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  • Profile picture of shbae45

    shbae45 replied to the topic Need help! Chronic neuropathic pain after ENT op w. unique causes of aggravation in the forum General Discussions on Pain 9 years, 10 months ago

    Dear Micke :

    Thank you so much for your opinion and information. I feel happy with your post and feel relieved with your comment that “it does not sound far fetched either.” I have sent out my story to many institutions including American Pain Society, but their response was no reply or stating reason of objection to circulate my story; their bylaw that prohibits circulation of emails to their members with private cause.

    I have used lidocaine spray (I sprayed not instilled, though), but to my regret it only aggravated the pain. I think lidocaine was just an irritation material for me at the time. However, it was one and half a years ago so I don’t know how it will work now if I try again.

    Cold temperature is also problem. When I am out in cold temperature the pain aggravates. Cold water, too. But, doctors said my case is not CRPS, just similar but very unique anyway.

    I will keep sending out emails to related institutions (including places you suggesed) hoping that the person at the info desk decides to circulate my story to their members despite the bylaws, which I believe is not an easy job for him or her. In fact, I wish I can find insiders of such institutions who are willing to help me. For example, someone who are the members of such insitutions who can dispatch my case to their colleagues, which is more realistic way to get it through.

    I was deeply moved by your concern and information. May I keep in touch with you?

    Shinho Bae in need.

    • Profile picture of Micke Brown, BSN, RN
      Micke Brown, BSN, RN replied 9 years, 10 months ago

      Please do keep in touch. Why don’t you join our chat room and talk with the others who have experience pain over the years. They may have some insight. We are there every M, W, F from 11am-12pm ET. Have you met with a pain specialist who understands neuropathic pain? I also wonder if using castor oil may help. See https://paincommunity.org/the-wonders-of-castor-oilthe-oil-that-soothes-the-pain/. I know it may sound far fetched, but it might help and certainly could not hurt, right?

      • Profile picture of shbae45
        shbae45 replied 9 years, 10 months ago

        Dear Micke:

        Thanks a lot for your comments and suggestions. I will try to join the chat room though it is 1AM-2AM at local time here.

        But in the case castor oil, I’m a bit hesitant to use it because I heard the oil has a unique smell and as you understand I am vulnerable to almost all kinds of smell.(I will have to apply the oil into the sinus if I decided to try). Maybe I will become brave enough to try it some day.

        I already have met many pain specialists who understand neuropathic pain. Some of them practiced the area for about forty years, but no could give me any practical solution. One of the most prestigious pain doctors in my country told me that the pain I’m experiencing is not curable and I have to admit to live with it throughout my life controlling the pain with medicine, which made me so frustrated.

        I wanted to contact with pain societes and associations to find out physician who have seen the same or similar case to mine because (1) I wanted to know any solution to cure the pain and (2) I thought It would be helpful for the malpractice lawsuit that I am going to file if I find the fact that there are the same or similar cases like mine out there as it could work as a supporting evidence. However, despite my constant efforts to contact such institutions I couldn’t get any help from them. I reallly wish I could find friends who know staffs of such institutions or member physicians of them and can help me out to arrange a sort of survey process with all the members if they have seen similar case.

        As promised, let’ keep in touch. Thank you again and have a good one!