Life Two and a Half Years After My Injury
Posted: Wed Dec 24, 2014 5:22 pm
I don't post here much, but I thought I'd share my story. About 2.5 years ago, I was the victim of a violent crime. I was walking down the street when a woman in a car stopped me to ask for directions. She grabbed my iPhone and tried to drive off with it. I woke up in the hospital with a concussion, head-to-toe road rash, and a brachial plexus injury that left my arm paralyzed.
I was lucky that I found this board early on, because it made me realize how important it was to get treatment right away. I am also extremely lucky that the accident happened near Stanford Hospital, and that I was taken to their ER. Stanford has a doctor named Catherine Curtin who specializes in this type of injury, and she made an enormous difference for me. Their physical therapy department is also very familiar with this type of injury, and I spent two and a half years under the care of Leta Jones there.
About six months after my injury, I underwent my first surgery. They pulled six inches of nerves from the back of each of my calves and used them to rewire my shoulder and arm. The tops of my feet are permanently numb and the back of my legs look like Freddy Kreuger slashed them, but we saw improvement. Slowly, I regained movement in my fingers and my wrist.
But still we were seeing no improvement in my bicep. At the one year mark, I underwent surgery for a second time. This time, they spliced the nerve that runs down to my pinky and wired it over to my bicep. (They wanted to do this in the first surgery, but the nerve was still too damaged.) About two months later, I saw a flicker of life in my bicep. I can now curl about 5 pounds, and I continue to work on it.
My shoulder is still, to this day, out of its socket. They measure how far out it is by "finger widths." After the injury, my arm was hanging three finger-widths out of the socket. I had to wear a shoulder brace over my shirt and keep my arm in a sling for over a year. Today, my arm is only half a finger-width out of place. I no longer need a brace or sling.
Like many people here, I found workarounds for the lack of an arm. I used a "suicide knob" to drive my car, and bought velcro shoes. I learned to crack open an egg with one hand. The most frustrating thing for me was the small things that I couldn't do when my arm was paralyzed, like not being able to put my shirt on over my head or cut my own fingernails. Filing papers frustrated the hell out of me.
The worst part about the injury was not the lack of an arm, but the fatigue. I haven't seen this discussed much here, but I suffered from what I assume was Chronic Fatigue Syndrome. I would start feeling tired after lunch. I'd sit down for a bit just to rest, and inevitably fall asleep. It would always be a very very deep sleep, much different from the quality of my sleep at night. When I woke, I would be in a deep brain fog. I did not want to talk to anyone or do anything -- not even watch TV. I was there, but I felt like my mind was elsewhere. This would often last for the rest of the night, and I was completely unable to get anything done. As an ambitious workaholic, this was very out of sync with my character.
Gradually, the fatigue became less frequent and less severe. While exercise would definitely set it off (always 24 hours later), it could also be triggered without exercise. The most frustrating part was not being able to figure out what caused it. Just as infuriating was the response by other people when you tried to explain the fatigue to them. "We're all getting older," they would say. I would want to yell back, "I'm not getting older! I was run over by a car!" But over the years, the fatigue has decreased. Now, I only experience it once every few weeks, and it is much less severe than it had been.
For the first year, I was eligible for state disability assistance. After that, you need to qualify for Social Security disability assistance. I applied and was denied, even though it would have started the day I got out of my second major surgery. I appealed and was denied again. The system is not built for people who have an injury with effects that last longer than a year and shorter than forever. So I found a lawyer who would take the case pro bono. We appealed again and I had to go before a judge and explain my story. Believe me, that's a humbling experience. But a couple months later, I found out that I had been awarded 18 months' worth of disability. Months later, I am still waiting on the check. While the payment will be a huge help, I am fortunate that I do not need it to pay my immediate bills. I have no idea how people who do are able to get by.
I never would have made it through this experience without my family. I am a single man in his 30s, and I was forced to move back in with my parents for an extended period after the injury. (The concussion itself lasted a month, and I have very little memory of that period.) Thank God they lived close to me when it happened.
