January 31, 2015 at 10:17 am #5545shbae45Member
A patient with severe chronic neuropathic pain in the nose after ENT operations with unique causes of pain aggravation (like cigarette smoke, hot steam, or various smells) requests your keen interest!
It would be highly appreciated if you tell me whether you have experienced or heard of the same or any similar case to mine as the following. If you are quite busy, please simply send your reply as “Yes. I have seen such a case at—” or “No. I haven’t seen such a case” to my email address “email@example.com.” What I urgently and firstly want to know is if there is the same or similar patient like me on the globe. Seeing a doctor for treatment will be the next step. Please help!
Dear friends and physicians out there(esp. Pain or ENT doctors) :
My story about the pain goes back to May 4, 2012 when I had an ENT operation at a small ENT clinic in a bid to cure sinusitis, deviated nasal septum and to get rid of several polyps in the nose. (FYI, before the time of the operation, I have never had such pain I am currently suffering from and I have never been to any pain clinic or something.)
During the operation, I felt something like a touch of extremely hot tool and a feel of electric shock in a flash in the left nostril while the doctor was doing the job in the left nose (FYI, the operation was done not only in the left nose but also in the right nose) and instantaneously I spit out a short scream out of severe pain. (FYI, the chronic pain I am suffering now is only in the left nose and sometimes left face, but never in the right nose or right face.)
Right after the operation I was moved to a recovery room where I felt extreme pain which was out of control and I asked a nurse if she had given me all the medicine and injection that the clinic usually gives to patient like me right after the similar operation to mine, but the answer was “yes” so I asked for anything that can soothe the pain but rejected. I went home with the same medicine as the doctor prescribes to patient like me and I took the same medicine as ordered but it could never control the pain. While I was home wrestling with the pain, I sent text messages to the doctor explaining uncontrollable severe pain, but his answer was “You do not worry. The pain would disappear soon” but the pain never disappeared and lasted ever since until the present time.
For about 3 months after the incident, the doctor gave me around twenty times of serious treatments in the left nose, including one time of operation (although less complex than the initial operation, after about two months’ time since the initial one), saying that those might solve the problem of the pain, but each and every treatment I had which lasted for a half an hour was almost like torturing as I felt unbearable pain and I shed lots of tears in spite of myself during each treatment because it touched many times the point in the left nostril that I feel severe pain.
I assume that the nerve in the left nose was damaged at the time I felt a touch of extremely hot tool and a feel of electric shock in a flash during the operation of May 4, 2012, thereby causing the severe pain that I am currently suffering from, and around twenty times’ of treatments and one more time of the operation transformed the pain into chronic pain.
I think such an assumption is not boundless because prestigious pain doctors here told me that touches of harmed nerve after once harmed very likely make the pain to develop into chronic and deteriorated one.
After all, I was diagnosed to have a severe neuropathic facial pain in and around the left nose by several pain clinics. The pain can be controlled at some degree by medication although the dosage and kinds of the drugs are remarkably high and various, but it is aggravated by various events.
It is aggravated, as other neuropathic pain patients generally experience, by stress, bad physical condition, etc., but, different from the others, my pain is too strong to control with the medicine, and the physicians finally concluded that only narcotic analgesic (mainly morphine) shot can soothe the pain when aggravated. I took many times of nerve blocks and other treatments at pain clinics, but all in vain.
Unbelievably rarely and unluckily enough and different from the others, however, my pain is also aggravated by cigarette smoke, hot steam (from hot coffee or tea, or hot food), and various smells (like paint, wax, air freshener, disinfectant), which also requires me to get narcotic analgesic injection as a sole method to kill the pain. (FYI, the pain is around 8 or 9 out of 10 in the pain scale when aggravated, and before May 4, 2012 I have never taken any narcotic analgesic in any form, i.e. medication, injection or whatever.) Please do not jump into conclusion that I am addicted to narcotic analgesic (In fact, the physicians don’t think I am) because the hospital where I am taking the injection strictly controls the dosage and times, and I never ask for the injection unless I encounter one of the aggravating factors.
I think above-mentioned unique aggravation factors are closely related to my experience that I had my nerve damaged when I felt a touch of extremely hot tool at the time of the initial operation and thereafter the nerve in the nose became extremely sensitive to hot substances, like cigarette smoke, hot steam, etc. In case of cigarette, the temperature when it burns is about 500-800 degrees Celsius. Considering water boils at 100 degrees Celsius, we can infer how much hot cigarette smoke would be. (Some might misunderstand that my pain is due to a sort of the Pavlovian or respondent conditioning phenomenon meaning that it is a psychological matter, but please note that it is already verified by my doctors and also by my experience that it is not the case.)
I think you will agree that man is almost impossible to live normally, in this civilized society, without encountering cigarette smoke, hot tea or coffee, strong smell, even with any possible extreme care and you can imagine how miserable life I manage when I have to cool down all the food before I can eat and I have to watch smokers over and over again even when I go to a CV store nearby, which most of the time turned into failing to encounter smokers and strong smell, as a result and naturally, I had to confine myself home to remain relatively safe from such aggravation factors after giving up my job that I obtained after graduating from a graduate school in Washington, D.C.
To my regret, some doctors I met here in South Korea say they haven’t experienced any such aggravation causes of pain in the nose and have never seen any dissertation or report nationwide and worldwide (to the extent they have researched) that discusses above-mentioned situation, implying that they don’t have meaningful ways of cure such pain.
In conclusion, I wonder if you have ever seen such unique causes of pain aggravation and know how to treat such pain. Should you have any advice or comment for me who lives a miserable life and has to live such a miserable life to death, please email me at firstname.lastname@example.org. Otherwise, please kindly broadcast my story through email or SNS to anyone who you think can comment on my case, especially to Pain or ENT doctors outside South Korea.
A patient in need in South Korea
February 4, 2015 at 11:49 am #5550Micke Brown, BSN, RNParticipant
SHBAE45: I have not seen this type of case, however, it does not sound far fetched either. I was wondering if instilling viscous lidocaine might help. What happens with cold temperatures? You might ask this question to the American Association of Pain Management, American Pain Society or the American Association of Pain Medicine where members are healthcare professionals. Since it does sound like a possible neuropathic pain condition, RSDA may share some insight too.
February 5, 2015 at 11:37 am #5557shbae45Member
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.
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