Chase Crowson and Christian Duncan

00:37 My name is Chase crowson. I am 40 years old. Today is January 21st, 2010. I mean Atlanta and I'm here with my husband Chris. My name is Chris Duncan. I'm 34 years old today is January 21st in Atlanta?

01:03 So what can you tell me about your illness? I've got to congenital conditions. Meaning that I was born with them one is called Arnold Chiari malformation and the other is called ehlers-danlos syndrome. I was probably born with them, but I didn't develop symptoms until I was 33. So what were those symptoms? How did they start they started probably so they started in 2003 the kind of ramped up in the beginning it was headaches and I started getting more and more headaches over time those headaches kind of escalated. I guess you'd say and into what we thought were migraines.

01:58 And it was probably got sweat out. When was it that it started getting to the point that we that we knew it was beyond migraines.

02:10 I think that might be about the time when you started taking narcotics for the pain on a regular basis consume 2000 late 2004 early 2005. I started developing really strange neurological symptoms that you know when you got migraines their migraines, but what started happening with me is I would

02:38 And help me with what I have what I miss. You told me a few times per year. We would lose your vision for a few minutes at a time. So I have had some vision loss where I would do, you know, just the blind. I had some that ringing in the ears and loss of coordination loss of balance had significant drops in my energy level.

03:11 Random the bending over and standing up and then falling down. Yeah, I would do that various muscle and nerve pain that made no sense, you know how to wake up in the middle of the night. Sometimes just screaming and pain going to because my legs hurt.

03:37 And you know, this is crazy crazy neurological stuff and so by I think I went on FMLA Family Medical Leave Act in 2004. Maybe I was working full-time, but I went on FMLA intermittent FMLA so that when I needed to you know, I'd be able to not go to work cuz I was using you know, he used to be on my sick time that I had available so that and then in 2005 kind of went real crazy and I think it was 2005 when I went on sort of Narcotics, right and the doctor you have a with that wrapping me up and it wouldn't control the pain and finally got to the point where she said, you know, we can't do anything else with your pain and unless we

04:37 But you on a level of Narcotics that you're not going to be able to function. So I went on disability from work and at this point we didn't really know what was happening before I was diagnosed.

04:54 Probably had I don't know. It doesn't MRIs close something like that. Lots of lots of time and scanning machines.

05:06 So then I went on disability in June of 2005. And at that point is that when I switch to methadone for the know you of you were taking 30 milligrams of OxyContin before you went on disability and we started to office 60 as soon as you wanted us to building that quickly went up to 90 within a month.

05:34 And then it wasn't until late September where we just had there just wasn't any point in giving you any more Oxycontin.

05:44 Where were you hurting but was hurting?

05:47 Gosh, the I mean pretty much everywhere but the the main points of pain where my head and my neck the head of the neck were severe and debilitating.

06:03 So when I went on disability is I think when I started using a wheelchair.

06:09 Yeah, not too long after you want a disability if you got a wheelchair because I just didn't have the strength to walk and the passing out. Obviously, I know I shouldn't be walking around if I just drop suddenly. So we don't disability ramped-up on the pain meds kept ramping up and ramping up and kept outgrowing it. So finally, oh of missed a missed a step of when we were trying to get me diagnosed.

06:41 We went to tons of neurologist.

06:48 Upload narrow crazy specialist in and everyone said that there was nothing wrong on. So how did how to do a you end up finding out what was actually going on? I at one point one of my tentative diagnosis diagnosis was pseudotumor cerebri cause of swelling of the brain. And so I had MRI stand for that and

07:23 For whatever reason the neurologist came back and said maybe you don't have that and so I started doing research online and you know how it go online and you're looking up one topic and it leads to another Topic in that leads to another and I started reading it formation.

07:43 About Chiari malformation and I realized that

07:48 It's me.

07:49 Now wasn't there a report that actually had that on there that kind of LED you to search for that at the time that that I became convinced? That's what I had my doctor my GP. She actually had look back at Mr. MRI report and it showed that I had a Chiari malformation but there's a it's a very misunderstood condition and a lot in urologist will tell you that it it doesn't cause any problems and for some people it doesn't so ultimately what it is.

08:28 The cerebellum the which is at the back and the bottom part of your brain is is it hernia is down into your spinal column. So, you know, obviously if part of your brain is sinking down into your spine out of your skull. There's something wrong with that you could do that and obviously at that point, you know what my GP said. Hey this says Chiari malformation and so I started looking for we start looking for somewhere to go to treat at and

09:09 I found that the best place to go was a clinic in New York called the Chiari Institute.

