Summary
The purpose of this booklet was to synthesize and disseminate the main symptom concerns for individuals who use the Osseointegration Peer Support Group on the Facebook platform. This information was compiled from individuals who posted on that site about their experience of osseointegration surgery and the symptoms and challenges they have experienced in the period after surgery. It is important to once again note that the experiences listed in this booklet may not be representative of all people who have undergone OI, and that the information presented in this booklet is not medical advice and should not be used as such. Further, while we have reported how individuals have treated symptoms, this does not indicate that it is best practice, and any questions regarding treatment or outcomes experienced should be directed to a healthcare provider.
It is also worth noting that although this booklet highlights many of the more challenging symptoms experienced by individuals who have undergone OI, not all persons post-OI report challenges. Many individuals posting on this Facebook site report very positive outcomes, such as greater mobility when walking, easier transition when attaching the prosthetic, and more overall freedom compared to using a socket prosthetic. Many individuals posted that they wished they could have had the surgery earlier to have experienced the benefits sooner, and others say they have no regrets at all – even with some of the symptoms that come along with it. Many of those posting stated that although there may be negative symptoms throughout the recovery, the surgery is worth having and the positives outweigh the negatives; they describe the surgery and recovery as “part of a journey”.
The postings suggesting that the positive and negative outcomes experienced are seen as part of a typical “journey” for someone who has had OI are corroborated by two qualitative studies that were conducted by interviewing individuals who had undergone OI.
In the first study (Lundberg et al, 2011), 13 individuals (seven males, six females) who had undergone the OI surgery at least three years previously were interviewed regarding their experiences with OI. Interviewees were asked the question: “How do you experience living with your osseointegrated prosthesis compared to your earlier prostheses suspended with sockets?”. The participants reported that OI had had a “profound existential impact on their lives” and they described this “in terms of a gradual change in their identity from considering oneself as being disabled to having an identity as a healthy person.” All described the change as being revolutionary in their lives including things like being more active, wearing the prosthesis more, the prosthesis being experienced more as part of them, and improved quality of life.
A second study, conducted by Hanson and colleagues (2019), included seven individuals (five men and two women) with transfemoral amputations who were, at the time of interview, 10-53 months post-OI surgery. The intent of this study was to examine the process of becoming a user of a transfemoral osseointegrated prosthesis. Participants reported a period of adjustment to living and walking with an osseointegrated prosthesis. They also reported positive outcomes including immediate sensory feedback from their prosthesis when walking, increased liveliness and movability compared to having a socket, a more positive outlook on life, and having an increased “action space” (less mobility restriction). As two persons who posted on the Osseointegration Peer Support Group site said of OI “gave me back physical comfort and total ease in mobility” and “my mobility and energy level are so much better”.