This post is the beginning of a series of posts dedicated to exploring the patient experience after brachial plexus injury.
Patient responses when asked about what they expected for outcomes after brachial plexus surgery:
- "I expect to get movement again in my arm. I do not expect 100%, that is unrealistic. But I expect 90%."
- "I know it can never be 100%. I was told there is no guarentee, but maybe 80%."
- "I expect to hold my baby like a normal person would."
(Mancuso CA, Lee SK, Dy CJ, Landers ZA, Model Z, Wolfe SW; HAND 2015. Link)
As a whole, brachial plexus surgeons tend to focus on outcomes related to recovery of specific muscle strength (see link here for a paper that I wrote about this; Dy CJ, et al - J Hand Surg 2015). We probably feel that this is most objective and reliable way for us to assess improvement after injury and after surgery. We target our surgeries to improve specific muscle function (elbow flexion, shoulder abduction, etc.). But in doing so, we likely lose perspective of what is most important to the patient - can I do what I need to do in order to function independently?
As an orthopedic surgery resident at Hospital for Special Surgery in NYC, I was fortunate to work with two experienced brachial plexus surgeons (Drs. Scott Wolfe and Steve Lee) who had enough insight to recognize and investigate the importance of the patient experience in brachial plexus injury. We teamed up with a brilliant qualitative researcher (Dr. Carol Mancuso) and developed a study to perform detailed, in-depth interviews to ask about what patients expected after their brachial plexus injuries. This is ultimately important because it helps us, as surgeons, understand what you, as patients, are expecting in terms of ultimate recovery after surgery. If we see eye-to-eye and are able to level these expectations before surgery, it is more likely that we will both be pleased with the result. However, if we are on completely different pages before surgery, it will be a difficult postoperative course, filled with frustration - I might be happy that you are flexing your elbow, but you might be frustrated that you cannot hold your baby or are not functioning at 90% of normal.
The detailed results of this carefully conducted study are published in the journal HAND (link HERE; email me if you would like a copy of the paper). What struck me the most is the amount of variability in what patients expected after brachial plexus surgery. Certainly this speaks to the tremendous variability in the severity of injury (ie: upper trunk vs complete plexus... and every iteration in between), but it also tells me that a lot of what patients expect is shaped by what they have been told by other medical personnel and what they have found on the internet for themselves. And I truly believe that this is a critically important part of how we can make a difference for patients - educating other medical providers about what can (and cannot) be done for brachial plexus patients and publishing reasonable and reliable information on the internet regarding brachial plexus injury and brachial plexus surgery. These are life-altering and immediately-devastating injuries, and our patients deserve the best possible (and realistic) information about their injuries.
This project was incredibly beneficial for me as a brachial plexus surgeon. In my office, I take every effort to understand the magnitude of how this injury has affected the life of each patient (and the lives of their family and friends, who typically "step up" tremendously to help out). And I make sure to ask every patient what they expect before surgery... and then I take some time to make sure that we are on the exact same page in terms of realistic expectations for outcomes, both in terms of function and in terms of time.
So now I ask the multitude of patients on the internet with brachial plexus injuries - what did you expect from your surgery? (if you had one). And for the BPI surgeons on the web - what type of expectations do your patients have for surgery?
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