International Research Foundation for RSD/CRPS


Video Transcription By:



Lori A. Eley, RN

Wife of Physician husband afflicted with RSD / CRPS and

advocate for more research on this disease.




High Dose Ketamine Research


Elizabeth:  Well, I had gotten to the point where I felt like I really didn’t have a life. Being stuck in a bed or stuck on the couch for most of your day, you know, is not how I wanted to spend the rest of my life. I had no doubt that I needed to try something and I felt that even if it was drastic, I was at that point where I felt so desperate and that the RSD was really spinning out of control.


Everybody, I think, has the same feelings that they can just tell I’ve been given a second lease on life.


Narrator: Dr. Anthony Kirkpatrick is a pain management specialist experienced in treating patients with Complex Regional Pain Syndrome at the University of South Florida. He recently sat down with Elizabeth Jones and encouraged her to talk about her experience with the High Dose Ketamine Trial.


Dr. Kirkpatrick: Okay, the reason we are here today, Elizabeth, is to get your experience, having gone to Germany and participated in the High Dose Ketamine Trial there. We agreed at the outset that although you’re doing much, much better now, that you will be as candid and open as you can. And the purpose for doing that is so that anyone, including physicians and patients that watch this video presentation will be able to be more informed about making a decision whether this is for them or not. I think the bottom line here is that it wasn’t a picnic for you and that’s sort of an understatement, and, so people really need to know what they’re going to be confronted with.


I think a good place to start would be...if you can just give us the history of had an injury, when it happened, just give us an overview of how the disease process developed in your case and what your activities were like, how you were functioning just before you went to Germany, and the types of treatments that you had along the way. If you can do that I think that will give a little bit more of a context upon which to appreciate this really unbelievable decision that you had to make of whether to go to Germany to participate in this study.


Elizabeth: Okay. Well, it all started in May of 2001. My husband and I had just been married for a year and I was involved in a car accident that fractured a very tiny little bone in my ankle. The doctor said I should be able to walk on the cast the entire time, four weeks, and I would be able to go back to work in, they thought, a week. And, instead, it just kept getting worse and worse and worse. And, I know the day that the cast was put on the pain was far greater than the initial injury. And we had to have another cast put on because it had cut off the circulation to my leg and ever since then it just progressively spread and there wasn't much time after I had the cast off where the pain wasn't spreading up my leg.


So, you know, first it was my ankle and my foot, that, I could barely touch the ground without sharp pain shooting up my leg. And, I mean, it was almost like seeing stars, it was so sharp and very burning and very deep raw kind of a pain, and slowly spread up to really involve my knee, to where it was difficult to bend my knee, and then up my leg. My hip ended up being one of the worst things that I dealt with all throughout the entire process.


The RSD eventually spread up to my left arm and left side of my face shortly after that, which made it very difficult just for speaking, eating, you know, everything like that, brushing my hair since it was so sensitive. And then the RSD did spread slowly to my right arm as well, which I'm right handed, so driving and all that kind of went out the window. It certainly wasn't easy. I was very used to having a very high paced life. I was doing interior design for Ethan Allen right before this had started and I would have a week where I could barely get up off the couch because the pain was so great that it just brought tears to my eyes.


And, you know, I spent four years going through various treatments, I know we were lucky enough to find you on the Internet, because the doctors in town that I lived really didn't know much about RSD or what to do with me, so they just tried medications, Neurontin, Clonidine, and nothing was helping the pain, so I started having the nerve blocks done with you and got some results there and then went ahead with the sympathectomy on my left leg in attempts to kind of curve the spreading of the RSD. I was hoping to stop it. And, we tried so many nerve blocks and, you know, weren't really making much headway. The RSD was still spreading and my mobility kept lessening and lessening as time was going on.


Dr. Kirkpatrick: So, before you went to Germany, if I understand your situation, you had symptoms in really three extremities, okay.


Elizabeth: Uh huh, and I believe it was starting also in my right leg. I was starting some pains there and I know when I went to see Dr. Schwartzman up there he noticed some discoloration in my right foot and leg as well.


