Pain post Axillary Lymph Node Dissection

Roadrash--My chiropractor does something called Graston Massage. It worked wonders for me. I started with PT initially and that was helpful but only to a point. Once the Graston Massage therapy started, it made a world of difference for me. The cord is completely gone and I no longer feel the tightness running down from my armpit to my fingertips.

Thank you so much. I just ifnished up calling a whole bunch of new chiropractors in my area. I seriously thought I was going to have to deal with this the rest of my life. I was getting pretty discouraged. Uninformed people just can't understand how this affects bathing, shopping, driving, holding everyday items. Yes, from my arm to my fingertips. You have all given me some hope. Between the painful tissue expanders and this cording, I have been pushed to the nice girl limit.

Hi Texas. I am sorry that you are going through this as well. I don't think people believe me but this is very real. My own ps didn't know what it was or why I was having this pain. I would inflict more pain on myself, if it meant I had a better range of motion. I just tried to message you, but it said I exceeded my limit of messages. Please feel free to email at nancysmulligan@aol.com

Thank you!

That is horrible Homemom. Yikes, I'm losin it after 3 months. I can't imagine a whole year. I keep dropping things because my whole arm to my fingertips go numb.The cording is so tight. I show people but they just don't understand that it's painful. None of my providers reallyunderstand why this happens. There needs to be more research on this becaus I know we are not alone.

It's almost been two years for me and I have the same symptoms as Stenokim.  I am learning to accept it and live with it but still get treatment weekly and do exercises daily in the hopes that I will have more good days than bad.

It's been almost 2 years for me too. I have a lot of the same symptoms as Kim and Lori. Some days are good and some I have more pain and the feeling of fullness and tightness in my armpit area, upper arm and that area where your upper arm rubs my side. I do stretches daily and do need to get back to the PT again. I haven't seen her since the end of September and I need her to work on it again. I thinks it's going to be a life long issue.

roadrash- I'm emailing you the exercises and instructions I have! Expect a message in the next few minutes.

As you all say, only other women who are going through the same understands. It is very hard. I am very stubborn and didnt want to accept certain restrictions of my arm. May 21 will be 2 years. My ROM and strecthing my arm I would say is 90%. I still feel certain numbness on one side of my armpit but I will start a new massage and hope it will help. Havent visited this year yet my PT for the massage she does (myofacial) which also helps as Bren said.

Dont give up coz it does get better. I was about to give up and found a PT very understanding and started again. And now I can even swim.

Have a great week!

Please be very careful about massage! Go to a certified LE therapist. I was going to a regular PT for the cording and tightness. She gave me some stretching exercises that helped some. But one day she started massaging that cording area really hard, it hurt, and my LE specialist had told me "no massage! Ever!" But I thought the PT knew what she was doing so I didn't stop her. Big mistake. Next morning I woke up with a painful swelling on my chest. Yup, truncal LE. Now I have to live with it for the rest of my life, and let me tell you it sucks.

Jennie thank you for the info. I have a PT who is an LE specialist so I was going to ask her. I just want to get SOME feeling back.

linzer, I agree. I have a great LE certified therapist who does wonders. I was thinking more of a general massage at a spa-like facility. While it sounds like a lovely idea, I don't want them doing more harm than good!

texas, i agree that a trained PT is worth their weight in gold! I am almost 2 years out from ALND and still have to go see my PT several times a year. I was just there yesterday for her to work on more tight cords. Seems that no matter how much stretching I do, I still develop tightness that needs professional help to loosen. I too have excellent ROM even with the tightness. So far, I only need 3 or 4 sessions a couple times a year to keep the pain and tightness to a bearable level.

The issues from ALND can be life long, even if we never have to deal with active BC again! Just a daily unpleasant reminder of all we have been through.

No she does not use that method, but I have read others who have that done. She does more myofasial release than anything else. Plus now I am having a shoulder issue that she is working on. It is all due the changed physiology from the ALND surgery. She did show me how to move the fluid from my back and under arm area down to my groin. So now hopefully I will be able to do that on days that it feels "full". She still does think I have true LE as it does not "feel" like LE fluid. It is a steep learning curve and things are always changing!

farmladync--Even though you have good range of motion, the fact that you experience numbness and pain, suggests to me that you may benefit from physical therapy, massage therapy, graston massage, or chiropractic. I have received all of these and continue to receive graston massage, traditional massage therapy, and chiropractic. It has been 29 months since my BMX and ALND (right side) and I still have numbness in my right arm from the elbow through the armpit on the back side--It has gotten less numb but I don't think that after all this time, I will regain total sensation. I also experience tightness in the pectorals. The graston massage, traditional massage, and chiropractic all help. In addition, swimming and yoga also seem to help.

If you have insurance and live in the U.S., you should try getting the insurance company to pay for the graston massage, traditional massage, and chiropractic on the basis of Women's Health and Cancer Rights Act of 1998 which mandates that group health plans include coverage for "physical complications of mastectomy, including lymphedemas in a manner determined in consultation with the attending physician and the patient" [see 29 U.S. Code §1185b(a)(3)]. I actually had weekly breast massage therapy for a couple of months which my insurance company initially did not pay for, however, I wrote them a letter citing the above and they sent me a refund (minus my co-pay amount) for all of the breast massage therapy sessions.

When looking for a therapist, make sure that he/she is trained/experienced with breast cancer/lymphedema patients! If massage is done incorrectly once you have had lymph nodes removed, it can actually cause lymphedema.

I hope that you feel better soon.

Hi all. New to this forum and new to have cancer. I had a lumpectomy last Thursday with Axillary Lymph Node Dissection. Where the lump was removed I feel almost no pain at all. I am finding the underarm pain to be much much worse. I'm glad I searched and found this site today. My problem is that I already suffer from degenerative dics in my lower bak so I have been taking Percocet 10/325 every 6 hours for almost 3 years. Since my surgery, I have been taking one every 3-4 hours. It is getting better but I fear that I will run out before my next refill. I was thinking about Gabapentin and was glad to find that many of you find relief with that also. In addition, spending so much time in bed the last 7 days has caused my sciatica to flare up. Another case for gapapentin! The pain in my butt and leg are most severe when I try to lay down. when sitting up there is very little pain. Even when I keep my legs bent in a sitting position in bed I can't lay. I end up sitting on the edge of the bed for hours n end. Thank goodness for my tablet. I spend half of the night playing candy crush until I try to lay down again.

I expect to begin radiation in about 4 weeks and should be receiving treatment for 7 weeks.

I have found a lot of helpful information and am grateful for all of you who are sharing your stories which help us all.

If anyone has advice on the sciatica pain I would appreciate any input.

Sleepy in New Jersey. Becki