Wednesday, May 8, 2013
Phantom Pains (And a Jason Update)
Yesterday and today Jason's had a bad case of phantom pains. I've decided to write about it because it is most likely going to happen to all who have had amputations. Before I go further I have to write a disclaimer that all the suggestions and advice I give is coming from me, a PTA student and exercise science grad. I am not a doctor or other medical professional (yet) so before you go and do anything I suggest please consult your medical professional that you seek care from.
So what are phantom pains? Its a sensory phenomenon where the amputee feels pain or sensation coming from the amputation site. The sensations can be anywhere from feeling the limb is there (and that it's behaving normally) or feeling pain, tingling, heat, cramping, twitching, or that a part is moving. Jason typically feels like his knee is having intense muscle spasms, but of course he doesn't have his knees. It's a feeling that at the beginning really bothered him, the idea that something that isn't there is telling his brain that is it. He's come to terms with it better but it doesn't make it any less annoying.
Not every amputee has phantom pains but everyone I have talked to has experienced some sort of sensation. In fact in the beginning Jason didn't have any phantom pains but slowly he began to have sensations. Some things that we've found that triggers his pains are dehydration. When he tends to slack on drinking water that's when the pains return. Other times it's just random, like these past two days. He has been drinking bottle after bottle of water, but that's not helping. So what do we do when the pains come? Here are some things that we do and other suggestions that we've been given by his occupational and physical therapist.
-Jason does have pain medicine that he can take, but often time once it wears off the pains return and other times it goes away. There are specific drugs for neurological pain that can be prescribed. Jason was on these at Walter Reed but was slowly taken off them because he wasn't complaining of phantom pain.
-Heat and ice can be affective. Again, sometimes it works and sometimes it doesn't. I usually apply the pack for 20 minutes on, 20 minutes off. Just remember to use lots of layers between the heat or ice pack and the skin.
-Tapping and rubbing the site of the amputation helps take away the pain as well. The tapping and rubbing sends signals back to the brain that the nerves end at the site of amputation and the signals no longer go down the limb. It can also be affective to have the amputee touch the area that he is feeling pain on another person. Again it's about training the brain. Once we were hanging out with another amputee and he got a pain in his ankle (he was a bilateral above the knee amputee) He reached for my ankle and started to scratch it and it helped his pain go away.
-Another way to train the brain is mirror therapy. Using a mirror to look at the end of the amputation sends signals to the brain that the limb is no longer there. This technique doesn't work for Jason, but I've seen it work for lots of other amputees.
Amputee Coalition (http://www.amputee-coalition.org) is a great resource for pain management for amputees, and a good resource in general.
Phantom pains just plain suck. All Jason can do is wait it out or try some of the above techniques to make it go away. But it helps to have a cat to cuddle with too.
For those that don't know Jason had his final surgery to reverse his colostomy several weeks ago. He was in the hospital for a week and had a wound vac on his incision and stoma site until this past Tuesday. He's healed pretty well but it's not fully closed so we are doing dressing changes at home for the next week. My hope is that next week they'll actually stitch close the wounds. Jason is dying to get back on his handcycle and go swimming too, but we gotta wait until he is all healed up. Other than the incision stuff and the phantom pains, he is doing great.
May 30 will be Jason's "Alive Day", the one year anniversary of his accident. We haven't really discussed what he wants to do on that way, but the next day is also his birthday. Any suggestions would always be appreciated (you can comment here or if you are a Facebook friend message me there).
A crazy thing that happened to me was getting to be apart of the starting nine for the Padres game on Military Spouse Appreciation day. I got to run out onto a position on the field, then meet a player and run back off field. I love baseball and this was a fun day for Jason and me.
Posted by bellagirl at 4:34 PM