Dr. Kirkpatrick: So, what we have here is a situation where you went through quite a bit of treatment including invasive treatment, surgeries, nerve blocks, medications, and the disease was progressing despite all these very aggressive interventions. And so that was the setting upon which you made the the decision. Before you made the decision what else did you have to consider. I mean you're going to Germany, what went on in your mind? What were you thinking? What about the expenses?; What about the culture? Give us some sense of what you were thinking before you went there. And then I'm going to ask you was it what you expected, was it better or worse?


Elizabeth: Ok. Well, I know going into it I had no doubts that I needed to try something, and you know, I felt if it was drastic, I was at that point where I felt so desperate and that the RSD was really spinning out of control. My husband had to miss so much work, we were in and out of the Emergency Room, the pain would flare up due to a thunderstorm that would come through here, all the Hurricanes. I know that was a very difficult time. And it started triggering migraines and going on for days where I was just throwing up and unable to move, and on the bathroom floor. That's no way to live.


We'd been following the entire time on the Internet about the coma treatment. When we set up the appointment with Dr. Schwartzman in Philadelphia, we were thinking he was going to recommend me for the low-dose treatment that they were doing here in the states and as soon as he evaluated me, he just said no, he just said look, you're young, you have a chance of getting your life back, and he said I think this could be successful for you.


So, we had already done all the research about that as well. I just didn't know that it was a possibility for me. Financially, it was something that we, my husband and I, couldn't afford to do. But, my father has been watching this whole process go on, and me just getting sicker and sicker. And at the time we had to decide where the money was going to come from and how we were going to do this. My mother was just passing away of cancer, so he kind of felt, look, that there are too many people in our family that are sick; you need a second lease on life. So, he did things that he had to do. He didn't just have the money at his disposal, but he made things happen so that we could go, because he knew it was right now our best option.


I wasn't nervous at all going into it. I was more excited, and I was trying not to get my hopes up too high, of course of the hope to just wake up and be completely pain free and I could immediately do cartwheels, but it's not quite like that. Traveling over there was pretty difficult. I know for us we came from Florida so it involved a thirteen hour flight, straight shot, and then a two and one half hour train ride after we got there to get into Saarbrücken. And we found most of the people in Germany to be very nice.


Dr. Kirkpatrick: Excuse me for interrupting you, because I can tell you that most RSD patients can't fly for fifteen minutes on a plane, so how did you deal with that?


Elizabeth: Well, I had spoken with my Primary Care doctor and I told her what I was facing as I had no idea how I'm going to do this. I mean I was having trouble just making the flight up to Philadelphia, that's just a little over two hours. So, she prescribed me Xanax and just said, "You know you can take a half and if that's enough to make you feel calm." she said, "If you take a whole one it's going to knock you out, and you can just kind of nap." And that's how I got through the flight, you know, just being able to kind of nap and do it that way, and that's the only way that I would have been able to do so much traveling. It was very difficult.


Dr. Kirkpatrick: Yes. When you got there you were confronted with another issue. Okay, the issue is money.


Elizabeth: Yes.


Dr. Kirkpatrick: They would expect you to pay in advance; all hospitals do if you don't have insurance. And, tell us how that went and I mean as there were some, how would you say, less than pleasant situations with regards to that. I want you to tell us what they are and how important it is to...what we can do to improve on that situation. And, does this raise any ethical questions in your mind, you know, paying to volunteer to do research. I mean you're putting yourself at a huge, huge risk.


Elizabeth: Yes.


Dr. Kirkpatrick: I mean, you knew that going into this. Half the patients get lung infections. That's pretty substantial.


Elizabeth: Yes.


Dr. Kirkpatrick: Many of them get bladder infections during those five days. Those are potentially life threatening complications.


Elizabeth: Yes.


Dr. Kirkpatrick: And now you're going to pay money...


Elizabeth: possibly not wake up or...yes.


Dr. Kirkpatrick: Yes.


Elizabeth: Well, I had gotten to the point where I felt like I really didn't have a life at all. You know, so much had been taken away; I couldn't even cook meals anymore. That was something at least that I still had, that I could at least still cook dinner for my husband when he came home from work, and being stuck in a bed or stuck on the couch for most of your day is not how I wanted to spend the rest of my life. So I just kind of figured I'd cross my fingers and since I was healthy otherwise, I just hoped that none of those things would happen.


But, as far as having to pay so much for that, we had a little, some little complications right before we left.


Dr. Kirkpatrick: Tell us what happened.


