I have just been diagnosed with PN
 

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

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.

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.

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.:grouphug:

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

Angel - how much of this have you discussed with your oncologist and breast surgeon who did the mastectomy? Surely you can't be the first who has had complications from a mastectomy. Perhaps they can refer you to a plastic surgeon or a surgeon who does difficult breast reconstruction who might look at your mastectomy scar and offer some advice.

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?

Thank you so much for all the really helpful replies yes I had chemo and radiotherapy and all went well, I have seen my oncologist several times, he arranged an ultra sound and the results showed that was a fibrous mass and the wound had knitted back too tightly but there was nothing else that could be done. He thought I was an unusual case but offered no other advice, oh he did suggest that I go to a pain clinic and learn how to manage the pain. I am terrified of having reconstruction and would never opt for any operation again even if my life depended on it. I had a good night and slept until 4.30 so I thank god for that much. I just wish I could get the motivation to get dressed and go out for a walk but my head is afraid of my body and something going wrong again. Any suggestions ?

If it is any consolation, if the pain is nerve related, specifically neuropathy, it is unlikely that you can make it worse by getting out for a walk. Exercise can even help re program the pain by increasing blood flow. Even if it seems to hurt more afterwards you won't be causing any damage and the benefits, physical and mental, of being outside and moving far outweigh any discomfort. As much exercise as you can tolerate and of a type that doesn't over stress your limitations is an important part of healing.

You sound as if you are having anxiety issues as well, which is perfectly understandable. You really need a doctor in your corner to help you through this. Proper pain management can give you a much better quality of life, and activity will do wonders for depression which so often accompanies chronic illness. Please don't be afraid to take a walk or to get a second opinion on that scar. I know nothing about this, but that just doesn't sound right.

Angel, I would seek the advice of a good plastic surgeon - one who deals more with reconstruction than cosmetic and find out what can be done, if anything, with the fibrous mass and the wound knitting back too tightly. You said you talked to the oncologist, but what about the breast surgeon who performed your surgery. You deserve answers about this - not just the usual and easy for them (doctors) to learn to live with the pain.

There is someone out there who can help you with what happened with your mastectomy. Keep searching and good luck.