09:18 Who specializes in treating Chiari? So we went to New York?

09:25 And one of the things that was you know, we got that diagnosis confirmed in October of 2005. But one of the things that still didn't match was why was I having this and that pain? You know why why is my neck hurting that's not associated with there was there was one thing I remember was really specifically about that trip up to New York though. And that was after our house like we were in the office like 7 hours I think and we went out to go get something to eat.

10:00 Right after we left. Do you remember what happens if I don't remember you started crying just walk we're walking down the street and you started crying because you suddenly had validation that there was something wrong, not just you know, I don't know you might have migraines or something. We don't know. You know, I remember it was right when you're getting close to the restaurant. You were following on the street just happy because it is sort of strange because you find out for sure that you have some horribly debilitating condition and you were happy, but what some of the doctors said that it was all in my mind when I felt like I was going crazy. You know, how can I be imagining this you had pointed? It's actually manifest and I feel it physically feel this.

10:53 So what do you remember about the appointment when we went up there for that serve Marathon session? Well, you know one of the things that that it did probably a combination of the having the condition of Chiari and another incredibly high amount of Narcotics was that I don't have much memory.

11:18 You know, I remember kind of everything is a big picture. I remember.

11:27 I remember blankets of pain.

11:31 But I don't think

11:36 It's kind of one of those things, you know, we talkin and you start telling a story of a man who knows of something that might spark a memory and it's kind of like a vaguely remember that.

11:48 So you tell me about that. What do I remember about? The first one was a nurse practitioner and we must have sat in that office for 2 hours answering every question that you could possibly have asked to you by someone the medical profession. And then right when we were getting up to go back out to the lobby to wait for a second appointment. I think you dropped your bag or something and you've been over to pick it up and stood up and I saw that that's what I look that you had that you would get in your eyes and on your face when I knew you got about two seconds before you drop and so I got behind you and you actually knocked me down as well. And then and I've caught you dozens of times by that point, but it was sort of funny because I mean it was almost like you were in the hospital and someone yelled Code Blue.

12:48 Nurse was screaming out there saying they were people flying down the hall and I might know know know he'll be flying in about 30 seconds. It will be okay.

12:58 So you not going back to the United the illnesses, you know, we've talked about Chiari malformation.

13:07 So we got that diagnosis up at the Chiari Institute in New York in October 2005. And at this point you have I. I knew there was a disconnect somewhere because nothing was explaining my my neck.

13:22 And

13:25 So in October, they typically correct me if I'm wrong, but I think typically the Chiari Institute schedule surgeries like several months out, but they wanted me back in December so they wanted me in 2 months. Well, that was Remember December. What's your prerequisites archery? Because we what do you mean prerequisites or when we went up there? We found out that in addition to your Chiari malformation you had three herniated discs and they couldn't operate on the back of your head until they fix their herniated discs because of the way that have to sort of

14:03 Put you on the operating table. So we had to go up for surgery. Number one in December. And that was the that was the baby surgery. If you could say I guess said that was when they when I had the 3 level Fusion to get right so they fuse my vertebrae from D3 to 4:45 and 5 to 6. So that was getting my neck ready so that they could do you know, the

14:31 The brain surgery and I don't remember when it was exactly if it was after the first the baby surgery the spinal fusion was it after that? They came back and said you have another condition. You've got either Stanley syndrome what they said at our at our first consult was you need this surgery to fix your neck and then we can do the surgery to fix your head and then if you get better and your better a year out, you're probably fine, but if you don't get better or you take a turn for the worse, then there's his third surgery that we may need to do some time up to a year out.

15:14 And it was during the right after the second surgery where he where the doctor came out of the of the operating room. And I remember the first words that he said where man that was a bitch of a surgery in this really awesome Italian accent, but the man that was a bitch with surgery and it has point. I'm just sort of well, I guess he's alive since that was the first thing you said in. I'm sorry, you know and

15:46 I need the new told me he's like, yeah that that third sword. You're going to have to do that next week.

15:53 Pens, I was so just going to folkestone practicalities that point I was just like okay, I got to call the hotel got to call the rental company car company got to call the Arizona and you know, and I don't think I don't think you really knew that. You would need to have another surgery until the next day until you were in the ICU.

16:16 So the year we talked about the first surgery instead of the second surgery. So the first surgery was too kind of stabilize my neck. The second surgery was the brain surgery the witches called a posterior fossa decompression.