Elizabeth: Yeah, they had told us in all the paperwork coming from the University up there in Philadelphia that it would be about $15,000.00 dollars American, and 2 (two) days before we were set to leave we found out that it was $15,000.00 Euro. That made it quite a bit more with the exchange rates being how they are. So, there was that and a little bit of extra cost kind of added on at the end. So, for other people that may not be a big deal, but when you're telling someone you have to pay an extra 5 to10 thousand dollars than you were expecting, you know, that's kind of hard to take.


Dr. Kirkpatrick: And some people might even put their house up for mortgage.


Elizabeth: Yes. My father had to do that. And then also because of the jump in price right there at the end, he didn't have available the right amount any more because of what we had been told before and then that changed so quickly at the end there. So, because he has really good credit he was able to get an American Express card, putting my name added to his account overnighter to our place over in Tampa, and we ended up being able to use that.


Dr. Kirkpatrick: Right.


Elizabeth: So, and that was a huge deal. They don't normally do that. So, if that hadn't have happened, I wouldn't have been able to go over there. So it was very stressful before we headed over there.


Dr. Kirkpatrick: I'm glad you brought that up because I'm sure the doctor's in Germany would want to know this and that they would want to perhaps work a little harder on making all these things, even before you leave the United States, clear, what your obligations are, because there's nothing worse to get these surprises when you're about to enter into a very invasive Intensive Care Unit setting.


Elizabeth: Yeah, yeah.


Dr. Kirkpatrick: Okay, so, where did you stay? Did you stay...of course in the Intensive Care Unit..., but, I mean, where did your husband stay, what were the living accommodations like?


Elizabeth: In the paperwork it was mandatory for whoever was going over there with you to have a hotel that they could be reached at the entire time. You couldn't ever stay overnight at the hospital. So, we stayed over there, it was the Hotel Mercure. T he doctors there provided us with a list of places that they knew to be reputable. Thankfully because of my husband's job, we were able to get a little bit of a discount on the hotel, but, you know, it was very expensive still. I think our out-of-pocket expense, you know, just food, hotel, well actually no, hotel not included. All of our other expenses totaled $7,500.00 by the time we had left there and we weren't sightseeing and getting gifts or anything like that.


Dr. Kirkpatrick: Well, that's important to know. Okay, so the big day arrives. You're going to be put under general anesthesia. You're going to get this endotracheal tube inserted in your windpipe.


Elizabeth: Yes, which thankfully I didn't have to see.


Dr. Kirkpatrick: Yeah. Well tell us about that and was that of any consequence to you or did you just sort of phase off into La La Land, so to speak.


Elizabeth: No. I really didn't have any time to be nervous. We went there we met with some of the doctors. They asked if we had any concerns at that point and I just wanted to go ahead and get it done.


Dr. Kirkpatrick: Alright, now. So, you're put under general anesthesia, you're basically in a coma now for five days.


Elizabeth: Yes.


Dr. Kirkpatrick: You've got what we call an arterial line in your wrist to measure your blood pressure, you've got a Foley catheter in place and you can't take care of yourself. You've got to get feeding through your I.V. and so you're really, you are totally at the mercy, so to speak, of the healthcare providers there. I mean, your life is hanging in the balance.


Elizabeth: Yeah.


Dr. Kirkpatrick: Now, in that five day period was there anything you became aware of during that time, was there anything during that time interval that happened that you think is important other people need to know about. I'm not talking about good things necessarily, I'm talking about were there some things that happened that were unpleasant for you? We need to know about those things.


Elizabeth: Yes. There were a few occasions that I can remember vividly where it seemed like some of the staff; they were using the room to kind of talk about other patients. Maybe that was the only spare room they had, but, you know, the kind of dreams that I was having were very vivid and having people in the room, they were laughing very loudly and only speaking in German, it was kind of disconcerting. And I just remember feeling very uneasy and feeling like I had to try to focus my eyes so I could look around the room and, you know, get a sense of okay, I'm still in ICU and everything's okay. And, yeah, on those few occasions it took me quite a few minutes to be able to open my eyes, but I could open my eyes and maybe had about 30 seconds to focus around the room, and you know, to see, okay, I'm still hooked up, everything's okay, I guess I can try to go back to sleep.


