Part I: Life with CRPS
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00:15 My name is Lorri Trasper and I am 50 years old
00:24 I am the mother of three and the grandmother of four beautiful grandchildren
00:27 My life has never been easy. As a child I had PVNS which is Pigmented Villonodular Synovitis in my right knee and I went through a lot of childhood surgeries because of it and as an adult it turned into something else that was rare called CRPS or Complex Regional Pain Syndrome which unfortunately is the highest known pain known to man
01:02 As a child my knees swelled up about the size of a volleyball when I was participating in sports in middle school my dad took me to a doctor and the first doctor did a surgery and found tumors but they couldn’t figure out what it was and then we went to a different doctor who again did surgery and could not figure out what it was and then we went to a third doctor and I was 13 at the time, the doctor’s name was Dr. David McCarty, a wonderful doctor who actually figured out what the problem was
01:39 I remember before surgery overhearing the doctor telling my dad that they might amputate my knee or my leg because of it because the tumors kept reoccurring and at that time they didn’t know
01:52 After surgery pathology was able to figure out what I had and it’s a very rare Giant Cell Tumor of the tendon sheath
02:00 It can affect any joint and mine was my right knee
02:05 What they would do is called a Synovectomy which refers to the destruction or surgical removal of the membrane (synovium) that lines a joint and they go and take the whole synovium out
02:11 Before the age of 18 I had eight knee surgeries all synovectomies some of them open surgeries, some of them arthroscopic
02:21 I had another synovectomy at the age of 21 and then at age 26 I had another one and then I had radiation for 30 days and the highest dose at the time that I could do and then it put it into remission
02:32 From the damage, I was told my knee was the knee of an old lady but I wasn’t able to get a knee replacement until the age of 44 after fighting because it also erodes the bone so I got that taken care of and five weeks after my knee replacement I was rear-ended by somebody texting and that started a whole new situation
03:03 I had a total of three neck fusions; two and one and then another one after
03:09 The first two because I made the bottom one go and I had a fusion in my back l4 to l5 and what I didn’t know and it took three and a half years to figure it out five days after the car accident I had a partial shoulder tear that was discovered before my knee replacement
03:29 I went to my shoulder doctor and I asked if he would sign a paper to give me extra time to type because I was taking online classes because my right hand it all of a sudden went weak which if I knew then what I know now I would have known that was a sign
03:49 The shoulder pain was more than what a partial tear should cause so he diagnosed me with a frozen shoulder
04:03 I never knew that’s not what it was. The pain started in my hand and spread to my shoulder
04:10 I had just kept having surgeries fixing everything and everything kept getting worse and worse
04:16 I always consistently complained about my hand and would bring up my hand at doctor’s appointments like it felt weak or it had a mind of its own
04:29 I had a picture I showed my doctor with a cut up hand because it had moved and broke a glass and it was all cut up and you know I remember them telling me that shouldn’t be caused by my shoulder you know
04:43 There are a lot of things that I wish I knew because I think I could have got diagnosed quicker
04:51 Unfortunately with CRPS you have a three to six month window to stop it and put it in remission
04:58 In the beginning, it was three and a half years out before I got the diagnosis of my right hand right upper extremity I should say but it started in my hand and then I was shocked with 220 volts of electricity and it spread to my whole body
05:16 So I have full body CRPS and that shock was a an accident that was caused by a dryer
05:30 I have two implanted nerve stimulators. At that time I had one and it actually blew out my implanted nerve stimulator and I had to have surgery to replace the lead that burned out and then at that time that they did that surgery they put in the cervical nerve stimulator because the lumbar was the first one
05:51 So I now have two implanted nerve stimulators
06:05 It took six years to the day of the accident which was February 17th of this year to determine that the CRPS had spread to my full body because I was having trouble swallowing. I was having trouble with my urinary tract and I had gastro problems
06:23 My liver was enlarged on a CAT scan and I’m not a drinker at all and finally my doctor who has been great through it all but you know he’s a family doctor
06:35 He sent me to a rheumatologist because he couldn’t think of anything else to test me for and I went and saw the rheumatologist and he said I didn’t have anything
06:46 He did say that I had a spread of the CRPS to my organs so it’s called central sensitization I believe when it goes full body
07:03 There are no fda approved treatments for CRPS
07:07 I can tell you what I have tried
07:10 So during diagnostics the beginning I was doing a stellate ganglion block (also known as a sympathetic block) which is an injection of local anesthetic into the front of the neck