16:34 And I think you were probably are better at describing the surgery tonight. So one of the many things I picked up my pick up during the summer. So they remove a portion of the back of the skull and they cut through the the membranes to get down to the brain and they essentially burn off the parts of the cerebellum that have taken a nosedive through the bottom of the skull because they're not essential to brain operation or function. And so then after they do that, they they go down to the very first vertebrae in your neck which is sort of shaped like a donut and they do something that makes it look like someone's taking a bite out of the back of the donut and that's just to free up some more space and then day that's called.

17:34 Laminectomy and then they slap a plate of some sort on the back that gives you more room and I think they so something into the lining of the membrane but nice hat to give it some more room as well. So you just create some extra space back there for all the parts so they don't have to get squeezed out the bottom of skull cuz I've got too much brain tumor in brain to contain.

18:03 Set a second surgery that was in February of 2006. And at that point when they did the surgery is when they said I think he referred to as it is. We're going to have to do that other surgery a week later. So that's when they came back and said this is ehler danlos syndrome because your neck is my neck. Quiz pancaking under the weight of my skull.

18:37 So if my Net not been able to support my head that I think explain some of the symptoms that Chiari didn't quite explain it also created a condition called bachelor invagination, which is where your brainstem gets compressed with a

18:57 I forget what it's called as part of that C2 vertebra goes shoot something is poking on your purse. You had your brainstem poke Don in your spinal cord squeezed and all kinds of crazy Mass. So then the third surgery was the last surgery and that was a cranial cervical fusion. So what they did is they took my skull and they fused it to my neck. So everything is fused from C5 up on the back on the back.

19:34 So it's

19:37 Get some one big piece of Humpty Dumpty.

19:42 Now there was there were a few things a few really bad times in the hospital and I remember being just running around not really knowing what to do. The first one I remember is when you woke up from your first surgery. What do you remember about that?

20:01 I woke up screaming in pain have a very vivid memory of that which we later realize that because I was on such a high I would I was on at that point enough methadone to support for for heroin addicts.

20:23 So, you know when I wake up from surgery and they've given me some morphine they might as well not give me anything that you were the boat prove man that couldn't control your pain without stopping you from breathing pretty much so I guess

20:41 What I experienced when I woke up. It's like, you know what you would experience if you woke up from an operation and had no, Anastasia.

20:50 I remember screaming in pain. I remember.

20:54 You know in the end I see you in everything is kind of open so they were there curtains between people but there are a lot of people in there and they became very adamant and trying to get me to quiet down because I was disturbing the other patients. Yeah, they actually came and got me because they were all really know. You can only be in there for five minutes and we'll take small groups back and you know, you have to go back with a small group Sunday. They actually came and found me and said you need to come with me right now because I think that they thought that was the only way she'll you up cuz I was screaming for you.

21:36 So remember that

21:39 I remember you sitting there.

21:42 And trying to comfort me.

21:46 And I remember that it what you got.

21:59 And he never came back to Atlanta.

22:03 After the surgery in December and in a trying to get me recuperated and rested and ready for February, so we come back and I know you know in February we got back up there and I have but you know, next time is not just a spinal fusion. Next time is brain surgery and it was so scared.

22:27 I can imagine how he's going to make it through that.

22:32 I think we actually ended up backing you off of your pain meds a little bit as we think we can get very far. But I remember thinking less the less you have going in the more that they can give you when you're there. So, maybe I'll make a difference. I'm not sure it really ever did.

22:50 But you and you got a lot better after your first surgery which was completely unexpected. There was like 3 weeks when you were more live limit on seen you in months and then you start going back down hill again. And by the time I flew out to New York, you were pretty much in the same state you were when we went up there the first time

23:15 Stuff to talk about

23:21 What do you have any pleasant memories from that time?

23:26 Yeah.

23:28 I remember.

23:33 I remember being in pain that you know, which was the 24/7 thing and

23:41 I remember that, you know occasionally I would

23:46 Just crack an in and I can't do this anymore. I can't do this. I can't take this.

23:52 And I remember when I when I cracked.

23:57 That um

23:59 You would always call my face and tell me that.

24:05 Will make will make it through that.

24:10 And that's the only thing I could going to.

24:20 Yeah, and I remember you would.

24:24 A lot of times and I've tried everything for the pain.

24:31 Isom

24:33 You know warm compresses and

24:37 A variety of things but you know, sometimes I just wanted you to hold my head.