I know I'd heard some other people that went through the treatment, they said it felt like five minutes, you know, and then they were just awake again and that was not my experience.


Dr. Kirkpatrick: Not your experience, right. Well, you know I'm going to tell you something. I have seen some of the other patients come back and some have experienced what you just described, which has been very disturbing to them; waking up with a endotracheal tube in your mouth, unable to speak, unable to communicate.


Elizabeth: Yeah.


Dr. Kirkpatrick: So, what you're telling me is doctors and the nurses have to be perhaps a little bit more diligent in watching for any signs of that you may be conscious or aware of what's going on; I think that's very important.


Elizabeth: Yeah.


Dr. Kirkpatrick: Let's say if it did happen, it even happens in the practice of anesthesia, awareness, it's a big concern, big concern. What if you did wake up, what is it that would have been better, maybe they shouldn't be having these kinds of discussions about other patients in the room.


Elizabeth: That would be nice.


Dr. Kirkpatrick: Tell me what else they can do to make it more, less threatening, less disturbing to you, if that should happen, which we want to avoid.


Elizabeth: Yes.


Dr. Kirkpatrick: But there's no absolute guarantee.


Elizabeth: Of course. The one thing that I was surprised going into it is that they didn't have some type of soothing music going on in there, because you are in the middle of the ICU. One of the times they did look up I saw them wheeling by a patient that had a sort of huge gaping hole in his throat, and, not really what you want to be seeing when you're trying to stay calm and going through a procedure on your own.


Dr. Kirkpatrick: Right, right.


Elizabeth: So that was a bit tough, but, yeah, just music. Music and possibly having something else in the room that you could focus on that wasn't just cold, white walls and scary metal tools that you don't want to see what they're doing with.


Dr. Kirkpatrick: Right. That's very important and I'm glad you brought that up. That's very important. Was there anything else that you would want to share with us about that five day period when you were supposed to be under?


Elizabeth: Under. Well I know there was one point that they had brought up to me, but that I remember as well, that I guess they ask the patients that are in the coma if you can respond. And I tried to respond, but of course having the tube down my throat I couldn't speak, so, then they were asking me if I could sit up. So, I was, I was trying to sit up and of course that was digging all of the I.V.'s and everything into my wrists and causing them to bleed. And so they were like, "No, no no, we were kidding, lay back down." But, you know, I could understand them and what they were asking me to do.


Dr. Kirkpatrick: That was during the five days you were supposed to be unaware of things, but in fact, you were?


Elizabeth: Yes.


Dr. Kirkpatrick: Okay. And then was there anything else about that period where you supposed to be not aware of what was going on? What was only supposed to last five minutes instead lasted five days. Anything else?


Elizabeth: Um, I would say just other than all the conversations that they had in there, if there could have some music to block a little bit of that out and soften it, I think it would have been easier to just kind of relax and go back to sleep. Perhaps the lighting. I know I was aware of times that they put back on the fluorescent lighting and that just really, really did a number on my eyes. I think the Ketamine it makes you sensitive to that?


Dr. Kirkpatrick: Sure. Right.


Elizabeth: I know that those are little things, but they make all the difference in the world.


Dr. Kirkpatrick: Absolutely.


Elizabeth: At that point you feel very fragile and totally out of control.


Dr. Kirkpatrick: Absolutely, that's a good way to put it. You're very fragile, you're very vulnerable, and you’re really hanging by a thin thread there. You have no sense of control of the situation.


Elizabeth: No, no.


Dr. Kirkpatrick: Okay, so now you're emerging. Do you remember how you emerged from this and was it a fast process? Did you become aware quickly?


Elizabeth: I remember I had a conversation with two nurses, and they were telling me that the coma part was done, and you know, to just try to rest and it would take a while before I'd be able to try to get up and walk or do anything on my own. I remember that and I think I took a nap for a few hours, and then that night I felt like I could have completely lucid conversations with the nurses and everything like that.


But it was difficult because when the medications wore off then I couldn't talk because my throat, I guess, was still so swollen from the tubing down there. So, that I didn't expect. And, then I didn't have use of my right hand just from the heart monitor being on only the first two fingers there. They were so swollen, bleeding underneath the nails because it was so tight, and there were no call buttons. So, there were some points that were kind of scary.


