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.

Hi yes I saw my surgeon and he just said it was one of those things that happen during sugery and I was unlucky but nothing else. I live on my own and don't have family except my two budgies who are great, I do feel depressed and can't get motivated to do anything, I guess I am afraid and unsure of what will happen next with my body. I seem to have a lot of symptoms common with people here but others aren't so common so I wonder if there is something else going on ! I will see my doctor next week and insist that he does something to help, if necessary I will stage a sit in ! Thank you all again and hope you are having a good day:cool:

In need of advice for travelling
 

In need of advice please, I had a mastectomy which went wrong and now have PN, part of my condition is worrying me, when I go for walks I suffer for the next 2 days and cannot do anything. I feel pressure on my throat and back of neck and the pain in my back is much worse. I am travelling home to Ireland on 13 June for 2 weeks with my Mum and I know that with the luggage and the long walk in both airports that I am going to be out of commission for 2 days afterwards. Does anybody have any tips or advice on how I can reduce the impact of this ? or indeed are these symptoms normal for PN sufferers? Does anybody else have them? Very worried and praying for replies.

I wonder if a little physicial therapy would also be appropriate.

judi

Hello angel
 

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

Help needed on travelling
 

It was lovely to read your reply ginnie, thank you. However I do feel alone as I don't know if these symptoms are part of PN or not. The throat constriction, the upper and lower back pain and other symptoms are not mentioned by sufferers of this dreadful disease. I am worried about travelling and problems I will have when I arrive, I just don't know what to do anymore. I can't even walk without suffering for 2 days, I am not feeling sorry for myself but I am looking for ways to improve my life and help on travelling. Can you advise me on these please right now i just don't want to be here I am so fed up and just lost.

How about asking to have a wheel chair and or a cart that many airports have which can move you and your luggage to the gate you need to be at. And they can make arrangements at the next airport to meet you with the same type of equipment you might need. I've done it and it worked great. JMO

Hi angel
 

Hi, and sure I am here. You are not alone. NT does not abandon anyone here, and somehow we all wind up in a better position. If you are having trouble with your throat. I would address that first with an upper GI doctor. This can be part of PN or a number of other issues. It can be serious, and compromise eating, swallowing or even breathing. Throat issues should be checked out, and therefor when you do it will reslove some of your worry. A good GI man usually is a good field of doctors, and most of the time very compssionate. I have had a number of swallow tests, and endoscopies myself. Nothing to worry about, easy tests to get through. PN is weird. I have it in my foot, traveling up my left leg. There are so many different causes, that a good neurologist is important too. You need to get this all looked at, and then think about travel. If your life is being compromised because of your medical conditions, go check them out so you can get back to travel. Put your priorities into your health first. don't think about travel just now, as in the course of things that is not what is important. Your health is important, more than your wish for travel. Do you kind of understand that?. If you are feeling ill for days after doing something, this is the time to really get to the bottom of what is wrong, and address it so you can go on with what and how you want to live your life. Tell the site where you live if you care too, somebody may be able to recommend some doctors in your area. If I were in your shoes, I would actively get the help, try to get some resolution, so you have the ability to do all the things you still want to do. Put the travel up on the back burner and go see some good help. This site will be here for you and so will I. It isn't fun to have medical problems, but they can be made to be in the back ground, not an all comsuming problem that takes away your quality of life. Take care, write any time, I will try to answer you. ginnie

post pone travel?
 

Can you post pone the travel, until some of the issues are resolved? or do you have to go because of family etc? Can you address these issues once your arrive at your destination? ginnie

I have to go as my Mum is very poorly and needs me, I am so scared of something going wrong before I see her or have her see me in pain, it would really upset her. I do understand what you are saying and appreciate the fact that now my health should come first. I've always shrugged off any health issues I had in the past and never had time for me, put my family first etc. I am divorced and live on my own now and my family are all over the place so I don't have the support or backup I need when going to see my Dr who is really a great guy but doesn't know anything about PN. I will make an apmt to see him when I come back on 27th June and write things down so I remember. Thats a great idea about getting help at the airport I shall email the airline now and see what they can do, I feel like a fraud though do I really need a cart or wheelchair? others are so in need of them and people can't see whats wrong with me, its not visible per se is it? Have you flown and if so how did you feel on arrival?

I have a wheelchair and scooter for my POTS. Even 15 year old girls with POTS use them. You cannot see what is wrong if you have most problems in need of a w.chair. Just do whatever helps you.

I use them in large stores because the blood does not stay in my head and heart. I can walk fine in restaurants, small stores now. My husband and I can do fun things and get a lot of errands done easily with my scooter etc.

