Trauma Survivors Network - provided by ATS

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New & in the dark

New & in the dark
by ClaireA on Jul 05, 2016, 07:59AM

Two weeks ago, my 70-yr-old dad sustained an incomplete c6 injury. A couple days ago, he was moved from ICU to an acute rehab facility. We know he’s in good hands but we feel left in the dark otherwise. While he was in the hospital, very few doctors spoke to us about the situation. We had to ask the nurses to get a Dr for us to talk to. We tried to attend a TSN meeting, but no one showed up (later found out the facilitator was on vacation). My dad hasn’t received any offer for emotional support/psychological therapy and he’s plunging into depression.

We were told by one DR that these types of injuries are largely a “wait & see” type of situation dependent on healing. We’ve heard terms “incomplete c6 injury,” “hyper extension of spinal cord between c5 and c6,” “central cord syndrome.” But no one has put it all together and given us the big picture of what that means in real life – and we asked. I understand that no one can predict the outcome for my dad, but no one has even offered a generalized concept. We’re clueless. We’ve all been thrust into an entirely new world requiring an entirely new education. Other than receiving some very basic info in a binder, we’ve gotten nothing. Are we supposed to rely on Google?

Im so sorry to vent, but I’m at a loss on how to help. I’m shocked at the lack of readily available on-site support. I have no problem being a patient advocate, but part of that is knowing where to turn, and I don’t. Now, I’ve returned home, 2 states away, and my mom and dad are left dealing with this on their own. My mom is emotionally weary (as am I), and my dad’s growing depression, while completely understandable, is also concerning. Any advice is greatly appreciated.

Reply: New & in the dark
by bmunsky on Jul 11, 2016, 07:32PM

One of the hardest and scariest parts of a trauma is not knowing. I know from personal experience as a trauma survivor and a peer visitor that hospital doctors tell patients the worst case scenarios and/or give vague answers. I was in a coma for 2 months with smashed bones throughout my body and lacerated or torn organs. My wife was told that I may or may not come out of my coma, walk again, or survive my operations. It seems like they do this for several reasons. First, each patient is different. Even ones with the same injuries. Patients with the exact same injuries can have completely different outcomes. Most people in my situation would still be in a coma, became a amputee, and not be here to support other trauma survivors. Recovery is a long journey with ups and downs. You are doing all you can do at the moment. Supporting your dad and asking his care givers questions. Keep asking question. There’s no such thing as to many questions. You may even want to get a second opinion. Your hospital should have other resources about spinal cord injuries and support for patients family members Another thing I would try to do is live in the present. What I mean is don’t dwell on the past or constantly worry about the future. Thinking about the past and future is what humans do. Just try not to live in it. When I was going through my recovery that’s all I was doing. My body healed and life became more peaceful when I learned to live in the present. I wish the best for your dad