Dr. Kirkpatrick: How long did it take you to more less come through so you were aware being able to converse after the endotracheal tube was removed would you say, do you remember?


Elizabeth: I think it was only a day.


Dr. Kirkpatrick: Only a day?


Elizabeth: Yeah. Because I recall too, the night nurse, you know, being surprised and come sitting at the end of my bed and talking to me and saying, "Do you remember the conversation this morning?"


Dr. Kirkpatrick: Right. Now, one of the things that can happen when you emerge from Ketamine is you can have hallucinations. Sometimes they're pleasant and sometimes they're very unpleasant. Do you recall having any hallucinations, or did your husband recall this? Did he recall any of that sort of thing?


Elizabeth: Well, I thought that the room was much prettier than it was, actually. After I was awake, I thought that the air vent, that looked more like a sun dial to me, above, and you know, as the days went by I realized that none of those things were there, that I had thought to be.


Dr. Kirkpatrick: Now, do I understand that in your case, you're one of those that had a kind of pleasant experience, the illusions and so forth, that you had, were more pleasant than unpleasant?


Elizabeth: More pleasant than unpleasant, but I felt like I had to work very hard to keep that balance. Like I said, when people would come in the room and they were talking and laughing and flip the fluorescent lights on, you know, in my mind I was seeing one of my little kittens I have at home, then the kitten started breathing fire and it got very, kind of scary.


Dr. Kirkpatrick: Right, okay. So you're emerging from Ketamine anesthesia. Who noticed that there was a change or was it the people around you noticed there was a change? When did you say, hey, something's happened here? Tell us about that.


Elizabeth: Well, before I was even out of the coma actually, I know my husband noticed the difference in my eyes. You know, I hadn't realized how much the pain and then having RSD on the left side of my face was causing me to kind of scrunch up my face and, you know, that was just kind of the way it went. But, just the clarity in my eyes, he said as well, but just that I looked like a completely different person. He said I looked like I did when he first met me, and it had been four years.


Dr. Kirkpatrick: Has that been a consistent response to people that have known you before you went to Germany and now after that you have changed, and how do they describe that change in just in your interpersonal interactions with them?


Elizabeth: Everybody, I think has the same, you know, the same feeling that they can just tell I've been given a second lease on life and you know,  I  just look like I'm not in pain anymore, they can tell that I'm not dealing with the pain that I was dealing with before. And for a lot of people in my family, that was the first time that they really had any understanding of how much pain I really was in before, just in contrasting now how I'm able to carry myself and, you know, how I can speak and all that.


Dr. Kirkpatrick: Okay. So, now let’s change gears here a little bit. Let’s look into the less favorable things that happened. For example, one of the things that I want you to tell us about is, you know, I mean you've been flat on your back for five days and now all of a sudden you're trying to get up and start moving again. Tell us about that and any problems you may have had laying flat on your back for five days.


Elizabeth: Well, I did end up with bedsores, so that was not too fun. And just from...


Dr. Kirkpatrick: By the way, were those treated effectively?


Elizabeth: No, I don't think they ever did anything for them.


Dr. Kirkpatrick: They just got better?


Elizabeth: Yeah, well my husband went out and got some creams and things in town and brought them. There was so much going on I think at the time we noticed them that they didn't really have a chance to address something like that. Um, they were dealing with, I think, a car accident that had just come through and all of that, so there actually were a lot of little things like that.


Dr. Kirkpatrick: Well, lets talk about those little things, okay, some more. Go ahead.


Elizabeth: I know one of the things too, after I was out of the coma, I couldn't swallow anything. And you know, they wanted me to try to start to swallow something. So, they'd start with hot tea, set me up on the bed perfectly straight, and in order to be able to swallow a tiny sip I would have to lean forward even more to be able to get a tiny little sip down. And that meant then coughing and choking for a good ten minutes after, and, you know, that would go on for hours, but we had to try to do that. I think it took two days before I wasn't choking for that long, you know, and then after two days it was only a minute or so that I'd be choking, and then I was finally able to get a little bit of yogurt down, which at the time was like ambrosia to me. But, it was really much more difficult than I had expected. I didn't expect to be so weak.


Dr. Kirkpatrick: Weak. Tell us about that. Give us a sense of your strength before and after being flat on your back for five days. Tell us about that.


