Help-axillary web syndrome?

fauxgypsy · 09-16-2007, 04:19 PM

Since a week or so after my mastectomy I have been having trouble with a feeling of tightness down my arm to my wrist, almost to my thumb. It also is very tight across my chest. It feels like a steel wire from my sternum to my thumb. At first I thought it was tendonitis, but my surgeon said it was a nerve. Didn't feel like a nerve to me. Then the physical therapist, who had no training dealing with mastectomy patients said it was nerve. So maybe I was wrong. About a week into therapy, when I would try to stretch my arm it looked like it was swelling in the bend of my arm and I could see what looked like cords in that area, felt like cords as well. I did an internet search and found information on AWS. Prior to these studies it was called cording but they didn't know what caused it.

To put all of this into context, I discussed physical therapy with my surgeon the first time I talked with him about the surgery. I asked him if there was anyone in our area that was qualified. He said "several." He was wrong. Then we discussed that I would want to have this available as soon as possible after surgery (I make my living doing faux finishes). It took three weeks after surgery to get it set up. In the hospital I asked him about what exercises I should be doing. He said the woman from Reach to Recovery would explain it. She said that they didn't do that anymore because some of the surgeons didn't wat them to and gave me a book. I was in the hospital 4 days and no one would even tell me when to start the exercises or how often.

I took one of the papers on AWS in to the physical therapist. She remarked that she wished people would stay off the internet. I told her that I was tired of the medical community dismissing any thing I brought up. She is probably younger than my youngest daughter and isn't trained for my problem. I have an advanced degree in biology and when I research I don't go to quack sites. I realize that there is a lot of misinformation but I am beginning to feel that they equate being on medicaid with being uneducated. Anyway, I meet with the surgeon tomorrow for a check up and I am taking him printouts. I also meet with a lyphodema specialist tomorrow at my oncologists office, I am going to dicuss this with both of them. Whether they will listen is something else entirely. Going through this is difficult enough without having your concerns being dismissed.

Back to AWS. Here is a defintion:

. Axillary web syndrome (AWS) (from the BC cancer agency)
Axillary web syndrome is a post axillary lymph node dissection pain syndrome that occurs in approximately 6% of patients1 It is characterized by a "visible web of axillary skin overlying palpable cords of tissue that are made taut and painful by shoulder abduction. The web is always present in the axilla and extends down to the antecubital space, and occasionally to the base of the thumb. Typically, there are two or three taut, tender, nonerythematous cords of tissue under the skin."1 "In the majority of cases these cords extend across the antecubital fossa and into the forearm, occasionally as far as the radial aspect of the wrist at the base of the thumb."1 It can present as early as 7 days post-op, but there is no documentation of it developing more than 8 weeks post-op. It often presents after an initial postoperative delay and resolves within 3 months of onset. It can occur in diverse populations of patients with invasive breast cancers.

The development of AWS appears to be related to an interruption of axillary lymphatics during surgery, although it has been seen in patients with stage IV disease with fixed, matted axillary metastases who have not had surgery. The removal of axillary lymph nodes may promote AWS through multiple mechanisms, and biopsies of axillary webs suggest that lymphovenous injury, stasis, and hypercoaguability contributes to its development. "Lymphovenous injury might occur in the retraction of tissue and patient positioning during ALND. Additionally, the tissue injury from the operation releases tissue factors that could cause hypercoagualability in the surrounding tissues. Stasis of lymphovenous channels would also be expected from the outflow obstruction induced by removal of axillary lymphatics draining the arm."1 There does not appear to be an association between AWS and and lymphodema.

http://www.ncbi.nlm.nih.gov/sites/en...t=AbstractPlus

http://www.sciencedirect.com/science...e08aaa89dd1194

http://findarticles.com/p/articles/m...01/ai_n9370189

Has anyone else had these symptoms? How long did they take to go away? If you have had this, have you regained complete use of your arm? When I explained what I do to the surgeon and showed him pictures of what I do, he said I should be able to get back to work in three or four weeks, I tried last Thursday and paid for it all day Friday. I am hiring extra help for this job but I am wondering if be able to these finishes any time soon, or ever.

Leslie (fauxgypsy)

Montana · 09-16-2007, 04:42 PM

Leslie,

I had cording after my axillary node dissection and lumpy. It ran from the armpit to my thumb. It looked like a cord/rope right under the skin and was very painful. I believe it went away after about a month and hasn't recurred. I never got full motion in my arm after the AND although I did all the wall walking and other exercises suggested.

Hopefully, yours will be gone shortly.

Catherine · 09-16-2007, 09:56 PM

Leslie,

It has been one year since my bilateral mast. I still have a little "cording."
This is what my PT and my personal massage therapist call it. I do not think that I have the severity that you have. I just have to be vigilant in my stretching. I do yard work and golf a little and walk a lot. I kind of feel like it will always be with me. Luckily I do not need my arms for working on my computer at work. And luckily I work part time.

So sorry that you have uninformed and defensive medical people. Keep up the good work in getting the informed ones to help you. Wish you could go to my PT she is so informed. BC patients are her speciality.

