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A Complex Ehlers Danlos Case
1 Plays4 minutes ago
Hand Therapy Academy welcomes Megan to discuss a complex patient case. Tune in for her insights, strategies, and clinical pearls that can help therapists navigate challenging cases.
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Transcript
Introduction to Megan and Ehlers-Danlos Specialization
00:00:05
Miranda Materi
Hello, I'm Miranda.
00:00:07
Megan
And I'm Megan, and we're Hand Therapy Academy.
00:00:10
Miranda Materi
Thanks for joining us again, Megan. As we had Megan on before, she has been a therapist for four years. And last year she became a certified hand therapist. And she is our go-to person for some of our complex Ehlers-Danlos cases. So she's going to be sharing a complex case.
Case Study: Teenage Patient with Ehlers-Danlos Syndrome
00:00:27
Miranda Materi
um And I do think it's interesting because each therapist at there at our office kind of has their niche and that's what they're in. And I think it's kind of cool that everybody can kind of develop their skills in that area. So she's going talking to us about EDS. And this is an interesting case she was sharing.
00:00:42
Megan
Yeah, thanks for having me. um I guess I'll just dive into the case a little bit about how she presented.
00:00:47
Miranda Materi
Yeah. Yeah.
00:00:49
Megan
So I had a patient, younger patient, teenager. um She came to our clinic with hand pain, elbow pain, shoulder pain, tremors, weakness, significant weakness. She was in a wheelchair, um not able to turn her neck.
00:01:05
Megan
So we couldn't do a lot of like nerve glides and things like that because we weren't allowed to do anything messing with the neck because she had a lot going on with, um,
00:01:17
Megan
They weren't sure exactly at that point what it was, but she was scheduled to have trans cervical neck dissection for her jugular vein. So they knew that was coming up, but they wanted to go ahead and get hand therapy started.
00:01:31
Megan
So i you know, came in with all of this stuff, but I went ahead and took the history, which can sometimes take a little while with the more complex patients. And then we kind of went through and just did what we could do for her in that moment.
00:01:46
Megan
yeah. I got her grip strength. I got her pinch strength and checked her MCP stability. and did her intrinsic strength and looked for IP instability. um And that was actually all we did assessment wise that day was getting a baseline. And then we measured her for ring splints and started working on the ring splint process with her.
00:02:10
Miranda Materi
Awesome.
00:02:11
Megan
Yeah. So do want to go on to the next part?
00:02:14
Miranda Materi
Yeah, I'll go on to the next part.
00:02:15
Megan
Okay. Okay.
Post-Surgery Recovery and Improvements
00:02:17
Megan
then we took a break from therapy for about a week and a half because she was having this neck surgery and she was adamant on coming in that next week. I was like, we can take more time off. She said, no, I'll be here. And we're like, all right, sure.
00:02:31
Megan
So she went in and she had her surgery and she came back, walked into our office and said, I want to read.
00:02:36
Miranda Materi
Mind you, she was in a wheelchair before.
00:02:38
Megan
No, I'll do it. built her before for ah multiple years. She walked into our office and said, I want to retest my grip strength because the week before she had zero pounds. It was about seven, but like technically it wasn't enough to like register a level on the dynamometer and 17 pounds of grip strength.
00:02:57
Megan
And she came back, we tested it and she had 60 pounds of grip strength in her right hand.
00:03:03
Miranda Materi
Oh my gosh, what a huge change.
00:03:04
Megan
Yeah, it was a huge change. and I think it was about 40 in her left hand. So also a huge change.
00:03:11
Miranda Materi
And that was just from like releasing the fascia around her jugular.
00:03:15
Megan
Yeah, so they went in and I don't fully know the surgery, but from my understanding of like talking with the patient and reading what the surgeon did, they went in and her jugular vein was just being constricted by fashion. So they released it, cleaned it all up, opened it all up. And she actually stood up that day post-op.
00:03:36
Miranda Materi
Wow.
00:03:36
Megan
They didn't want her walking around yet. And she was like, I'm getting up.
00:03:40
Miranda Materi
I think that's like really interesting and because like when we think about like muscles not working or weakness, you know, we think, it could especially with the Ehlers-Danlos population, we think it's because of an instability, right?
00:03:43
Megan
Yep.
00:03:51
Miranda Materi
Or we think maybe there's like a nerve issue, but sometimes I don't always think about being a blood flow issue.
00:03:54
Megan
yep
00:03:58
Megan
No, I, I don't either. Like that's not, we knew she had this stuff going on until like maybe blood flow was involved, but I think even her and the surgeon were thinking there was something else. They were going to have to reconstruct the jugular vein and kind of clear up room for the nerves and for everything that was happening. But and ended up being a lot simpler and quicker of a surgery. I mean, relatively than they were
Importance of Blood Flow in Recovery
00:04:22
Megan
planning on. And yeah,
00:04:23
Megan
I think it it made me like realize, especially with those complex patients, you do have to kind of think that there are other things that could be causing what you're seeing than what you typically would see.
00:04:33
Miranda Materi
Right.
00:04:34
Megan
Mm-hmm.
00:04:34
Miranda Materi
Yeah. You have to look beyond. And then, so like, what, like now that you know that, I mean, what, like, are you doing more like testing blood flow? Right. Like, I think that would be an interesting one to look at, like some of those tests where you look at blood flow, like an Allen's test and things like that.