Elizabeth: Um, well before, I mean, I could move around with great difficulty, but then after the coma, I mean, I couldn't get up at all. I couldn't, you know, referencing the Kill Bill movies that Quentin Terentino did,  I brought me right to the scene where Uma Thurman's laying in the back of the car, and she had been in a coma for quite a while, and you know, she was having to wield herself to wiggle her big toe. That was how it was, you know, sitting there trying to see what usage I had with any of my limbs.


Dr. Kirkpatrick: How long did it take before you could actually walk?


Elizabeth: Um, well they wouldn't let you try to walk for quite some time, but I know the other patient that had gone through this treatment, she was having some other problems, so I did kind of, you know, hop on a little chair they had left in the room and get across. So, I was able to do some maneuvering I would say two days after. But as far as walking a long distance it took probably another week before they would let me walk all the way down the hall and to actually use the restroom instead of the horrible cold metal pans that they still use in Germany


Dr. Kirkpatrick: Okay. So, how long were you after the five days in the coma state, how many days after that were you still in the Intensive Care Unit, or were you discharged almost immediately from there?


Elizabeth: No, not discharged almost immediately. Um, we were there, let me see, we were almost in Germany a month. And I think just the last maybe week and a half, we were able to go, I was able to go back to the hotel room, but the rest of the time, I was in ICU up until the last four days or so, when they moved me down to another floor when I was just waiting on a specialist because there was some concern about my hearing not being up to par.


Dr. Kirkpatrick: Okay


Elizabeth: So, I was in ICU for a while.


Dr. Kirkpatrick:  Now, you were aware that, you know, some of the patients who go to Germany, when they come back to the States, they're fine. I mean some of them just, they're permanently, if you can imagine, 5 years, 7, 8, 9 years down the road, they just don't have RSD, but, some end up with a situation where they have to have these tune-ups with low dose Ketamine.


Elizabeth: Uh Huh.


Dr. Kirkpatrick: Okay, you were aware of that, right, going into this.


Elizabeth: Yes.


Dr. Kirkpatrick: And since you've been back, you've had one of these.


Elizabeth: Yes.


Dr. Kirkpatrick: Okay. And, first of all, I want to know was there anything else when you woke up from the coma that was a problem? Did you have problems, for example, some people when they lay on their back, they get back pain. Did you have back pain?


Elizabeth: Yes. I had a lot of back pain. Yeah, the only comfortable position I could find is on the one side, and that I unfortunately could not do because of all the tubes and what not, so, you're pretty much stuck on your back, which was difficult. But, um, you know, I know the one thing was, is the worst, is where there were no nurses on staff that spoke English, and there would be things like the oxygen tube falling out, you know, choking for a while and not being able to call someone because I didn't have that ability yet, you know, my voice was still barely above a whisper, so, you know there are things like that that made it a little scary to go through, but certainly worthwhile. I'd do it again!


Dr. Kirkpatrick: Okay, so you came back to the United States and my understanding is you still had some of that back pain, correct?


Elizabeth: Yes.


Dr. Kirkpatrick: Okay. Part of it might be just the flight from just being on the plane, the flight back.


Elizabeth: Yeah.


Dr. Kirkpatrick: So, you have your low dose Ketamine infusion. Why don't you tell us about that, how that compares with the high dose. Are you totally out of it; are you a little more with it during the infusion?


Elizabeth: Much more with it.


Dr. Kirkpatrick: Much more with it. Tell us about that. Could you communicate, yes?


Elizabeth: Yes. I could communicate with some difficulty, though. You know, I think there's a, you kind of have a delay. So, people are asking you questions and I don't want to come off as an idiot or, you know, what have you, so I could communicate, but it wasn't the easiest thing in the world to do.


Dr. Kirkpatrick: Right.


Elizabeth: The first day of the treatment, I was asleep for most of the time, but I did wake up periodically, um, and I know it helped considerably there. You know, they encouraged you to bring a CD Walkman with you so you could listen to your own music and, you know, just kind of be relaxed there. So that was very helpful, but after the treatment, though, I know I was very, very nauseas and had a terrible, terrible headache, which I think might have had to do with they started my treatment later than the other people in the room, flicked on the fluorescent lighting about an hour before I was done, and that was it. I felt like a vampire trying to hide away from the light. The second day was much easier, but I remember after about two hours, and the treatment takes four, I was awake and that was it.