All the best, Catherine

Chelee · 09-16-2007, 10:51 PM

Leslie, After my MRM I had some cording...the only difference is at the time I had NO clue what it was? I even showed it to my onc, surgeon and anyone else that would look at it. They all told me they didn't know what it was? I thought since that cording was so hard it was clots in places. Those cords were so hard! No one would believe how many people I showed it too. Even the techs that injected me with contrast at my scans. They would look for a vein and I would say "here's one". They would see that hard cord under my skin and say they never saw such a thing. It wasn't until 5 or 6 months later on this board someone mentioned it.

Also when I had this cording which was under my arm and in my "ditch" I had serious shoulder pain. I remember telling my onc that I felt like my shoulder was out of its socket. I lost lots of range of motion. I asked if it was from my MRM and if it would get better in time? She said it *wasn't* from that and referred me to a orthopedic doctor. (I DIDN'T go...I knew it had to be related to the MRM in some way.) In time I just kept using my arm as much as possible without over doing it...and the cording all went away by itself...and the shoulder is now fine and back to normal. I think it was about4 months or more. But it did go away. As far as exercises my NP told me to get close to the wall with your toes almost touching it and walk your fingers/hand up the wall slowly until its over your head. You can do it several times a day. When you walk it up the wall you'll know when to stop. Your shoulder will let you know.

That did help my shoulder. Take it slow and don't over do it. And of course you can ask your onc or surgeon about this first. I hope things get better for you soon.

I know pretty much how you feel because no one told me what exercises to do when I left the hospital. Or what I should or shouldn't be doing. I was left in the dark. I had to call down there and push to find out anything. Thankfully for one NP she was the ONLY one that helped me. I'm also use to being dismissed when I bring anything up. I've been told SEVERAL times to LIMIT my access to the internet. I even found that written in my onc's "progress notes" that she told me to stop it. (Can you believe that!) If it wasn't for the NET and this board I wouldn't know a thing. Who are they to tell me to stay off the internet and the boards. They are just afraid I will find out what they AREN'T doing for me. So I feel for you. Keep being pro-active...continue doing your homework...ignore them. You know what sites are reputable. Hang in there.

Chelee

PinkGirl · 09-17-2007, 09:36 AM

Hi Faux

I also had cording, but it was definitely not as severe as your description. It felt like a cord running from my armpit down the inside of my arm to just below the elbow crease. The treatment for it was exactly the same as treatment for lymphedema. I had a tightness in my chest across the mast. incision but it felt more like very tight duct tape. I did the exercises and wore an elastic arm stocking and glove and it eventually got to almost 100%. It took about 9 months. Again, your description sounds much more extreme.
Good luck with this.

StephN · 09-17-2007, 11:49 AM

Dear Leslie -
Variations of this problem can occur at almost any stage of diagnosis AND treatment for breast cancer.

My AWS occurred after my excisional biopsy and lumpectomy with sentinal node biopsy. This was without any further node dissection - just a third biopsy as they kept missing my small (but very lethal) tumor. Somehow that brachyial nerve got bothered by that surgery, which was also on the right and affecting my right arm.

So when I went for my second opinion I LOVED the med onc and agreed to interview the surgeon he worked most with. That man was so careless when he examined my AWS area. When I asked him what he would do about it (as it was shown that my sentinal node was cancerous and the axilla would need to be done), he said, "Oh, just snip it!"

I said "thank you very much, I will get back to you if I need your services" and never saw him again. When going back to my original surgeon (a thoracic specialist) he said he would take the extra ten minutes to free up that nerve which runs through the axillary nodes area. That way I would have a still intact nerve, just badly bruised.

After performing the exercises for 3 months I had my full range of motion back. A TIP: I found that doing the exercises in the shower under very warm running water helped me progress faster. I also massaged in some cream for sore joints and tendons to help the area around the healing nerve.

Hope this helps. The main thing is that I wanted to have feeling at the back side of my arm and if that nerve had been severed it would never have been normal again. I know several women who say they don't have feeling at the back of their arm as the nerves were cut in the surgery.

fauxgypsy · 09-17-2007, 07:09 PM

I spoke with my surgeon today and he agreed that it was not a nerve, that he had been wrong. It is axillary web syndrome but the treatment is still the same. Gentle stretching. It has been a long day. The clinic or the hospital had messed up scheduling again today so I had to wait hours. And then the lymphedema specialist left before I could get there after saying she would wait since it was not my fault that I was late. We had a "come to Jesus" meeting ( as my sister-in-law in Texas would say) before I left my oncologist's office. Last week they had forgotten to schedule my treatment. I don't know what happened this week. I am tired of them forgetting to return phone calls, schedule tests, etc. I wasn't ugly but I had run out of patience. I don't think it will happen again. I told them that I loved my oncologist but they needed serious help in the office. Nobody seems to have a clear cut job. They need someone to be in charge and not have everyone doing everything. I just keep telling myself that it will get better.

