Worries can be powerful
Riley: We recorded a message that said, “Hello, dear Riley, the blood draw did not hurt as much as I thought it was going to.” Just because I wanted to remember that, so we did that.
Mom: She said, “I can’t believe I wasted my whole weekend worrying about that!” Worries can be powerful.
Riley: Yeah.
Interviewer: Do you think that recording will be helpful?
Riley: Probably. If I believe myself.
Mom: I know, I was actually thinking—I was wondering about that already. We’ll keep it, we’ll see!
Riley, child, and mother, CLOVES syndrome
I’m just used to it by now
When I was younger people used to say I handled it so fabulously. I wouldn’t get really nervous before surgery; it was kind of just like “ok” you know? You’re so young that you almost don’t realize. That’s the advantage of having a lot of this stuff done when you’re young and you’re not aware of what can happen and the risks. As I started to get older, specifically my 5th grade surgery, I started to worry about being put under anesthesia because that was when I was becoming more conscious of the situation. I definitely had a lot more anxiety as I grew older about it, but one of the things I did was I talked with someone here prior to the 5th grade surgery, leading up to it, and we practiced relaxation methods and stuff like that and they definitely helped a lot. It’s something I’ve grown out of as I’ve gotten older. Now when I go in for surgery, like I’ve had a few in this past year, and I mean I get a little bit nervous the morning of but it’s like I’m just used to it by now so I don’t really get nervous anymore. But, there was definitely that time period in my childhood where I did get very anxious before surgery.
Erica, young adult, Klippel-Trenaunay syndrome
Now I tend to get a little nervous
Now I tend to get a little nervous. To be honest, I was actually pretty unnerved before the last surgery because I found out a lot of things the day of surgery. I knew I was going to have a drain in, but it turned out to be multiple drains. I also found out that I was going to have to spend a couple days in ICU which I hadn’t been aware of, so there was a lot in pre-op that I found a little rattling. In those cases I just kind of resorted to, “Ok, this is very nerve-wracking now, and it’s not going to be a great recovery, but what can I expect from this down the line” and I decided that it was still worth pursuing. Certainly anytime you have to go in the hospital or have surgery, nobody really wants to do that.
Sarah, young adult, Klippel-Trenaunay syndrome
Get as much information as possible
I think in dealing with surgeries it helped to get as much information as possible. I hadn’t had one of these debulking surgeries in a while, so I would say in retrospect I probably should have spent the time leading up to it asking what exactly I could expect because again, things have changed. I would say in preparing for surgery it helps to weigh the pros and cons and have as much information as you possibly can, and any prep work you can do beforehand. I geared up a work-out program over the summer because I knew I was going to be immobile for a while. I was always going to have pain and swelling and wounds, but if I was able to build up my muscle mass and be in good shape going into it, then it wouldn’t be as detrimental to my overall health. I certainly think that if there’s anything that you can do to prepare, you should.
Sarah, young adult, Klippel-Trenaunay syndrome
How many times am I going to have to go through this?
The first two surgeries I really didn’t have too much time to think about it because they were really emergency surgeries. I was just told “you’re going into surgery” and then off I went. I was in the hospital for a couple of days before the first surgery because I had a biopsy and I think before that one I was kind of anxious to get it over with because I was thinking “oh, they’re going to go in there, fix everything and I’ll be fine and I’ll get back to leading my life.” So I don’t think I was so much scared at first as I just wanted to get it over with. The second surgery was sort of the same thing in that it was just like “oh, we see that your rods have failed.” and then I went into surgery so I didn’t have too much time to reflect on it; I mean it was scary. By the time I had the third surgery I think I was worried about how many surgeries I would have to have, because this was my third surgery in the span of 3 years and by that point I sort of wondered is this going to be a regular occurrence, do I have to come here for a surgery once a year or once every 2 years, or every 6 months? But I think after surgery the rods seemed to be fusing well to the spine, the cage fused well and I was told that I’m basically as stable now as I’ve been since before the 1st surgery. At this point I believe it. I’m told it should be the last surgery that I ever need. But there was definitely some anxiety as to how many times am I going to have to go through this?
Kevin, young adult, Gorham disease
Each surgery is stressful
Each surgery is stressful, and I worry about all of the possible complications that may arise. When I was younger it was just a part of my life. I pretty much had one or two surgeries each year until I started college. They would debulk as much as they could and then it would overgrow and I would have to have another surgery. My LM has a history of making its way into my jaw bone, which caused it to overgrow, so they had to reconstruct my jaw a few times with titanium plates and screws. The last few surgeries have resulted in some complications. Post op infections and scarring of the tissues. Being older now, and having a full time job (for which I am grateful for and enjoy) and bills to pay makes it more difficult when things don’t go as planned. When I was in school I wouldn’t worry as much about missing days and being out. Now, with much more responsibilities, missing work makes it a lot more stressful.
Emily, adult, Lymphatic malformation