24:46 And even though it was I was in agony Pleasant memory.

24:54 But probably the most Pleasant memory that I've got.

25:01 And I don't know what surgery this is. You probably know.

25:05 Was when you had to sleep in the chair beside my hospital bed when I was in recovery. Bright chair and

25:18 And the

25:22 You know, you are a little ways away from the bad, you know, I can't exactly move around much and I couldn't reach out and touch you and say you would fall asleep.

25:36 And I I couldn't get to you so we took out.

25:40 What is the stuff called the rap like a ace bandage and it was your idea and you wrapped it around your wrist and you gave the into me and he said, you know when you wake up and you need me just ball.

25:57 Yeah, that was some that was the chair sitting upright that was actually the end of the first surgery and it was the last night that you were on the general floor the day before you're discharged and they did not have a single thing any of those comfy recliner turns into a bad thing. So I ended up sitting sleeping in a chair just like at a 90 degree angle, but when we went up in February before we check you into the hospital, I remember going to going to the drugstore and getting that because what you may not remember was during the first time when I would fall asleep you would throw things at Ono.

26:44 Roll the toilet paper roll pillows are my pee little easier for you than trying to

27:02 The reason it's a pleasant memory for me though is and I do remember this. I remember sometimes.

27:08 I would wake up and my first reaction would be I need to get you up, but I would look over and you were laying there and get a snow our end and you know, your give got your arm popped out and you know, you're basically on a rope.

27:32 I would I would try not to wake you up cuz I like to just sit there and look and watch it like that.

27:42 I feel bad when you tell me things that you know, sometimes you tell me things that I did and I don't remember like throwing stuff out of here.

27:51 And I just feel horrible because

27:54 You just took something to eat. You took such good care of me.

28:00 Thank you, sweetheart.

28:05 So we we got the third surgery done and then we went back home.

28:13 What do you remember do you remember?

28:16 And then going forward there or is there a point where your memory start feeling back in?

28:24 I don't know. It's all kind of a blur.

28:30 I don't know if I can definitely say when my memory returned.

28:37 I know that and I remember some things that were different after I got back like, you know, I lost taste all I could taste was sweet and I can only tell you I was scared. I was going to be like that for the rest of my life and you live on fruit smoothies and popsicle.

28:55 But I don't I can't say that I remember a lot. I can't say I remember a lot really but again, there's a kind of thing. You'll tell me you about something and I'll be like how I kind of remember that but in my memories don't didn't fully come back until you know, I got off for the methadone.

29:23 Which was an experience and of itself.

29:27 Yeah, I mean I was

29:30 Extremely addicted physically dependent

29:39 But that was hard. I'm sorry coming off of that. Yeah, we we started tapering you off of it. I think right when we got back.

29:48 And it took from March until

29:53 Since the October to get you all the way off of all the narcotics.

30:00 Actually, just thought of another Pleasant memory that I have.

30:06 Here before I went on disability in June in 2005 when I realized okay, you know, I'm not going to I'm not going to be able to work for much longer and

30:21 I came home and I remember sitting out on the patio and maybe you came home from work or something and came out and joined me in and I said, you know of I can't work anymore. I got to go on disability.

30:36 And was it that that that's when we we talked about the things that your list of stipulations so you came with a list and you said okay if you're going to go on disability and you're going to get a increase in of these pain meds, here's a list of things that you've got to do.

30:57 And one of them was to sign sign over durable power of attorney to you so that you could make all the decisions about my health and and I don't know how much longer it was after that but one night you were in bed and I was out on the patio. Probably smoking a cigarette and

31:18 I remember it hit me just like if I'm signing everything over to him.

31:25 You know, that's married that's married and

31:31 By God, why are we married and I know it and I went in and out and I woke you up at 12:45 and you had to get up and you had to come outside and and I asked you what you marry me.

31:48 And I

31:50 When we we talked about never having a ceremony, but of course we didn't decide to get married until November 2006. You've talked about having a ceremony and got all excited about it. I was of the opinion that that might be a little bit more than you can manage in your current state. But yeah, it was after the whole mess was done.

32:16 Text Bri ended up.

32:19 Saying our vows to each other.

32:23 So how how has this illness changed you?

32:29 Well, it's changed me from a physical perspective. You know, you might not think that.

32:38 Not being able to turn your head. Is that big of a deal and it's huge. It's really age, you know it because of the skull being fused to the neck. I can't turn my head.