I am numb behind my underarm but it feels as if sensation is coming back. I am more concerned about mobility. The cording is very obvious at this time and the physical therapy had mede it worse. I think she was pushing me too agressively. I am going to continue the exercises but with caution.

Chelee, I am through with being dismissed. I made that clear to my surgeon today. I told him that I understood that they could not be experts in everything but that I could be an expert on me. I hope it was clear to my oncologist's staff as well. I asked them just how they could have forgotten to schedule my treatments, that this was my life. I have decided that if they are uncomfortable with me finding information on my own then they will just have to get over it or I will keep looking until I find a doctor who understands that I am going to be proactive. I pushed them about how long it is going to be before they do some tests to find out why I am losing potassium, I questioned them about the blood in my stool which may or may not be caused the potassium I am having to take. I am careful about where I get my information but they also need to realize that we are the ones getting these treatments and surgeries and we know better about what we feel and about our symptoms and side effects than they do sometimes. Much of what we discuss here may be anecdotal, and not always backed up a double blind study but if a large percentage of us are having the same problems then there is a good possibility that they are real. Sometimes if they would just listen to what we bring them from the internet they might learn something. My oncologist doesn't specialize in breast cancer, there is no way he can keep up with the latest breakthroughs in every possible type of cancer there is. There might be something they don't know. My surgeon actually thanked me for bring him some papers today.

Keep the faith,

Leslie

SoCalGal · 09-17-2007, 09:21 PM

Leslie,
PIlates on the Reformer - I'm telling you - it changed my life. I never had an official diagnosis but in FloriLAND that is not necessary. Now I realize that I had cording, (and wrapping and tightness and chronic and constant pain). I had long lines sticking out, running down and wrapping around. Although I only have and only ever HAD 2 breasts, I had 3 flap procedures due to skin spread after my first mastectomy (actually bi-laterals). I then had a dorsi flap. Tunneled, not free flap so I have parts from my back around my side and moved to the front. Oh, I am laughing as I type, but it wasn't funny then. And the ending of this story is I recovered through exercise.

Try to let go of what the doctor said you would be able to do and when it would occur. That's not the case, so plan for help for now when you work.

Second, find a physical therapist and start out SLOWLY. If you stick with the stretches and gradually add motion and weight, you will fully recover.

I'm sorry for your struggles. I literally could not lift a bag of groceries from the car. Now I can bring in the bottled water. It takes time. --Flori

fauxgypsy · 09-18-2007, 06:03 PM

I am sorry, Flori, you make me laugh. I have this vision of you with breasts all the way around. What is a Reformer. I have an understanding of Pilates but not with a reformer. I had a physical therapist and she made it worse. I am going to talk with her again about therapy but only if she is willing to learn more about this AWS. The rehab place is supposed to be sending one of her associates to learn about lymphedema in Noveember but no one in this area seems to know anything about therapy after a mastectomy.
How are you doing on the carboplatin (or carboflatten as my husband called it) and tykerb? And what is a skin lympatic rash?

Leslie

SoCalGal · 09-18-2007, 06:14 PM

It's a flat bed machine. Try googling Joseph Pilates Method or similar and you can see. It's low impact exercise...originally created for injured ballet dancers. Good for the long lean look. An inexperienced PT can make things much worse - you need to be quite careful. It just has not been that long for your recovery. Things will get better - of that I am sure. I'm glad you are laughing - even at my expense. xo Flori

dchips1 · 09-18-2007, 09:54 PM

I had the "cording"come up after my mastectomy with lymph node disection. From my wrist all the way across the shoulder to surgery site. It came back after my onset of lymphadema. We also did u/s doppler of the arteries/veins to make sure no DVT's or clots.

The PT I saw is trained in the Vodder methods for manual lymph node drainage and was familiar with this. MY surgeon , love him but did not have a clue! I found a one liner in Dr Loves 2nd edition book.

There is also instances after plastic surgery(usually cosmetic) to the chest/armpit/breasts in non cancer patients that my PT knew about.
She suggested gentle perpendicular massage, stretching just till pain just starts, hold for 5 seconds, the relax. Warm shower helps with this. Lying in bed flat and extending arm in all directions.

Mine resolved in about 6 weeks each time. Good Luck Darita

tousled1 · 09-19-2007, 08:24 AM

I have AWS with lymphedema in my right arm. I had gone to a licensed physical therapist who was certified for treating lymphedema patients. It is very important if you see a PT that they be specially trained to treat lymphedema patients. I no longer go to PT but did purchase a DVD specifically made for lymphedema patients. It is called "The Lebed Method Focus on Healing." You can purchase it online at www.lebedmethod.com. It is also good for people suffering from fibromyalgia.

Joanne S · 09-20-2007, 01:36 AM

Thanks Kate,
I'm going to order the DVD!
Sounds like it is exactly what I need.

tousled1 · 09-20-2007, 10:16 PM

Joanne,

I found that it really helps. Also, it just doesn't work your upper body but your entire body. I must admit that the music is a bit lame but other than that you'll get a good work out and you can do it sitting or standing.