on the phone or computer I cannot see. My eyes just give out. Stop focusing to the point it is impossible to text even. I have extra-large everything to attempt to compensate.
I now suffer significant anxiety since my third injury, to the point I worry about everything including things I have no control over. I feel paranoid of police and weather disasters with no logical reasoning. I have had mild episodes of depression in the past, since the third injury the depression and anxiety have become so much more severe. I feel I am much more stable on the medication I am currently taking, however I am constantly at a battle with myself worth and constantly feeling useless and worthless. But I try every day to find something positive, something to stay afloat.
I become overwhelmed in noisy or crowded places. I have zero tolerance for people sometimes and become agitated, sad or snappy very easily.
Neuro fatigue is a significant issue for me. I tire easily and if the subject is not easily understood I have a real problem following the conversation. I am best I find mid-morning and early afternoon. Those seem to be my peak of ability to function times.
I have poor emotional control, and my feelings are constantly off, mostly sad or anxious. I have no filter or self-control. If I think it, I say it, which can be socially very inappropriate at times. I am very verbose and wordy now. It is challenging for me to stay on topic.
Going shopping, to a movie, concert or bar is impossible without turning off my hearing aids, so I just don’t go anymore.
Going to the casino was one of my past enjoyments, but it is now un-pleasurable due to the lights and noise that I just can’t silence in my head anymore. When I do go, it is at off times and always to the same places in the casino that are more quiet and tolerable.
I have major issues falling asleep and staying asleep. I frequently wake due to head pain.
I can’t physically blow-dry my own hair because of lack of strength in my left arm.
I am unable to count change at the grocery store because I can no longer do simple math. I am overwhelmed with simple tasks, such as making a phone call to the doctor or pharmacy.
Filling out new patient forms cause me a significant stress and anxiety. I can’t fill out forms, it is too much and I can’t remember basic things without having them listed on my phone. My allergies and medications are an example of this. My handwriting is completely illegible.
Living with chronic pain is hell. I do not remember what it feels like to not wake up and go to bed in pain. This has changed my life significantly and I am trying to do all the doctors and therapists tell me to do but I become so overwhelmed and I forget things so easily.
Taste and smell impairments. Food no longer tastes good, it has an off taste to me.
Fine motor issues include; buttoning, writing, tying, zipping, and holding anything steady. I have a fine tremor all the time in both hands, and the left seems more pronounced.
Balance and coordination issues significantly impair my daily function. I drop things, run into things, and trip over my own feet. Going in an elevator or up an escalator makes me feel so off even when I am off of it for several minutes to hours. I am dizzy so often I often literally hug the wall to walk. The heel toe walk is impossible. Closing my eyes when standing immediately the room feels like it is spinning.
I suffer significant cognitive impairments with short-term memory, even things as basic as self-care, teeth brushing, eating, and remembering where I was or what I did an hour ago. I carry many dollar bills around with me at all times because I can’t count out the change portion.
I can’t remember what I am saying so often. I repeat myself constantly truly not realizing I am doing it. I have brain fog, brain zap feelings. Lose things constantly despite routines and really trying to be organized.
I get lost constantly while driving. I have to rely on GPS, even when going places I go to all the time. It is very frustrating.
I lack executive function ability. To implement anything is very overwhelming to me. To be able to just plan for a basic get together with family I lack the ability to do so.
As I mentioned this was my third concussion. The first two there was nothing super significant about them other than after my initial head injury in 2011 my allergies began to act up. Like needing epinephrine for insect stings for instance. They say it takes longer to recover after each injury.
1 st mild tbi -2011- concussion/ Mild traumatic brain injury, I hit the corner of a desk frontally. Quick recovery, no imaging done, went to ER, dx of closed head injury.
2nd mild tbi -2015- concussion/ Mild traumatic brain injury, I hit back of head after slipping on ice in the driveway. Experienced significant head pain and feeling off but after a few days seemed fine. Went to ER dx of closed head injury.
4 th Mild TBI after the work incident -5-24-2017 while packing up from a brief trip to Canada with my cat, I leaned over and lost my balance and really hit my head significantly on a glass snack bar.
I was talking to my husband on the phone at the time and he heard me hit my head and drop the phone. I definitely lost consciousness for at least a minute or minute and a half. When I came to, I was dazed and hearing my husband screaming my name via the phone. I hung up on him and managed to get up and go to the bathroom. I was unsteady and I saw a tangerine size goose egg on my forehead and some blood.