They are just tools to help us. Just because you have no broken leg to show people doesn't mean it will not help. I never wonder why people are in a w.chair. I always just hope they feel ok. Most people don't care why we use them.

traval and airport
 

If you have to go, use the wheelchair, and all services at the airport. Not all illness is visable. I only walk with a limp, yet I use a wheelchair when I have to. That is OK to do. I do wish you could get into another doc however before you leave. Some inner voice of yours is warning you by what you are saying in your posts. Listen to that inner voice. do not doubt your feelings about your own health issues. What ever you do, you are not alone, and folks here will be there for you, even over seas and back when you get home. Keep in touch. ginnie

Okay I will ring the airline and ask for assistance it will mean a lot to me and Mum, at least I won't be in pain for days afterwards. Thanks Ginnie, u sound totally in control of your illness can I ask what it is you have?

Hi angel04,

If you are out of commission for a couple of days after the long walk at the airports and handling your luggage, you do need to either use a wheelchair or one of those carts that you and your luggage can ride on. Nothing wrong with that. Just ask. No reason not to. You will feel so much better without having to walk that far in the airport. I know.

Re: laughing angel
 

I so wish I did have control of my illness... I come back here all the time for support. I have four auto immune diseases. My joints are shot, had several spinal fusions, now need my ankles re-built to walk. too weak to do the surgery, and on pain killers. Well, I can say I manage, but I do need all the help I can get here. Taking suppliments for the first time. first auto immune problem was at the age of 29, kinda been down hill since then. Was in a trial study for 10 years up in columbia University med. center. This kind of beat my immune system into correct behavior. Problem may have started according to mayo clinic, from DDT in the blueberry fields in Michigan, or some ground contamination. Had epson Barr, very young at 9 years old. Many things were suggested never proved. Imbalance of T @ B tymphosytes. All the troops are called to fight and they forget where they are going. I am OK, doing alright with NT and my friends here. I also am not alone. I have a friend I live with who is wonderfully supportive. Friends are important to get you by when your own strength fails. You will also find friends right here...me! ginnie
Nan is my friends name and she is also my spell check most of the time when I am line, can't spell worth a dime.....

Ginnie u sound wonderful and u are dealing with ur illness from a very young age, how do u do it, I know u have friends here and ur Nan sounds like ur lifesaver, but inside how do u cope? thats what gets me where do u get the strength from? I admit to being a newbie but what is NT, I am not familiar with all these terms and T @ B tymphosytes sounds like an alien language to me, what does it mean, I would love to get to know u better. Thanks so much for taking the time out to answer me, I needed to talk and its not something I did before but I am learning and I value the advice I get from this forum. The people here ar my only friends now as I tend to keep very much to myself and don't interact with people, basically I don't like them and prefer animals, if that makes sense, live and learn right ! Big hug x

Hi angel
 

You can also PM me. Up at the right hand top, where it welcomes you with your name. click on it and you can learn to private message someone. What you say can be kept more private. My real name is ginnie, always used it, as I didn't know better to use a different Name.
As far as being strong, no I really am not. I do pray alot, that is one way I cope. I cry alot, and stick with those people who have a positive outlook. Like I said, I really do run back to NT alot. I am scared over my health as alot as others here are. I found out I am not alone either in suffering. We find our way in this big old world by reaching out to each other when we hurt. That is the best way I think to help with what you are experiencing. share it, and see if others can help some. I found most of the friends I have through the art field. I was an artist for 30 years. I found Neuro talk, being scared half to death and sick over the fear, when I faced my last spinal fusion. All the people here helped me through that surgery, and did get me through it emotionally. You will find alot of good souls here too, because we have the common element of having to face difficult things. I am not strong, believe me, I fight my way through things just like the next person, with all the frailities humans have. Try prayer too. I also distract myself alot and am a book worm. Nan my helper and friend was sent by I can only say, by some other means unknown. Wound up driving a truck rescuing animals for two years. We went to the same classes to learn how. I did this during the time my mother was failing. It gave me some time to do something I wanted to do. I had my health, or most of it then. We figured this world is really hard after 911, and I asked her to help me and move in to the spare room. I sure needed help, and we saved each other in many ways. Two old biddies, trying to hang out as best as we can! We both pray with other friends too. There are several neighbors I have, that we keep close to for strength. As far as your love of animals goes, well..... we already have something in common. See how easy that was? Keep in touch ginnie

About abreviations angel
 

NT stands for Neuro Talk, the name of the great site. T @ B lymphosytes are part of the immune resonse we get. Killer white cells, the fighting force the body has to get rid of infections and problems. T @ B are called just that, and they try to help the body. In my case they are a bit confused! ginnie