The police caught the woman who did this to me before my concussion even wore off. She had been stealing phones from lots of people this way, though I was the only one to get hurt. A few months after my injury, I went to court to testify about my injuries. There she was, in an orange jumpsuit and shackles. When the judge asked me to describe my injuries, I fought to hold back the tears. I would like to tell you that I was successful; I was not. The woman was sentenced to two years in prison.
Two and a half years later, I am gearing up to fully re-enter normal life. I have weened off my gabapentin, attended my last physical therapy appointment, and am turning my attention back to my career. While my arm still doesn't feel right, and probably never will, I have gained almost full range of motion back and am now working on rebuilding the strength. I am not in daily pain, just mild discomfort. I don't think my physical therapist or doctor expected me to recover as much as I have. I am very lucky.
I found this board to be very helpful, particularly in the immediate wake of my injury. If you have just suffered a TBPI, here's what I would like you to know:
1. Find a doctor (and a physical therapist) who specializes in brachial plexus injuries immediately. Do not wait. Do not fuck around with somebody who has not seen this injury several times before. If you need surgery, the early months are critical. If you have to travel to do so, travel -- it's worth it. Access to Stanford Hospital made all the difference in the world for me.
2. Do not put your life on hold while you wait to heal. Recovery is slow. Very slow. I wore sweatpants every day for a year. Find a project that you can work on in the meantime. I began podcasting and coaching at the local high school and some other ventures, and I'm sure these things kept me from becoming depressed.
3. Talk to other people about it. Do not keep it bottled inside. This is a sure-fire recipe for depression. For me, it was a hard decision whether or not to talk about this issue on Facebook. I did not want to be defined by my injury. In the end, I chose to talk about it in moderation, and I am glad I did. You will feel less isolated if you do.
4. Do not settle for "no." If your doctor doesn't know what to do about your injury, don't just accept it; find one who does. If you get denied disabilty payments, don't accept it; appeal. I am glad I asked lots of questions and did not rest until I was satisfied with the answers. This is a rare injury and not many people understand how to deal with it; don't assume that they do.
There's a good chance that what you are going through right now is the most difficult thing you will ever have to face. I understand, I've been there. I feel for you. You will have a lot of adjusting to do. But please stay positive -- it does get better.
It did for me.
I was lucky that I found this board early on, because it made me realize how important it was to get treatment right away. I am also extremely lucky that the accident happened near Stanford Hospital, and that I was taken to their ER. Stanford has a doctor named Catherine Curtin who specializes in this type of injury, and she made an enormous difference for me. Their physical therapy department is also very familiar with this type of injury, and I spent two and a half years under the care of Leta Jones there.
About six months after my injury, I underwent my first surgery. They pulled six inches of nerves from the back of each of my calves and used them to rewire my shoulder and arm. The tops of my feet are permanently numb and the back of my legs look like Freddy Kreuger slashed them, but we saw improvement. Slowly, I regained movement in my fingers and my wrist.
But still we were seeing no improvement in my bicep. At the one year mark, I underwent surgery for a second time. This time, they spliced the nerve that runs down to my pinky and wired it over to my bicep. (They wanted to do this in the first surgery, but the nerve was still too damaged.) About two months later, I saw a flicker of life in my bicep. I can now curl about 5 pounds, and I continue to work on it.
My shoulder is still, to this day, out of its socket. They measure how far out it is by "finger widths." After the injury, my arm was hanging three finger-widths out of the socket. I had to wear a shoulder brace over my shirt and keep my arm in a sling for over a year. Today, my arm is only half a finger-width out of place. I no longer need a brace or sling.
Like many people here, I found workarounds for the lack of an arm. I used a "suicide knob" to drive my car, and bought velcro shoes. I learned to crack open an egg with one hand. The most frustrating thing for me was the small things that I couldn't do when my arm was paralyzed, like not being able to put my shirt on over my head or cut my own fingernails. Filing papers frustrated the hell out of me.
