[Joy]

Pain Diary

I am also in the same position, have also been diagnosed with CRPS and also had my DRG surgery denied this week. Here’s what my insurance gave as the reason (I am not making this up!): “Your request tells us you have had back pain (sic) for a long time. Pain can come from both the body and the mind. We need to know that you have seen a psychologist who has determined that your pain is not in your mind”(…etc etc). I am not sure the DRG stimulator is the way I want to go yet, but the letter was very offensive. I got straight on the phone (the inevitable wait just got me madder) and gave the poor gal in the first stage of the appeal an unequivocal piece of my mind. I am demanding a rewritten letter with the CORRECT pain location (doesn’t the doctor read the person’s medical history???) and an apology for the insults and also for the ignorance exhibited by the MD reviewing this. All pain is a perception from the mind,I told the poor gal (who was very kind and professional and said not to worry it was being appealed on Tuesday by my doctor anyway) and how could a psychologist ever say it WASN’T!!! I was told a doctor or nurse would try to call back in an hour (just before Labor Day, so I wasn’t too hopeful, and of course they didn’t call), but I intend to stick to my principles here. I want my record squeaky clean, for many reasons, not the least of which throughtout this now 3 year nightmare I have even restrained myself from crying in doctors’ office for fear someone might see me as anything other than someone who deserves the best medical care there is to give. Of course I cried after I got off the phone, partly because I felt so bad for emoting so someone who has nothing whatsoever to do with this letter 🙁 , or my hernia surgery-related problem for that matter, but also because I have been a customer for many years and I pay insurance dues, and I continue to work to keep my insurance, and here they are cheaping the process for deciding on procedures out to someone who doesn’t even get the correct body part. Wow, keeping fighting for your rights! I intend to do so too! Can your doctor appeal in a peer-to-peer meeting? That’s what mine is doing

[Joy]

Central Pain after Neurectomy

It’s good to talk with someone who is going through the same experience although I wish no-one was. I have an appt with Dr Tim Davis in August; hopefully he can help. Thanks Dr Towfigh for the recommendation. I too use a Tens; it is a life saver. I am also going to have a dynamic Mri before that appt and my rescue surgeon will also be reading it. I don’t blame my rescue surgeon; he saved my life. The general surgeon is the one who caused all the damage and then just injected me with kenalog when I complained about the new pain. So I now have a deep hole above the surgical site where the kenalog destroyed my tissues. I refused a third treatment from him and started becoming my own advocate. I wish my triple neurectomy had been more successful but at least the mesh that was too big for me and was cutting into me is out. I try to look at it this way. I have never wanted to be a bitter person. I am determine to become an active person again. I try to walk every day and find that helps with tight muscles in my abdomen and back. Also hot baths and heating pads. How about you, any tips? We have got to support each other and get to the other side to a pain managed life. I started a support group for folks like us; not very active, but if you want to join you can email me and I will invite you to the group. I will post the email in the next post. I hope you are hanging in there. I am reading a wonderful book about the Oregon Trail; here’s a quote from the writers father when they were taking a wagon trail trip and the boy averts a crisis and the dad says this to his son: All I am saying is that sometimes you’re doing quite a lot by not doing anything. You’re not quitting. You just keep going. That’s the pioneer spirit.”

[Joy]

Swollen Groin after Mesh Removal

Jgen, my heart goes out to you. I am in a similar situation, but being female, have different issues. I am 18 months post triple neurectomy and meshoma removal. I agree with many of your points but would caution folks that if they know the meshoma is causing problems, the earlier the better to remove it in terms of pain pathways being hardwired. It sounds like you have a wealth of wisdom you have earned. if you would like to join a “secret” facebook neurectomy support group where we can share tips for coping after this rescue surgery, please leave an email here which I can use to invite you. It will be a positive forum where we can talk frankly about what works for us and how to improve our chances for having the best life possible.