00:04:51
Megan
Yeah.
00:04:51
Miranda Materi
And also even to look at it on ultrasound to see, you know, if you could see the flow, like a musculoskeletal change, the flow.
00:04:51
Megan
Yeah.
00:04:56
Megan
True. Yeah. Yeah. If you have ultrasound equipment to be able to see like, is there good blood flow or not? think like we don't think about that making a big impact on like muscle use, but obviously like you need good blood.
00:05:11
Miranda Materi
Yeah, it does.
00:05:12
Megan
Like it makes sense.
00:05:12
Miranda Materi
I think it's we don't see those issues a lot, right?
00:05:13
Megan
Yeah.
00:05:15
Megan
And that's not a typical thing that presents but I do think, even if it's not something you do, like I might not do that every eval that I have at DDS, like I have a lot of them but when there's things that aren't making sense and arent adding up it might be something to like add into the pool of assessments.
00:05:32
Miranda Materi
Right. And I wonder, like, how did she end up getting, like, where they knew that was the
Diagnostic Journey and Innovative Surgery
00:05:36
Miranda Materi
issue? Like, what diagnostics do you know?
00:05:38
Megan
I don't, I don't. She had had like a really complex history and a lot of different things going on. She was working on getting all her diagnoses. And i think somewhere along the line, she just found the right surgeon. There's not a lot of surgeons that do that surgery. I think he's kind of pioneering it.
00:05:56
Miranda Materi
What's the surgery called again?
00:05:56
Megan
So,
00:05:59
Miranda Materi
What's the surgery called again?
00:06:01
Megan
well, the surgery they had her scheduled for was a trans cervical neck dissection and a jugular vein reconstruction.
00:06:08
Miranda Materi
oh
00:06:09
Megan
I don't remember the name of what they ended up doing. Like that's what they went in to do, but then they modified a little bit once they were in there.
00:06:16
Miranda Materi
Okay, that makes sense.
00:06:17
Megan
Yeah.
00:06:18
Miranda Materi
Okay. So then that brings me to my next question. So when you're getting these very complex cases and you only have an hour of time, sometimes less, right? Like sometimes they show up late, haven't done the paperwork.
00:06:26
Megan
Yeah.
00:06:28
Miranda Materi
Like, how are you honing in on what you need to focus on and then still making sure that you're safe, right? With the patient. Cause like that patient, you know, I think you said she has some cervical instability too.
00:06:40
Miranda Materi
You're like, you really do need to get a good history. So you don't cause more trauma or, you know, injure that the patient.
00:06:46
Megan
yeah With that, I try not to rush the history. I think it tends to be the history is the thing that we want to rush with patients because we're like, oh, you're giving me all this information that doesn't matter.
00:06:56
Megan
But I try to start doing assessments while I'm getting their history and encouraging them to like pause and focus on the thing and then keep going while we're doing testing that based on reading their history from their paperwork, I'm pretty sure are going to be safe.
00:07:10
Megan
I will say most of the time these patients are good about saying, I don't know
Balancing History and Assessment in Complex Cases
00:07:13
Megan
if I can do that. And I'll say, okay, why? And they tell me, you know, I have cervical instability.
00:07:16
Miranda Materi
Uh-huh. Mm-hmm.
00:07:17
Megan
And then I say, actually, this is fine. Or, okay, we're going to pivot. And not do it. I try to get them to tell me though what they're here to see me for. So that's what I start with. Like I know we have a big history. I want to hear about it. Make sure we're not doing anything that will aggravate things that we don't want to be aggravating.
00:07:35
Megan
But what are your top two concerns with me? So then I know for her it was her weakness and her finger pain from hyperextending. Like okay well we don't even have to do anything proximal today.
00:07:47
Miranda Materi
yeah that's a good point and we can make progress
00:07:47
Megan
Because we can focus on your hands. And then make some progress, and then eventually add those things in. And I do that with all of my more complex or hypermobile EDS patients.
00:07:58
Megan
I have them pick their top two concerns. And I'll measure more than that if I can. But if it's a lot, like if they're coming in and they're like, my fingers hurt, my wrists hurt, my elbows hurt, my shoulders hurt, I say, let's pick two, get those stabilized, and then go from there.
Effective Management Tips for Complex Cases
00:08:11
Miranda Materi
Yeah, I think that's a good, that's great. I used to have them make a list of things that bothered them from, you know, the, what bothers them the most to the least. But I think picking two things is probably even better because sometimes the list gets so long.
00:08:21
Megan
i That's what I found. I used to just say like, what are, you know, what's your top, but now I specified two. And if someone says something that I'm like, okay, we'll add that as a third, or we'll do that alongside, but it gives them a chance to really focus. And I just had a patient that, you know, wasn't the typical hand EDS eval I was expecting.
00:08:40
Megan
And I asked her, what are your top two? She was like, actually it's my elbow pain and my right wrist pain right here. And I was like, well, that's pretty specific. We can start with that and then go from there on everything else.
00:08:49
Miranda Materi
yeah Yeah. Well, that's, I think those are very helpful tips. Thank you, Megan, for sharing the complex case and a couple of tips.
00:08:59
Megan
Of course. Thanks for having me again.
00:09:01
Miranda Materi
So if you want to reach out and share your case or learn more, please email us info at hand therapy academy, or you can reach out to us on Instagram at hand therapy academy.