32:50 And the thing is, you know when you

32:53 You don't realize it. But you know, you did something. It's almost like an automatic reaction that your body has if you know, you know, there's something you see out of the corner of your eye or there's a noise or something. It's to turn your head and I still have that reaction. But because everything is fused it creates muscle strain, when I do that, so, you know even moving my head. Anyway, it's to the right or the left can screw me up for the rest of the day. So it's changed me in that in that manner.

33:27 It has changed my memory a little bit. I think of my ability for language. It's it's gotten better every time.

33:40 He was so it's you know, it's left me with some physical disabilities that Euler's danlos. I don't think I have actually Define that yet, but it's a connective tissue disorder which basically weakens all the connective tissue in your body and your in particular cuz there's a bunch of different versions. And where is your version? You have over stretchy collagen, right? So, you know, obviously it affected my neck and tremendously but it also affects my other joints so it can be difficult for me to move around as difficult. You know, I can't pick up things and you know, I can't do a lot of chores. So it's affecting me. I'm in a lot of physical ways like that.

34:29 It's it's affected me emotionally.

34:34 It's

34:36 Ben huge, I mean, it's the biggest thing that's ever happened in my life when you were sick.

34:47 If I have you know, if if you hadn't been there I would have I would have committed suicide.

34:54 But I knew I couldn't do that to you.

34:59 But I didn't want to live through it and I didn't say in the end. I didn't see a light at the end of the tunnel before I was diagnosed. You know, I think we both thought.

35:14 You know that whatever was going on with me was accelerating and it was fast and that you know, I probably was going to die.

35:23 I think about I do think about you in my life span and

35:32 I try not to think about it too much, but I do.

35:37 Well, you didn't die. So that's nice. I appreciate that certainly. So how do you feel about being a survivor of all this?

35:46 I'm proud. I'm damn proud.

35:50 I've got a on my neck. I've got a 3-inch Scar from the first surgery and going on the the back of my head down to just above my shoulder blades a good a 13-inch Scar and

36:05 I love them because it it shows people that.

36:13 You know what? I'm strong and I'm stronger than I ever in my wildest dreams imagined that I could be and I'm proud of that and I know that's why I got Iqra Survivor tattooed on my neck because people don't ask questions and I want them to ask questions, you know a stranger that comes up to me and says, excuse me. I'm just curious what you know, what happened?

36:43 I want to talk to him about it. You know, I want to thank you for asking. I like to tell my story I'm proud.

36:56 That was a I remember when you got that tattoo you were right. It was sort of a rash decision you were with her friends and at a tattoo parlor and then I think I'll get the easiest tattoo ever got cuz I can't feel the back in that time. No know when I was going through it. I thought you know, I just couldn't fathom how I was going to make it through it. And now if I had some magic ability to

37:36 Go back in time. I would actually choose to go through it.

37:43 It made me.

37:46 Into a strong person and it made our relationship, you know it it's solidified our marriage if we can go through that and there's nothing that we can guess your yeah, cuz we came close to splitting up not six months a year before this whole thing blow up in our faces. Yeah.

38:08 We met online, I had a I had put a personal ad up and later in the day. I went and thought about something I wanted to change and I went ahead and made that little change and then I saw some blood match yourself button and I clicked it and his is one of the first profiles that came up at night and spent about three hours writing the perfect introductory email and this so endearing today. I love that story.

38:40 What did you say and then do you remember the email what you said it? I was you know, I was the only thing I remember right off hand. You had said that you were vegan and I remember sitting. Well, I'm not thinking but I sort of culinary adventurous so you can try new crazy Foods or something like that. I remember the letter that Hook Line & Sinker was you know, you saw for my profile that I was a huge animal lover and so you said that you had a cat her name was Oreo and she is better than you or I and I was sold.

39:29 Singing hello. Goodness. I was a long time ago December of 2002 married for three together for 7.

39:45 Where did you get married?

39:47 We got on a plane and went to London and then the first full day. We were there. We took our video camera. We just bought and a little baby tripod and stuck in the middle of Trafalgar Square and said our vows to each other and exchanged rings and then we wouldn't have some beer afterwards. Yeah, it doesn't matter if it's not official or legal cuz no one can say that we survived in My Health crisis and made it through as strong as we are and then we can say that's not marriage.

40:33 Thank you for a

40:36 Thank you for the conversation, honey.

40:39 Absolutely, sweetheart. Thank you for talk with me.

40:43 Love you. Love you too, baby.