07:16 I also presented with the telltale signs by the Budapest criteria. I lost all the hair on my arm. My nails changed
07:25 My hand was swollen and red compared to the other one
07:30 I had excessive sweating from my neck. I ended up having to cut like my hair has an undercut because it sweats back there
07:46 The stellate ganglion block is what solidified it for my doctor and then that’s when we put in the cervical we were working to put in the cervical after we had the actual diagnosis
08:06 I have had 39 surgeries
08:17 It’ll fix that if we give you these cortisone shots or steroid shots
08:22 It’ll fix that if we do radio frequency ablations. It’ll fix it if we do physical therapy
08:28 I did everything. I never turned down anything because I wanted life
08:34 I have had very little quality of life anymore. Today I had to drive to North Aurora which is 55 miles from my house to go to a doctor’s appointment and and kills me it kills me
08:48 I mean I’m still in the vehicle obviously but that you know driving kills me
08:53 I used to drive non-stop 30 hours to Mesa, Arizona to Kissimmee, Florida. I would do non-stop now traveling to Utah for ketamine treatments because that’s the only affordable place that I could find it that was within my budget and it’s not even a budget. I had to take a loan from my family and the worst part of it is I dread the drive. It’s 19 hours to drive there and I allowed myself four days because I’m really afraid I won’t make it and I have to drive because you’re supposed to have somebody to go with you and I don’t have anybody to go with me so the only way that they would allow me to do this is we’re going to turn my minivan into a camper and as soon as I’m done with my ketamine they’re going to help me into my van to sleep it off. That’s the only way I can make it work
10:29 I’ve signed up for every clinical trial that’s come around. I was able to convince a doctor to give me low dose naltrexone which Stanford University is currently doing a study on. They use it for addicts because at a low dose it can trick your mind to not feel the pain
10:54 I didn’t have the availability to drive back and forth to Stanford
11:22 I’m at a point in my life with having 39 surgeries and five of them just because batteries for my nerve stimulators migrating that I can safely say that I do not want any more implanted devices
11:48 I’ve had batteries migrate where they’re leading up against my sacroiliac joint and causing all this problem down my leg
11:55 I had one migrate behind my spine and I couldn’t even lay down or lean back because it was right behind my spine
12:07 If you are within the first three years of getting CRPS absolutely look into nerve stimulators. You have to meet the criteria and then you have to go through a trial now
12:19 Different companies have different requirements. Mine required a seven day trial where they took me into a procedure room and through a fluoroscope they installed the wires into my spine which came out and was attached to something that was on my hip and if that showed above a threshold of improvement then they went ahead and scheduled the surgery surgery
13:08 Everything you do it’s just about being careful because if you rip them out you’re having surgery again
13:22 Invest in a recliner if you can because it’s going to save your life and if you are over three years after CRPS diagnosis I wouldn’t recommend it because a lot of research has been done and they say once you are past three years of diagnosis it really isn’t that helpful
14:02 My baseline pain is eight with my nerve stimulators on
16:03 Before this I had extremely high pain tolerance. I have lived with pain all my life and acute pain does not affect me
16:10 It’s the chronic everyday pain that affects me so I have extra anchors because of my pain tolerance for acute pain and they stay in place but while everything is healing you got to be very careful the first four to six weeks. After surgery be really careful because you don’t want to move them 18:18
six months and don’t want to do anything
18:20 It’s been six years since the accident
18:26 It’s been over six years
18:41 I was actually driving for Uber when it happened so I was working when I was rear-ended. I had two passengers in the back of my car
18:54 I worked for Verizon. I was a district manager. I ran stores
19:07 After my knee replacement I couldn’t do all the standing so I started driving for Uber because that was something I could do
19:15 My second day of driving is when it happened
19:18 I continued to work for maybe three or four weeks and it just got so hard that I couldn’t do it anymore
19:45 I tried to do a few different jobs, then I finally stopped and I’ve been fighting social security for years for what I paid in for all my life in case I had a disability that stops me from working and now I have a disability that stops me from working and I have been turned down
20:03 I have sued them in federal court
20:07 I try not to give up because this is what I’ve worked for all my life
20:13 I mean it’s sad because I see a lot of people out there that don’t have it nearly like I have it and they don’t have any problems it’s just frustrating you know
20:25 I’m a smart woman and I think that is used against me
