Lymphedema risk following Rotator Cuff Surgery

voraciousreader

Had a SNB along with my lumpectomy last February.  I now have a resolving axillary web along with a nerve entrapment AND a rotator cuff tear in the shoulder.   I call it the trifecta. So far, I've declined a steriod injection.  Instead, my treatment has been an oral anti inflammatory and Voltaren Gel, along with physical therapy.  My physician has told me that if I don't improve in a month, I need to consider surgery but I worry about lymphedema.

I've only found this article on the web regarding risk of lymphedema after surgery:

http://mylifewithlymphedema.blogspot.com/2006/01/rotator-cuff-surgery-and-arm.html

I already had shoulder surgery on my other arm, as well as ulner nerve surgery on my elbow and reconstructive surgery on one of my fingers, so I'm really in no hurry to have more surgery.

Could anyone please tell me, honestly, how conservative I should be?  I'm in a lot of pain and think I'm heading towards surgery, but the thought of lymphedema certainly weighs heavily on my mind.

Thanks!

alex56

The rotator cuff issue just adds insult to injury, doesn't it?  I had aggressive lymph node removal during my mastectomey 11 months ago (left side).  This summer lymphedema raised its ugly head, but fortunately its rather mild.  About the same time, my right arm/shoulder started to hurt like the devil.  Back into the MRI machine I go, and yes indeed, there it is, a partially torn rotator cuff.  My ortho shot it with cortisone and it was a miracle, pain free for almost 3 months!  Then the pain started creeping back.  He explained that he REALLY DID NOT want to operate on my right arm since my left was already compromised by LE and breast cancer surgery.  He shot it with cortisone again and referred me to physical therapy.  I was lucky in that my LE therapist is also a certified hand therapist.  He has me doing stretches and thera-band exercised that are ACTUALLY WORKING!  My arm is getting stronger and I can do the work-out essentially pain free.  It's been good for my LE arm too, I just have to wear my compression sleeve.  If I were you, I'd find a certified hand therapist in your area and have him/her help you navigate through the LE/rotator cuff mine field.  Lymphedema can develop at any time, whether you deal with the rotator cuff surgically or not.  If you catch it early and get proper treatment, it's fairly easy to manage on your own.  I hope to manage the rotator cuff situation with therapy as well in hopes of putting off surgical intervention indefinitely.   You should consider having the cortisone shot - it should help relieve the pain, at least temporarily, while you investigate alternate therapies.

voraciousreader

Alex56

Thank you for replying.  I hope you enjoy a FULL recovery without the need for surgery.  I have an excellent physical therapist, but I'm truly worried about further harming my arm.  I'm really in a rock and a hard place, because, until I had the breast surgery,  this was my good arm.  So now I have weakness in both arms and shoulders, as well as terrible pain.  Considering the number of lymph nodes that you had removed, I too, would try to do everything I could do to avoid surgery. Having had the surgery on the other arm, I just want you to know that it wasn't a piece of cake.  It took a very long time to regain motion and strength.  I will consider the steroid injection if the pain interferes with my therapy progress.  I'm glad it helped you and didn't complicate matters.  That is very reassuring.  Thank you again.

kira66715

Voraciousreader,

  I read Pat's blog--and what struck me was to get a lymphedema therapist involved. I know you don't have lymphedema, but perhaps you might want to consult a PT or OT who is a qualified lymphedema therapist to give you some preventive tips if you need the surgery.

I have lymphedema and I fractured my bad hand, and am in the rehab stage--what is the most helpful to me is that my OT is also trained in LE therapy, so she approaches my hand rehab with LE in mind.

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

Some times you have to do what's right for you medically and treating any post op swelling with lymphedema massage actually helps you recover faster.

Good luck with the decision.

Kira

Medigal

voracious:  Many years ago (before bc) I had an injury to my shoulder and suffered excruciating pain and told it was a rotator cuff injury.  Two doctors wanted to operate immediately but the last doctor told me something very important.  He said once they operated on that injury, from his experience, I would spend the rest of my life in pain from the scar tissue since that was a very delicate part of our anatomy.  He said my other choice was to do delicate exercises to strengthened it which he gave me and live with the pain which he felt would be less than what I would end up with after the operation.  I asked him how long would it take and he said three years or more!  I was flabergasted at the thought but what he said made sense to me.  He also said I would have to protect the shoulder and keep from lifting anything heavy with it.  It was my choice.

