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05-20-2012, 05:29 AM | #1 | ||
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Junior Member
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Hi I have just joined this forum and like you say I am confused and very anxious about my diagnosis. Thank God for your site, I have no idea what to do with myself as the doctor told me then said goodbye. Can you please help me as I cannot live with this much longer.
I had a mastectomy in August last year with a lot of complications, I had a good day my wound was weeping as I had an infection and went shopping, I carried 3 heavy bags put then down when I got home and then my whole body went to sleep, I mean literally I could feel nothing. I spent months in bed with tingling, numbness, pain all over. I could not feel my tummy and still can't, my legs, arms, back neck are still numb and my face goes numb. I had tests done and they could find nothing wrong until 8 months later I had a nerve conductive test and then I was told I had PN. It doesn't make sense to me as I have the tingling in my legs and arms but my spine feels like its being crushed especially at night. The wound knit back too tightly and I'm the nerves were compromised hence all of this. The tightness goes along the wound and into my back with a lot of pain. My head sweats a lot and I have to wash my hair daily (if I can get motivated) if I don't I get a fungal infection on my forehead and front of my head. Can anyone help me with what to do now, what to take to help and anything else, I just feel very down I just don't want to be like this, I can't cope with it. Thank you Angel |
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05-20-2012, 06:38 AM | #2 | ||
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Member
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Many people on here developed PN after cancer, and will be able to help you. There are supplements you can take to rebuild your immune system and help what can be healed. There are also medications, like gabapentin which dampens nerve responses, and opiates like oycodone and tramadol which can help with residual or stubborn pain. There are much stronger pain medicines as well if necessary. Most of us here seem to be at least on gabapentin or Lyrica, a newer version of it.
Your greatest immediate need would seem to be for a neurologist who is more knowledgeable and compassionate to get you started on some treatment if possible or at least medication for quality of life issues. It is unconscionable for them to let you suffer like this. Many neurologists do not like to treat pain and would rather pass you on to your family doctor, but they should at least suggest something and explain why they prefer someone else prescribe the pain meds. Often it is because it needs to be someone who sees you every month or so and not once a year. ( or never, as my neuro dismissed me since there is no treatment for my PN). Most cancer related neuropathies seem susceptible of improvement, so hopefully you will get some encouragement from more knowledgeable people. I just wanted to express my sympathy for what you are going through. It sounds ghastly, but you should be able to get some relief with a better doctor or pain management specialist. |
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05-20-2012, 06:47 AM | #3 | |||
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Wisest Elder Ever
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There is a bundle of nerves under the breast, called the brachial plexus.
If this is damaged from the surgery, or infection, the nerves there would be acting up. http://www.google.com/imgres?q=brach...r:5,s:24,i:204 back view: http://www.google.com/imgres?q=brach...:15,s:54,i:292 Chemo drugs and some antibiotics also can damage nerves. Do you know what antibiotics were given for the infection? There are supplements that may help heal damage to nerves from drugs or toxins. If you want to know about them, just ask.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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05-20-2012, 01:28 PM | #4 | |||
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Welcome. There are many things you can do to improve. Like Mrs. D said, what meds were you taking? I have improved SO much. My doctors do know how to treat nerves but most have no idea. I am glad you are here.
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05-20-2012, 02:56 PM | #5 | ||
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Junior Member
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Yes they put me on augmentin but I was hospitalised because they made me dizzy. It was my own doctor who gave me the news, he got the results from the neurologist. He was ready to send me to a psychoanalyst as he thought it was all in my head. I persuaded him to send me to have the nerve conduction tests and they came back saying I had PN. Its really great to hear that they will heal, I was losing hope fast and was living in terror of my own body. I was afraid to sleep and walk around and felt like a stranger in my own home. I feel now that I can go on but would really appreciate help on any supplements I can take which will help my nerves heal. At the moment I am on gabapentin but they don't touch the pain and tightness in my chest from the mastectomy. Any help would be very much appreciated, I am glad you are all here and I think you are fantastic in dealing with this. You are angels. Thank you x
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05-20-2012, 04:23 PM | #6 | ||
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Junior Member
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05-21-2012, 03:49 AM | #7 | |||
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Wisest Elder Ever
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Angel, did you have a radical mastectomy? Does the scar still hurt, and is the infection gone, are you healed up yet?
Did you have chemo?
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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05-21-2012, 04:19 AM | #8 | ||
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06-03-2012, 09:41 AM | #9 | ||
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Elder
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I am glad you found this forum too. I have been here for two years, and don't plan on going anywhere. I am sorry to hear that you have such medical trauma, and that your doctor said goodbye. Personally that is terrible to do to a patient, and you deserve better treatment than that. Please seek another pain specialist, or a PCP who has compassion, and can direct you to some better help. It does exist. Also consider a pain specialist in conjunction witha Physiatrist. This kind of doctor treats the whole person, not just your pain. They have a mind, body, kind of connection that they adhere to. This will help with your mental state in dealing with your health issues. There are also alot of medicatons to help you. Do find ones that work for you, and that can ease your pain and discomfort. Nobody wants to live a life where the quality just isn't there. I hear your pain, and I do know there is help for it. I too am a pain patient, and have received good help for a number of years now. I have PN, but in specific locations, like in my foot after some surgeries that did nothing but give me the PN. I have joint problems. You are not alone, we will be here for you, and I will try to stay in touch with you as you go forward. Try to get the help, and when you do, you will feel like there is a little more help for a life that has meaning. I am here to talk to. I also run back here for my own issues, and get the compassion I need to go forward in my own life. None of it is easy, but this site has helped. I will keep you in my thoughts and prayers. ginnie
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06-03-2012, 01:15 PM | #10 | ||
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Junior Member
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