20:30 I have six patents and my last denial mentioned that I had six patents. Okay so yeah I have six patents but if I physically can’t do anything to bring them to fruition they’re nothing
20:44 The pain is real it’s there it’s with you every day and you have to manage through it and it’s difficult and it’s a full-time job
21:13 There’s good doctors and there’s bad doctors. Let me just make that very clear, I have a lot of good doctors but I’ve also dealt with a lot of bad doctors
21:48 Some doctors think you’re there drug seeking
21:52 I don’t even like to take opioids because I build up a tolerance for them so quick it’s just not worth it
22:55 So right now I’m taking nortriptyline and I have to take it for 90 days. I always have to jump through hoops to try something
23:14 I’m very non-responsive to a lot of medications
23:17 I had a gastric bypass so I don’t absorb correctly so I have issues you know with with certain medications not working for me
23:54 I deserve to be treated better than this. I am not like the regular person I stand for principle
24:05 I educate myself on CRPS like I’m a doctor and I’ve had been confused as a doctor by many people or what part of health care are you in. I’m not. I have to learn my illness because doctors don’t know about it. I have to educate doctors about it. That’s the biggest thing about this is a lot of doctors don’t know about it or they’ve never seen it or they’ve never treated it
24:29 It’s rough and I’m just thankful I can advocate for myself because I know me being able to do that is good and I know there’s lots of people out there that have no idea how to do it for themselves
24:45 I wish I was in better shape because I’d advocate for everybody if I could you know and that’s part of you sharing your journey here today
25:17 Through the whole I have the greatest mental health care team ever
26:00 You go through the process of… is it in my head? Am I drug seeking? You know you start to you start to second guess yourself because you go through so much and you hear so much about how it’s in your head how they can’t find anything you know read your charts and it says exacerbation of this or psychosomatic that you know what I’m not crazy
26:25 I’m just too smart to live like this and to see them treat me like this that I refuse to not fight for myself
26:34 I literally am advocating for my life every single day and I’m willing to help anybody if anybody wants to email me I will help
28:29 I wear long sleeves because the wind hurts me
28:55 I had to change everything about my life because of this and I didn’t understand it. Now I understand it because now I know what it is but it’s really scary when you don’t know what the heck is wrong with you and all these things are going crazy and it doesn’t make sense
29:14 It really doesn’t make sense until you get that diagnosis
29:39 You know they tested me for all the autoimmune diseases and I never had a positive ANA (antinuclear antibody test). They tested me for everything
29:46 And then one day I started making a list of what I thought were symptoms so I decided to put in there that I lost all the hair on my arm and then I thought well I’m already past menopause because every time I brought up the sweating it was menopause
30:03 So I had the sweating and I added those to symptoms I went to Mayo Clinic website and they had a symptom checker so I put in everything I thought that could be a symptom and it brought up a list of things and I actually had a screenshot of it somewhere and we had checked for everything except for CRPS on that list so I went to my doctor and I asked could it be this
30:37 So my doctor sent me to a different doctor, a physiatrist
30:42 That physiatrist asked me what I take for pain and I said I don’t take anything for pain I only took opioids after surgery but after I got shocked I did take them for about a year and a half straight because it just went crazy
30:55 I don’t take them now. Sometimes I wish I took them now on the bad days
31:03 So I went to Dr. Painter and he said what do you take and I said well I don’t take anything for pain unless I have surgery and he said you know you’re not taking Lyrica and I said no
31:44 He says well you need to be on Lyrica
32:18 Within 24 hours I was on Lyrica
32:47 So that’s what I’ve been on for three years and you think it’s helping but probably not enough because it’s probably dosed inappropriately
34:30 We are talking to our clinicians and they’re not hearing it or they’re seeing what they want to see which is unfortunately not the case
36:59 I want to live. I want to take care of my grandkids. I want to be a normal human being again even if it’s limited
37:25 That’s the hardest part is depending on people especially going through a pandemic because boy did I find out a lot during this pandemic of you know how hard it could be
42:12 I would not wish it upon anybody else but I mean it’s from skin, it’s from joints, it’s from muscles, it’s from everything and everything hurts and it’s non-stop constant and I don’t think they’ll ever understand unless they feel it and I don’t want them to feel it
43:24 I’m the most positive negative person you’ll ever want to meet. Ty not to be negative but my life is a lot of negativity but I try to be positive and I really hope that at least one person hears my story
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