Well, what he said made sense to me and I decided to do what he suggested.  No surgery.  It took several years but one day I realized all the pain was gone unless I reaggravated it by heavy lifting etc.  It is something I have to live with.  Now that I was diagnosed with bc on the same right side as the injury I have to protect that same arm from Lymphedema.  It terrifies me to think how much risk and pain I might be in if I had had the operation and all that scar tissue.  I think the best thing for you to do is to make sure your doctors know about your bc and risk of Lymphedema so they will guide you in the right direction for your pain.  What was right for me may not be right for you so I am just sharing why I made the decision I did personally.   Please make your doctor informed of your lymphedema concern and let him/her guide you as to what is the best way to go for your particular problem.  Best of luck to you!

voraciousreader

Medigal - I am happy to hear that you had the tenacity to continue with physical therapy and take conservative steps to avoid surgery.  I am leaning towards following your course.  I have to say, though, my first shoulder surgery was uneventful, except that it took a very long time to regain strength and motion.  Thankfully, I am pain free, but the arm is still weak due to the three surgeries from my shoulder, arm and finger.  I do understand and appreciate what your doctor said about scar tissue.  That is a risk with ANY surgery that mustn't be taken lightly especially with a joint as tricky as the shoulder.  Unfortunately, there is one huge difference between you and me which might make me more of a candidate for surgery.  The shoulder that I am now having the problem with WAS my good arm.  So now I don't have the luxury of it being my "go to" arm. 

So my dilemma is -- do I tough it out with therapy and caution, but RISK further damage to both arms, or have the surgery and RISK lymphedema and the possibility of a long recouperation that may or may not be successful?

Kira - I'm very sorry to hear about your fracture.  Not good.  But I'm sure you know that.  I wish you a COMPLETE recovery.  I appreciate your help in navigating me through the issue of lymphedema.  I can only imagine how much you have had to learn since it's become an issue in your life.  I know from my own experience, over the last 15 years, of what it's like to have an arm that doesn't cooperate with the rest of your body.  Also, not good.  I'm dangerous in the kitchen.  Things go flying all around me.  That's why I'm very skiddish about having more surgery.  I have spoken with my arm and breast surgeons and  they are more optimistic about the small risk of lymphedema than I am.  But at the end of the day, it isn't either of them who has to live with the consequences of a less than successful result.

Ladies, thanks for your perspectives.  

Happy holidays to all of you.

KS1

Hi Medigal -- My situation was a quite different than yours.  I had mild LE in one arm and to quote my pain doc a "fakakta" axilla (ALND dissection, multiple surgeries, brachial plexus neuropathy, granuloma, cellulitis, axillary radiation), and needed a rotator cuff repair in the other arm.  My BS, who takes everything in stride, was very glad that the rotator cuff surgery was going to be on the other arm. My BS and orthopedist conferred before the surgery.  I had my repair done arthroscopically at a hospital that only does orthopedics by an orthopedist who only does shoulders and elbows.  Recuperation was easy and straightforward, and I am really glad I finally agreed to have the RC repaired. Within 2 months I had greater ROM and strength than I had had for decades (when I first injured my shoulder).  Good luck, and tell us what happens..

voraciousreader

Just want to update everyone. Today I finally scheduled rotator cuff surgery on the arm where I had two lymph nodes removed. The breast surgeon told me to try conservative treatment first. But if I needed the surgery then I should be okay. It isn't his arm!