The worst part about the injury was not the lack of an arm, but the fatigue. I haven't seen this discussed much here, but I suffered from what I assume was Chronic Fatigue Syndrome. I would start feeling tired after lunch. I'd sit down for a bit just to rest, and inevitably fall asleep. It would always be a very very deep sleep, much different from the quality of my sleep at night. When I woke, I would be in a deep brain fog. I did not want to talk to anyone or do anything -- not even watch TV. I was there, but I felt like my mind was elsewhere. This would often last for the rest of the night, and I was completely unable to get anything done. As an ambitious workaholic, this was very out of sync with my character.
Gradually, the fatigue became less frequent and less severe. While exercise would definitely set it off (always 24 hours later), it could also be triggered without exercise. The most frustrating part was not being able to figure out what caused it. Just as infuriating was the response by other people when you tried to explain the fatigue to them. "We're all getting older," they would say. I would want to yell back, "I'm not getting older! I was run over by a car!" But over the years, the fatigue has decreased. Now, I only experience it once every few weeks, and it is much less severe than it had been.
For the first year, I was eligible for state disability assistance. After that, you need to qualify for Social Security disability assistance. I applied and was denied, even though it would have started the day I got out of my second major surgery. I appealed and was denied again. The system is not built for people who have an injury with effects that last longer than a year and shorter than forever. So I found a lawyer who would take the case pro bono. We appealed again and I had to go before a judge and explain my story. Believe me, that's a humbling experience. But a couple months later, I found out that I had been awarded 18 months' worth of disability. Months later, I am still waiting on the check. While the payment will be a huge help, I am fortunate that I do not need it to pay my immediate bills. I have no idea how people who do are able to get by.
I never would have made it through this experience without my family. I am a single man in his 30s, and I was forced to move back in with my parents for an extended period after the injury. (The concussion itself lasted a month, and I have very little memory of that period.) Thank God they lived close to me when it happened.
The police caught the woman who did this to me before my concussion even wore off. She had been stealing phones from lots of people this way, though I was the only one to get hurt. A few months after my injury, I went to court to testify about my injuries. There she was, in an orange jumpsuit and shackles. When the judge asked me to describe my injuries, I fought to hold back the tears. I would like to tell you that I was successful; I was not. The woman was sentenced to two years in prison.
Two and a half years later, I am gearing up to fully re-enter normal life. I have weened off my gabapentin, attended my last physical therapy appointment, and am turning my attention back to my career. While my arm still doesn't feel right, and probably never will, I have gained almost full range of motion back and am now working on rebuilding the strength. I am not in daily pain, just mild discomfort. I don't think my physical therapist or doctor expected me to recover as much as I have. I am very lucky.
I found this board to be very helpful, particularly in the immediate wake of my injury. If you have just suffered a TBPI, here's what I would like you to know:
1. Find a doctor (and a physical therapist) who specializes in brachial plexus injuries immediately. Do not wait. Do not fuck around with somebody who has not seen this injury several times before. If you need surgery, the early months are critical. If you have to travel to do so, travel -- it's worth it. Access to Stanford Hospital made all the difference in the world for me.
2. Do not put your life on hold while you wait to heal. Recovery is slow. Very slow. I wore sweatpants every day for a year. Find a project that you can work on in the meantime. I began podcasting and coaching at the local high school and some other ventures, and I'm sure these things kept me from becoming depressed.
3. Talk to other people about it. Do not keep it bottled inside. This is a sure-fire recipe for depression. For me, it was a hard decision whether or not to talk about this issue on Facebook. I did not want to be defined by my injury. In the end, I chose to talk about it in moderation, and I am glad I did. You will feel less isolated if you do.
4. Do not settle for "no." If your doctor doesn't know what to do about your injury, don't just accept it; find one who does. If you get denied disabilty payments, don't accept it; appeal. I am glad I asked lots of questions and did not rest until I was satisfied with the answers. This is a rare injury and not many people understand how to deal with it; don't assume that they do.
There's a good chance that what you are going through right now is the most difficult thing you will ever have to face. I understand, I've been there. I feel for you. You will have a lot of adjusting to do. But please stay positive -- it does get better.
It did for me.
awesome post and us 
A life time and Trying and first post happen here