Transcription – English – Annabelle Edge

13. Annabelle Edge.mp4: Video automatically transcribed by Sonix

13. Annabelle Edge.mp4: this mp4 video file was automatically transcribed by Sonix with the best speech-to-text algorithms. This transcript may contain errors.

Annabelle Edge:
I'm here because I was asked actually by CAERS, by Max Daigle to come and participate. I had contacted the CAERS program to file my adverse event within the database because I mean, my background is in engineering, mechanical engineering. And if you don't have the data, you know how you can't see what you're not looking for.

Trish Wood:
So. So tell me the story of your injury.

Annabelle Edge:
Um. Well. Oh, sorry. The way that we were given, I was provided sort of a format for how to, to present here. So. And first off, I must say that I jumped at the chance. Jumped practically out of my seat for joy. The chance to speak to a roomful of people that might listen, that I actually hear me and most of all, that might actually be able to put into action. Tools and measures to help solve the problems that a lot of Canadians are facing. Just because we're rare doesn't mean we aren't real people. And you're not just sorry.

Annabelle Edge:
It's not just me. It's my two children as well. So. I as a solo parent, I am their provider, you know, and if you if if that provider is ill and incapacitated.

Annabelle Edge:
Those children suffer. So. Huh. So I'll start by saying my n ame is Annabelle Edge. I'm a 47 year old woman with two elementary aged children. I have to say what I often say when I've spent any appreciable time with anybody, which is that I have nerve damage to the right side of my face. It is from having well, I had mandibular surgery when I was 16, which already severed the nerve to my chin. I have 38 screws in my face. I don't know how many other people have that. It hurts my pretty rare, but I never had an issue with that from the age of 16. All through my adulthood, I was a perfectly happy person. I just couldn't feel anything if I was on my lower lip. In 2000. I often describe myself as having rare plus, rare plus. So I have these 38 screws in my face. I also in 2015 came down with Ramsay Hunt Syndrome, which is shingles, which is from chickenpox. It's dormant in your spine. But in this case, instead of affecting an area lower in your spine where you would present a rash, it impacts the nerves that serve your face, your hearing, your vision, your sense of balance, etc.. So I did have I had one of the things that's absolutely critical for that is to get proper care as soon as possible to be diagnosed and properly treated as soon as possible to minimize the damage. Because unlike where the nerves are and the rest of your body, the trigeminal nerve goes through a tunnel of bone, and when it swells up, it's got nowhere to go but be damaged.

Annabelle Edge:
So that's why it's so important to get treatment right away from that. And I did get that. I'm actually actually recovered quite well from 2016 up till 2020. And those four years I didn't have to take any of the anti-seizure medications that they prescribed for the nerve pain, except for maybe occasionally 1 to 3 times a year. If I really outdid myself, you know, maybe going out for Halloween until 3 a.m. and then after trick or treating, etc. all that might cause me anyway. Sorry that wasn't in the list, but they were. When I outdid myself. When I really outdid myself with active activity, I would have to take it. It wasn't until I actually came down with COVID in March of 2020, myself and my two children, we were very symptomatically ill with COVID. It actually took me six weeks, a good six weeks to recover from COVID. And what did actually sort of linger for me was that my trigeminal nerve was aggravated by it. And so I had to go back on to the antiseizure medications from July of 20, 2020. Up until December of 2020, by January 2021, I was no longer taking them. The reason why they have their own side effects. It's almost a toss up as to whether or not the cure is worth worse than the disease, etc..

Annabelle Edge:
And particularly for me, it's they have very negative side effects, including narcolepsy type sleep reactions and anyway upset about that. But I one of the things I was excited to present my story because I've I've told my story over and over and over again and I've told it over again to doctors, to nurses, to healthcare, to social workers, trying to and in the context of now and in the future, because I'm seeking help and I'm seeking resources to help us get through this. I never had to sort of sit down and think about what my life was like now versus what my life was like before. You know, I will you know, I'm bringing up the fact that I had COVID and that it did impact it because, you know, but I had recovered and from January of 2021, up until up until June, I didn't have to take the anti medications throughout that whole time. And I was active with my kids. I was taking them skiing. We were going swimming like I'm I've got two little boys. I'm a very active mum. I may not look active right now because anti-seizure medications also make you gain a lot of weight anyway. So one of the questions here was reason for taking the vaccine and how soon after did you experience your symptoms? So the first vaccine that I took was on June 1st of 2021, and it was within 4 to 5 days after that that I started experiencing a nerve pain flare, and it was a severe one one not like I had felt since I had initially had the RHS back in 2015.