Immediately my thought was ice and I could not figure out how to find the bag and put the ice in it. I vomited and almost passed out from dizziness and pain.
My friend rushed home and I was evaluated at Kingston Ontario General Hospital. No imaging was done and my bump continued to grow. I didn’t feel comfortable to drive so I remained in Canada a few days. My symptoms really didn’t get much worse than they already were. Which I guess is good.
I have had numerous radiology studies on my head and neck including :CT scans , MRI scans , Spect Scans, X-rays , including motion X-rays, EMG studies.
My diagnosis have included :
Post concussion syndrome
Abnormal head & neck MRI’s: bulging & herniated discs & ischemic areas in the brain
ADHD/ depression / anxiety
Asthma / severe allergies to medication -food -insects
4 concussions/ Mild traumatic brain injuries between 2011-2017
My current medications are:
Adderall XR 30 mg qd
Zoloft 100mg qd
Pro air 2 puffs prn
Epi pen / Avi q
Synththroid 1.50 qd
Xanax 0.5 mg 2 at hs and prn
Medical marijuana (NYS card) qd
I have now used medical cannabis for chronic pain/head pain relief. I can honestly say cannabis has saved my life since this injury. I can tell you all the failed Pharmaceutical drugs almost killed me. I still am learning about this powerful plant and understanding the different cannanboids and terpenes , learning what strains work for my symptoms and what does not help.
As a nurse I was never trained about cannabis , as a patient i was never offered cannabis as a choice. As an advocate of my own health and well being I tried it and I kept trying it and using different forms of it and different strains. I have learned being a patient in New York State I am not offered the option of full flower or dried cannabis flower. This is significant for me and I am forced into the black market for medicine. I am formerly completely professional. I don’t do illegal things. So having to deal in the black market is horrifying and I have no idea what I am really getting.
Cannabis in Canada has really helped me understand this plant and how it can help me. I have been traveling to Ontario where I have legal medical cannabis sent to me at my designated address for shipping to me.
Meds tried since 10/16 and discontinued:
Ambien 10 mg 1/2 at Hs
Topamax 25 in am 25 pm
Klonopin 1mg 1 at Hs
Cymbalta increased to 60
Cymbalta 60 mg 1 daily wean off starting 8/9/17
Memantine hcl 5mg 1 bid
Flexeril 10mg 1-2 at Hs
Trazodone 50mg 1-2 at Hs
Adderall 30 mg 1 at 3 pm
Wellbutrin SR 450 mg 1 daily
IV headache infusions
Neuropsych dr x3
Spine and sports
Massage therapy -3h/wk
Cognitive therapy x2
Physical therapy x2
Since I was 16 starting in retail sales. I was a very successful business owner for many years in the HVAC filtration industry as a woman owned business specializing in indoor air quality working with contractors / schools/ hospitals/ large industrial clients. I worked 60-80 hours a week with extensive travel across the country. When the economy changed so did my business. I ended up getting back into nursing and had taken a casino-dealing course. I worked as a nurse full time and at the casino as a dealer full time for 7 years working as an employee 72 -76 scheduled hours every week. I left the casino only because of the cigarette smoke; it was making me ill and causing me to really suffer respiratory issues. After April of 2014 I worked exclusively for the employer I was working for at the time of my injury.
I have been approved for Social Security disability (March, 2018). I will be eligible for Medicare in mid 2019 . I am currently under NYS workers compensation. I am still collecting my partial wage from them and they are covering what medical they will cover. I also have private Heath insurance via Cobra .I am also receiving long term disability payments from my employers insurance carrier .
I have not been able to return to work and practice nursing since my work injury 10-11-16.
With my passion for helping people I hope to help educate others on the benefits of cannabis. The benefits for traumatic brain injury and cannabis and my host of issues because of my TBI. I am hoping people won’t have to go threw the host of drugs and failed treatments I have and can explore this plant as a medical option. I have my limitations for sure on what I am able to do ..... but I want to share the message and joy of cannabis as a real option. I would love to be part of a company that does research on TBI and cannabis. I would love a strain developed with the specific terpenes and cannaboids that have benefited me. It has been by chance when I find the strain that works. I know now more of what to look for and specific strains that help me. Israeli is leading the way in research and development of cannabis and TBI. Cannabis is so much better than Pharmaceuticals.....doctors need to listen and hear the message of cannabis. They need to hear my story and realize the benefits of cannabis as medicine.
Thank you for reading my story!