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Post by gofrogs152 on Jul 15, 2015 16:46:17 GMT -7
My 21 year old son had a four quarter amputation of his left arm about four weeks ago due to osteosarcoma (bone cancer). Since then he has really struggled with phantom pain. They have him taking 10 mg Oxycontin every 8 hours plus Dilaudid for break through pain. They have started him on Tegretol (400 mg twice daily) and are slowly decreasing his gabapentin as that didn't seem to be working. I think the pain has improved somewhat but he still struggles with it quite a bit. We also seem to notice that physical activity increases the pain.
He has started chemotherapy again and obviously the combination of continued pain plus the torture of chemotherapy is a lot to handle. He's had a very good attitude and outlook throughout this, but I can see that the pain and chemo side effects are really starting to weigh on him.
Any suggestions anyone can provide regarding pain management or different therapies would be greatly appreciated. Also, any guidance about how long we might expect the pain to continue would be helpful. We are all trying to patient but it's incredibly hard watching him go through this and not being able to help him.
Thanks in advance for any advice you may be able to provide. |
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Post by stonecutter on Jul 16, 2015 7:24:22 GMT -7
Good morning gofrogs152. Welcome to the forums. I'm glad you found us. I can't imagine what you're going through. Everyone is different when it comes to phantom pain. Mine feel different to what others describe and the intensity and frequency of them are different also. For me - (and bear in mind that I an a below-the-knee guy): - Sometimes having a bath helps (I think it's the heat). Most times it doesn't. - Sometimes wrapping my stump helps. - Just about all of the time continual stimulation of the end of the stump helps (massaging or lightly tapping on the the end usually when it's wrapped) I've never tried some of the drugs that are aimed at the reduction of phantom pain. Here's a link to some phantom pain facts from the Mayo Clinic: www.mayoclinic.org/diseases-conditions/phantom-pain/basics/treatment/con-20023268I hope you find a solution quickly. |
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Post by Deleted on Jul 16, 2015 9:39:30 GMT -7
I also have an arm forequarter amputation. I am close your son's age, and have never met any other young person with this.
Mine was the indirect result of trauma, so I have no experience with the chemo. I have many other handicaps, too.
Thus, I have vast experience in being a handicapped young person.
I am sure I could help. Write to me here if you want, or have your son write. I bet he has never met someone our age with this problem, either.
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Post by snowyh on Jul 17, 2015 16:51:53 GMT -7
Hi, gofrogs152. I underwent a right forequarter amputation for osteosarcoma when I was 15. That was 40+ years ago, so I'll really have to reach into my fading memory on this one. First of all, as it's only been a month since your son's surgery, it's important to distinguish between surgery pain (physical pain originating at the surgical site) and phantom pain (feels physical, but its genesis is in the brain). The distinction is important because in my experience surgical pain can be treated effectively with pain meds, whereas phantom pain cannot.
I remember having a great deal of pain just after surgery, which lasted for months, and for which I was prescribed Valium. It felt like I was being hit continuously by a cattle prod in my stump area, and it made me quite* miserable. I could not have survived without the Valium. I don't remember whether physical activity had any effect on the pain--only that I didn't feel like moving much at all because I was in so much pain. The pain decreased gradually... VERY gradually over the course of maybe six months** until I no longer needed daily pain meds. I never really knew whether my post-surgical pain may have really been phantom pain... it surely feels like the phantom pains I have dealt with for more than 40 years, but the fact that they were so very bad at first and gradually got better makes me think they may have been related to the surgery.
I still suffer from the same type of mild to severe pain on an occasional basis (maybe 3 bouts per year that last 2-3 days each). My drug of choice now is Lorazepam (1 mg), which is a narcotic but not a pain reliever. My phantom pain seems to be triggered by stress, which is why I think Lorazepam works to calm me down, which in turn reduces the intensity of the phantom pains. It helps, but never eliminates the pain. BTW--I have found that most docs don't know what to prescribe for phantom pain; they just take my word for it and write the prescription. I have also read that some amputees obtain relief from severe phantom pain using Neurontin, an anti-seizure medication.
Feel free to send me a personal message if you would like to discuss further.
Best of luck to you and your son (chemo's a bitch),
Helen
*understatement
**That's a guess...it could have been only 3 months--all I remember is it took way too long.
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Post by gofrogs152 on Jul 22, 2015 10:39:20 GMT -7
Thanks to everyone for their responses and thoughts. Jill I will pass on your message to him.
Helen, it is wonderful to hear from someone who is 40+ years on the other side of this. We are very hopeful as so far (knocking on wood) there has been no sign of metastasis and the surgical margins and lymph nodes were clear. We go back into the hospital for chemo on Friday. If all goes well, we will finish chemo right after Labor Day. Then hopefully we can start getting him healthy again.
The pain is slowly improving. This week we started trying to do mirror therapy which seems to have had some success in places like Walter Reed. I think we have to wait at least a month before we determine whether it is successful, but hopefully that will help over time too. Unfortunately I think patience is going to be most important for us. It's very hard seeing him in pain and being so out of it because of the narcotics he is taking. But I'm focusing on how he is improving and hoping we can continue that upward trend, even if it is not as fast as we would like.
Thanks again for your responses and thoughts.
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Post by snowyh on Jul 23, 2015 16:50:03 GMT -7
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