Annabelle Edge:
It was horrifically painful. I was up all night. I basically passed out from pain because it's nerve damage. There's no limit to the pain. It can feel like there's a grizzly bear with his incisors in there and he's ripping off my scalp and there's somebody with an ice pack. Ice pick in my ear. It it is just I want to live. I love to live. I want to live. But it is just so painful that it will actually push you to those places. And so you have to. Surprisingly, when I saw myself, I go to prayer. I ended up repeating a prayer over like a mantra until I can I can pass out and hopefully wake up in a few hours and not be in pain and start the day afresh. So the first vaccine I had that initial paper, it lasted probably three days. I had to continue taking the the antiseizure medication for several weeks. By July of 2021, I was okay. I was better. My kids and I continued our activities of going mountain biking, moving swimming, going camping. And we, you know, and I was my back to my active self again in that time. You know, I'm the person who gets out the inflatable canoe and puts it over my head and I've got two kids in the row.

Annabelle Edge:
And so anyway. So, of course, as a single parent now having survived the all the restrictions from COVID, my finances were very much you know, I wasn't able to work because of all the school closures, etc.. So I was really down, you know, through that summer. I'm aware that I need to get back to work as soon as the kids go back to school. I got to get that resume out there. I got to get get back and get back to working. And so why did I take the vaccine? It wasn't for my health that I'd already had COVID. It was primarily because of all the at the time the intense pressure to be double vaccinated that employers were requiring it. You know, even the stigma sort of and fear, real sincere fear in my own building, because I live in an apartment building here in Toronto, you know, people are were terrified of each other. So I went and I got the second vaccine on August 1st of 2021. And same thing I had a similar within 4 to 5 days, I noticed that there was a pain in my neck that wasn't going away and it seemed to be triggering the nerve pain again. And I ended up, you know, I don't go to the hospital like unless you've got a broken bone, you need stitches or you're turning blue.

Annabelle Edge:
You don't show up to the E.R. in my book. But on August 8th, I had to go to the E.R. because I was in so much pain. Initially, I was diagnosed with having a swollen lymph node in my neck that may possibly be aggravating the nerve. I, I had actually made plans around that I was backing myself vaccinated. So I'd intentionally given, you know, planned activities that would be relaxing, that wouldn't that would require much physical exertion for me. But all of those plans were laid to waste because I was just lying in the hammock all day. I was incapacitated, I was camping with my kids. I managed to take my kids camping. And I was seriously thinking, Oh my God, I think I need to go back to the hospital again. How am I supposed to like what is going to happen? Like I'm camping, you know, who's going to pack up all my stuff for me? Like what's going to happen? I managed to survive that week, came back and on August 16th returned to the air again. And at the time, the IRRs were absolutely slammed. I don't fault our medical doctors in any way, shape or form. You know, their their purpose is to treat the person in front of them to medically care for them. The person in front of them, especially in our ears, you know, get them right and move on to the next person.

Annabelle Edge:
You know, and we're supposed to be able to be referred back to our primary care health provider. During this time, my own primary health care provider was sick herself and had to take time off. And so finding a replacement for her was challenging because I don't know why, but it was very challenging and there was sort of a carousel of replacements for her. You know, I anyway, trying to explain on the telephone to a doctor that your your nerve, your facial nerve issue. And I remember I did have a telephone conversation with a with a doctor through the telehealth. And she was telling and I was asking like, how long is this going to go on for? Like, I need some sort of medical help for this. Like, I went through this last time and it took almost four weeks. Now I'm going through it again. And she was just like, well, it's it's what it is. It hurts my , you know, it's that's normal. What I remember she ended up we ended up with the conversation with her saying it is what it is. So I, I ended up again at the E.R. again on September 16th. At that point, I saw a doctor who gave a really competent diagnosis. She recommended that I take a different antiseizure medication, which I had resisted previously. But there's nothing they can do for me at the ER. Really? I'm not going to immediately die from this. So can I ask you a question?