Dr. Kirkpatrick: Yeah, okay. So you had two sessions, they were four hours a piece on consecutive days and did you, after that second treatment, did you notice any improvement? Remember you came back with some problems, the back pain. Tell us about that.


Elizabeth: The back pain was better, but I don't know if it had to do with the treatment per se or just that more time had elapsed and I wasn't lying down and I was getting some of my strength back. You know, I'm still very weak from the treatments, but, you know, it's hard to tell how much of that is from all the traveling too. I know it's difficult having to fly up there form Florida to Philadelphia to get the treatments done. That's still a three hour flight back and forth in a short period of time.


Dr. Kirkpatrick: Yeah, one of the reasons why we wanted you to go back up there was because we wanted Dr. Schwartzman to really get it firsthand, how you're doing, how you're coming along and in the future, if you need him.. We could do those infudions down here, but, I think it was important for him to see you firsthand with the improvements that you made. 


Can you think of anything else, have we covered everything you think a patient should know before making a decision and doctors should know about informing their patients? Can you think of anything else that, something else that we haven't discussed that would be important, not just for patients to know, but for doctors to know?


Elizabeth: Some of the things that weren't brought up at all as an issue because maybe they're not a problem for the doctors on their end to be monitoring, but I didn't realize it would take so long to be able to breathe better. And I know I had a lot of difficulty breathing, to where, I mean, there was one point, you know, after I was out of the coma, I thought I was dying, I mean, I was choking so much and I just had been laying there choking for hours and hours on end and, you know, could not catch my breath. And that was something I had never gone through myself, so that would have been nice to know.


Dr. Kirkpatrick: Right.


Elizabeth: If that was just a regular thing that you know you have to deal with going through there. And I had already been familiar with the effects of Ketamine a little bit from the nerve blocks. So, I wasn't as worried about that, but I think there are a lot of things that you need to bring with you if you're going to be doing it in Germany to make yourself more comfortable.


Dr. Kirkpatrick: Tell us about those things.


Elizabeth: Definitely, bring your own music.


Dr. Kirkpatrick: Okay.


Elizabeth: You know, I was fortunate enough to be in a room where the nurses had some beat up old boom box next to me and I could have music to kind of drown out all the other things that was going on in the ICU. And just bringing, like, toner to clean off your face and help cool you off , since the whole time I was in there I'd go from being freezing to sweating profusely and back and forth, and back and forth, and a lot of nausea mixed in within there. There's just a lot of little comfort things that you can bring with you, you know, and even another blanket, seemed to be some things they were short of. Chills can be your worst enemy when you're just trying to hold it together.


Dr. Kirkpatrick: Right.


Elizabeth: Just things like that. I think reading is out of the question. So, anything else like that you could think to bring that just makes you feel more at home. I know I brought some lavender spray just to kind of take away the hospital smell out of there and you know it was just; it helped me relax enough to make a difference.


Dr. Kirkpatrick: Right. And by the way, on the visual thing, we know Ketamine will alter your vision and double vision is very common, even at low doses and blurred vision, so, yeah, I'm glad you brought that up about the vision problems. So I think we've covered pretty much all the good, bad and the ugly, I think. You think so?


Elizabeth: I think so. I think so. I would recommend certainly having sunglasses with you when you leave. I know that was something I did not bring with me, and I don't know what the cab driver must have thought, but, I mean, it was way too bright for me to look. He probably thought I was really hung over something and I just had to, kind of like, lean down in the cab like that. That's something that extreme light sensitivity causes. And definitely find a hotel that you're in a non-smoking section.


Dr. Kirkpatrick: Yes.


Elizabeth: Yeah, as it did heighten a lot of my senses that way. And normally cigarette smoke doesn't bother me, but it about made me get sick walking through the hotel there.


Dr. Kirkpatrick: Right. That's important. I'm glad you brought that up. Can you think of anything else?


Elizabeth: Not off hand.


Dr. Kirkpatrick: Okay, well, I think you did a great job.



The International Research Foundation for RSD / CRPS is a
501(c)(3) (not-for-profit) organization in the United States of America.

Copyright © 2005 International Research Foundation for RSD / CRPS.
All rights reserved.
For permission to reprint any information on the website, please contact the Foundation.