Lymph node dissection complication - is this normal?

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4/20/2012 12:24pm
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Replies: 16

Hi, my boyfriend has been complaining that he has limited mobility following a complete lymph node dissection (underarm).  He said that it feels like a guitar string (maybe a nerve or a ligament?) was reconnected too tightly.  When he raises his arm to a certain point, he experiences a lot of pain and can go no further.  We can even feel the "string" from the surface of his skin.  It's been just over a month since the surgery.  Just wondering if anyone else has experienced this.  Thanks.

Is he seeing a physical therapist?  Scar tissue can cause loss of range of motion (ROM).  Once the incision has healed, he should be working on ROM exercises.  I'd talk with his doctor about this issue soon and work through any issues with a physical therapist.

Best wishes,

Janner

Thank you for your response, Janner.  No, he is not seeing a physical therapist and no one has mentioned it to him.  I'll see if he will talk with his doctors about getting a referral.

Thanks again, Amanda

I had a dissection back in 1997.  From my experience, things will not completely stabilize for a year or more following the surgery - some musle and neuropathy issues will go away by then, but some will remain.  It depends on what was cut, and every operation is different.  Time and patience help.

Best wishes,

Harry

Too ugly to die!

Thank you, Harry.  I read your profile and happy to see that you were NED for so long following your dissection, and that things are looking good for you now.  Best wishes to you , too.  :)

I had the same surgery.  Yes, this is completely normal.  The surgeon should have warned him about this.  Once the incision is completely healed he can start mild stretching.  He should stop at the point where it begins to hurt, that means he has gone far enough.  My surgeon showed me how to do what he called a "wall crawl"  which was very effective.  He'll get full mobility back but it will take a while, full strength will be a little longer.  If he pushes it too fast he'll tare something.  Talk to his surgeon, if he can't show him the exercises then ask for a referral to a physical therapist.

Mary

Stage 3

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

Thank you so much, Mary.  That is very helpful!

Yes, my son (Jeff - you can read about him in his profile) had a radical neck dissection last January and had 42 lymph nodes removed.  When they pulled one of his drain tubes, he felt the same thing - like a snap and a severe tightness!  He had limited mobility in his right arm, a "winged" scapula, and some pain.  He was very lucky to have physical therapy all last summer and has no problems at all moving his arm now.  I would recommend talking to your doctor and asking about physical therapy.  It made a huge difference for Jeff.   Take care.

Bridgette (Jeff's Mom)

I definitely agree with all the comments about getting him to a physical therapist. I'm wondering if he may have a condition called "cording" or axillary web syndrome. I don't fully understand the condition but it responds to physical therapy.

"Axillary web syndrome is a common complication that occurs when there is trauma to the lymph nodes in the axilla--usually after surgery to remove lymph nodes. It has been studied and the cords/webs have been found to be thrombosed lymphatic vessels. The cording can be located just in the arm pit/axilla area, or it can spread down the arm, all the way to the thumb and onto the chest.

Axillary webs look like cords, and the symptoms are pain and tightness, and limitation of movement."

http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

Thank you, Linny!  This is most helpful.  I read your profile.  My bf also has seen Dr. Sharfman at Hopkins!  The vaccine trial is on hold for now, so my bf does not have that option, but he is looking at an alternative.  His story is actually very similar to yours so far.  Stage III, no primary, no melanoma found during his complete dissection.  Hoping that the good news continues for both of you,

Amanda

Small world! smiley Maybe we'll run into one another one day.

Yeah, their GVAX trial is on hold for some reason. But the MAGE vaccine trial is still going on. Apparently there will be some news coming out in June regarding the MAGE vaccine. I pray that it will be good because then there'll be something to offer for  those of us with Stage III resectable melanoma.

If Dr. Jacobs did his surgery then he should be seeing her on regular follow up visits. I would give her office a call regarding the discomfort he's feeling in his arm. If you live in the Baltimore area I'm sure she can provide you with a list of physical therapists who specialize in lymphedema massage.

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

Hi Linny,

I am attempting to get into the Hopkins GVAX trial. I was just down there this past week having the tests done to see if I am eligible (CT scan, MRI, blood, EKG). One of the Dr.'s involved in the trial spent a good amount of time informing me about my disease (IIIa), my options, and the trial. They had placed it on hold because one of the patients died. At this point they do not think it was related to the GVAX, but due to unrelated cardio-vascular issues, and so have resumed the trial.

I should find out on Monday if I am eligible for the trial. I hope so because there aren't very many trials available to IIIa, and this particular one appears to be a lot less toxic than the others.

- Paul.

I remember Dr. Scharfmann mentioning during one of my visits that they had some problem with the GVAX trial but I didn't want to press him for details. When I saw that the trial's information was not removed from their web site, I assumed they were able to resolve whatever problem they had.

I see Dr. Jacobs (surgeon) in October for a follow up and then go back in November for another MAGE vaccination. Have you met Joann, the trial nurse yet? She's a real sweetheart. Will you be going to Kimmel for your treatments?

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

I met with Susan Sartorius, and Dr. Evan Lipson. Susan is the trial nurse for GVAX. This is for the J1112 trial. But she was very nice too, patient and empathetic, especially to my financial situation since my insurance declined to pay trial-related costs.

If I am accepted I will be flying out there every month for the next few months to Kimmel, the Weinberg building in particular.

Take care - Paul.

OK. I've met only once with Dr. Lipson and that was when Dr. Scharfmann was not able to make one of my visits. I didn't realize they had TWO clinical trial nurses. My bad. I've probably seen Susan around and not known it. The complex you'll be going to is HUGE. It is possible to go by rail from BWI to Hopkins. There is plenty of parking at Hopkins but getting there can be aggravating with traffic.

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

I am having the EXACT same symptoms NOW.  I have my LND on 5/18 and just began to notice the "cording" a few days ago.  I am so afraid something is going to "snap" if I stretch too far. How is he doing now???

I had the same surgery about a month ago. I was told to expect this type of tightness and do spider climbs ( put my hand on the wall and crawl my fingers up the wall as far as I can) . I can now get my arm straight up. Don't worry, The "strings" will loosen up. I should also say that this surgery was a lot more painful than I expected, I had a hole under my armpit that went into my side about two inches, it has evened out quite a bit. If you are having swelling, check out lymphodema, it is fluid buildup from node removal. Also, you should wear a compression shirt. You can buy them at a sporting goods store. Buy one that fits real tight, this will help sweeze the lymph fluid out your tissue, reducing swelling, and pain. You can rub the swollen tissue, but do so very softly.
Bill