Trish Wood:
Because we're going to run out of time. And I want to get I want to get the whole thing. So are you still did it get better or are you still struggling with this?

Annabelle Edge:
I have been absolutely struggling for ten months straight. You know.

Annabelle Edge:
I I've always been a see the silver lining glass half full person. Well, I am not getting better. I know I'm not going to. I'm not a doctor. Right. And even medical doctors.

Annabelle Edge:
This is a fairly new thing. You know, there's there's differences in how doctors treat people with trigeminal nerve damage from us versus Canada versus U.K.. This is something that doctors are just learning how to treat themselves.

Trish Wood:
How are you treated when you suggest that this is as a result of the vaccination? Do people do doctors take that seriously or do they treat the the problem without making the connection?

Annabelle Edge:
The preference is to treat the problem without making the connection. And I, I have encountered both doctors who have been completely dismissive versus doctors who have been who are like, yeah, I know it's, you know, who have been very direct as to what could be the cause.

Trish Wood:
I'm desperate to get a question in from the panel for you before we go to run. So who is up first?

Preston Manning:
Well, first of all, you're very brave to tell your story like that. You shouldn't feel bad about crying at all. If people you worry about are the ones that have bad things and can't cry.

Annabelle Edge:
It hurts my my face, though.

Preston Manning:
Yeah. Yeah. But I guess my question is the same as Tricia is was there anybody in the health care system that recognized that what you're dealing with is an adverse effect from the vaccine, that anybody sort of acknowledged that that's what you had? Or was it more a denial of it?

Annabelle Edge:
So I actually my family doctor did actually report me as an adverse event. I do have an adverse event following the AEFI that I have and I have a letter back confirming that dated November 4th of 2021, I was listed as in the category as other serious, sorry, severe and unusual side effects events, other severe and unusual. So and technically and with the caveat that mine was classified as a neuralgia flare. So of the 311 cases of Bell's Palsy that were reported in Ontario, I'm not one of those. I'm in that top category. It hurts my my timer. I'm in that top category, the largest category of all the bars of other severe, sorry, severe and unusual events. The reason why I keep getting severe mix up is because there's also the category of serious right and.

Preston Manning:
Serious prescription that went along with it. So the doctor acknowledged that that was the connection was there. So what are you to do about that?

Annabelle Edge:
I don't think the doctors I don't know what they're supposed to do for me. I don't think they know what they can do for me. They can prescribe. The only sort of treatment for this type of nerve pain is the off label that is being treated now is the off label use of antiseizure medications.

Preston Manning:
That's a prescription for the pain, but not getting to the roots of it. Yeah. Sorry.

Dr. Susan Natsheh:
Thank you for your testimony. Can I just a quick couple of quick questions. I was just wondering about your consent before you were received, the injection. Was this ever brought up as being a potential complication?

Annabelle Edge:
No. But I actually when I went to go get the second vaccine, it was you know, I actually we rode our bikes down to the CN tower. I live out by the river, rode our bikes back and forth, me and my two kids to go get our vaccines. Now, I can't even fathom doing that type of a physical activity. I did mention at the time, I said, look, I've got I already have an existing problem here. You know, like I. I had a bad flare up the last time. Has. Is there any reason why I shouldn't be taking this medication? They had somebody there you didn't really want to seem. Didn't seem to want. You went and got somebody else. The other person was like, no, safe and effective. I don't think there are medical doctors, though. I don't. I asked them to note that I had had a previous reaction on the thing. I don't know that it was or not, though. I don't know.

Dr. Susan Natsheh:
Okay. And just my second question for you is, is paying for your medications now? Do you have coverage.

Annabelle Edge:
Or.

Dr. Susan Natsheh:
Not out of pocket?

Annabelle Edge:
No. And in fact, to get away from the. The mental side effects of the antiseizure medications. I'm actually was recently offered a topical Pregabalin or Gabapentin cream and that came out to $185. And I'm struggling to figure out how I'm going to pay rent on June, July 1st. Like. Yeah. Thank you.

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