I had PT with a terrific therapist. I had two cortisone shots and oral steroids. The only thing that improved was the cording. What is now worse... Is my other arm that I previously had surgery on. It starting hurting when I had to depend on it because of the pain in my other arm. I am such a mess now with both shoulders. I am also pissed that I need more surgery and did I tell you that I am worried about the recuperation?

tennisplyr

I had a lumpectomy 12 years ago (stage 1 BC) and have not developed lymphadema and have remained healthy - praise God. I had 12 lymph nodes removed. On April 12,2011 I had rotator cuff surgery. Funny, but I searched for articles on the Internet as you did, but did not find this board until now, post-surgery, when I'm trying to search for anyone who experienced what I just experienced: I moved my arm in my sleep and it hurt so bad it woke me up and I'm worried I re-tore it (yes, I had the sling on). 12 days out from surgery, I have not developed lymphadema, though I did have some normal swelling in my fingers. My BC surgeon was very helpful in my rotator cuff surgery decision...he said if you need it, you have to do it and not doing it and developing frozen shoulder could be just as bad for developing lymphadema. So have you had the surgery yet? The recovery is long and tedious, but I had no pain after 5 days.

Binney4

Welcome, tennisplyr,

I have no rotator cuff experience to share with you, but wanted to bump this to the top for those who have had this surgery to respond. Hoping you're doing much better this morning, and looking forward with you to a "no-swell" and pain-free recovery. Please keep us posted.

Real gentle hugs!
Binney 

voraciousreader

I posted last night on another thread that I am scheduled for surgery for this Wednesday,April 27. I was awake for three hours last night in awful pain. I am beginning to get cold feet to go with the frozen shoulder!!! This will be my second shoulder surgery and fourth orthopedic arm surgery, so I know it's not going to be a picnic.



Tennisplayer... Thanks for finding me. I am so happy to hear you are doing well. It really makes me feel better knowing you are doing well. I wish you well.

Binney4

Hang in there, Voracious! It'll be good!! Count-down time, so just know we're all here with you and rooting for smooth sailing and a great recovery. Keep us posted, please.

Gentle hugs,
Binney

voraciousreader

Thank you Binney!

Binney4

Thinking of you, voracious! Sleep well tonight, hugs and prayers for tomorrow!

Be well,
Binney

BeckySharp

Voracious--If all of our thoughts are with you tomorrow it will go well.  Be calm and confident!  Becky

voraciousreader

Thanks for the warm wishes.  Slept in my bed last night and for the first time in close to a year, while I woke up several times, I no longer have the excruiating pain that would leave me in shaking pain and exhaustion in the morning.  A miracle.  I'll post more as I recover.  Right now, I just pray for an uneventful recovery.  The doctor said there was a lot of scar tissue from the frozen shoulder and a bone spur causing the rotator cuff tear.  None of the damage was going to improve on its own.  He also said, he won't give my other shoulder another cortisone shot, just yet.  I have inflammation and bursitis in that shoulder in the AC joint.  He thinks it will get better once my other arm improves.  We'll see....to be continued.

My thoughts and prayers to all my sisters on the lymphadema thread!

BeckySharp

Hooray, I am so happy it is going well so far.  Keep healing.  Becky

Anonymous

Congrats on your successful surgery and release from living with pain! Woohoo! Wishing you the best outcome with your other shoulder as you continue to heal.

Binney4

Great news, VoraciousReader! Thanks for checking in and letting us know. Rest up! Be well!
Binney

voraciousreader

Update...what a difference a few years makes when it comes to arm surgery.  This morning, the DH took out the catheter that was supplying localized pain control meds to the shoulder.  It was terrific at controlling the pain!  The last two surgeries that I had, when the localized block wore off, the pain was unbearable.  Uneventful recovery...so far.  Now it's on to aggressive PT, so the shoulder doesn't freeze up again.  I'm kicking myself today for not doing this surgery sooner.  A glutton for punishment as they say.

KS1

Vocarciousreader, I had arthroscopic rotator cuff surgery in my nonLE arm about a year and a half ago.  It was life-changing.  After 20 years of chronic discomfort punctuated every few months by painful dislocations, I now am pain-free with full range of motion and don't live in fear of dislocating my shoulder.  The one thing I would say is to follow the rehab protocol that your surgeon gives you.  I'm a more-is-better kind of gal and my surgeon warned me to not go too fast or I might damage the healing tissue, and the PT wouldn't give me the next set of exercises ahead of schedule. It was fantastic the way each week, my strength and ROM improved.  Would that it be as easy to "fix" LE