Post Mastectomy Pain Syndrome (PMPS)
Comments
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1Openheart,
I also have nerve damage. Much going on in pec muscles and where lymph nodes dissected. And actually in the past month, nerve pain is going down my right arm down to my hand. I keep looking to see if any of the long-piano like cords were coming back. Most went from axilla to elbow, but did have one that went to hand, that the PT manipulated and snapped.
As part of the many, many hours of PT I went through, I was given special "nerve glider" exercises that I do as well as the stretching.
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PinkHeart....I've also spent hours on the table in PT over many years for other issues, but they have helped my immensely since my bc diagnosis. They helped me prepare my body, mind and heart for surgery and have been there for me every step of the way. The pain in my arm feels like how the arm feels when doing "telescoping" exercises....that tight, pulling feeling from armpit into palm. Do you know what I mean? My myofascial release PT folks do not want to snap my Mondor's cording in my trunk.
I'm worried that this is not improving and in fact, i think it is getting worse. My PS does not seem to want to or know how to address my pain. I am seeing my BS next month. He is very compassionate and a wonderful doctor, so I'm curious to see what he has to offer me.
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OPenheart,
I hope your cording will get resolved. What does your PT say? I never knew there were other kinds of cording than axilla until my PT told me that all kinds of surgery can cause cording/banding.
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Mine is called Mondor's Cording. It is usually under the breast, along the side of the trunk. Mine goes from under my breast, over the ribs and into my abdomen. From what I can find online, it is a clotting in the superficial veins caused by trauma to the breast. My docs and Pt all say it will go away eventually and to just take anti inflammatories, aspirin (for clotting) and apply heat when I want to.
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Pinkheart: you are certainly moving forward aggressively - something that many of us wish we'd done much earlier. The axillary cording I live with loosens up with stretching and yoga, and yet becomes a tight rubber band within days; frustrating, but manageable.
A friend of mine, newly diagnosed, has an anesthesiologist who is also recommending an epidural (upper) in addition to the regular anesthesia meds during her BLM - possibly hoping to avoid some of the maladies we deal with. He also mentioned botox. Some of this has already been discussed on previous pages, so I won't attempt to make this into another trail....
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Hi - glad I found this thread! I am 2 years out from my MX, and hadn't been having much pain or tightness. Just the last few weeks I have felt a tugging in my armpit, kind of like a line between my armpit and my chest way, directly behind where my pseudo-nipple is. My BS says it is probably scar tissue. I thought it was really weird to have this start up so long after surgery, but in reading some of your stories I guess this can happen?
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lovetosail, have you considered "cording"? It can appear (and reappear) at any point, though it's usually shortly after surgery. Still, worth looking into:
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htmHope you get help and real answers soon!
Binney0 -
lovetosail- I have a tugging from nipple to armpit, too. I feel it when I move my left arm a certain way and it feels like it's pulling the implant. I didn't have the symptoms of cording but I had it looked at by 2 different PS's who both said it was scar tissue that had formed. This was also confirmed by a physical therapist. She said it can be broken down by manual manipulation and the use of ultrasound. (I couldn't do either at the time because of recent fat grafting.) I'm starting up my PT, again, and hope to have this resolved. Good luck!
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Thanks for your replies Kate & Binney! I'll check out the cording link.
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Anyone else have excessive pain 8 weeks out from a lumpectomy/SNB? I have sharp burning pain that radiates out into my armpit shoulder neck and around my back. The worst pain is in the nipple and radiating back form the nipple. I've seen a pain doc and my options are either not working or not very attractive. I should be starting radiation like right now, but I can't imagine doing it with this kind of pain, it is sure to only make it worse. I almost just want to get the MX, but sounds like I could end up with even worse pain. I feel like I'll never be able to do so many things again, like run, or be intimate, yikes I can barely even wash the thing! I had no pain at all at first, then it started to hurt and got worse, and now it's been a steady pain level for 4 or 5 weeks, no improvement at all. Feeling desparate over here.
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Kate and lovetosail.... I have been using a hand held cold laser device on the sore area of my breast as well as upping my PT to twice a week. I have gone from having pain 24/7 to having as many as 3 days pain free. I still have pain some days and I can't seem to find any rhyrme or reason to when I hurt and when I don't. But, I at least have some hope that I may be completely pain free one day.
The laser is a Laser Touch One device that can be purchased on line. I am just using my PT's now to see if it I get enough relief to warrant purchasing one for home use.
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1openheart:
What are you using the laser touch for? Is it for nerve damage? Rads pain? Reconstruction pain?Can you tell me more about it? I have severe PMPS, am on meds, and get lidocaine iv infusions every 6-9 weeks and I still have pain left. I have not heard of the laser touch one.
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1openheart- That laser one touch sounds intriguing. I'll have to ask my PT about it. I just got a 2nd opinion and was confirmed I have LE in both arms and truncal so will have to make sure there's no issues there. So glad you are seeing some relief. Hope it continues!
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cinnamonsmile....I have what I think is both nerve pain and pain from adhesion's or scar tissue. Not really sure. But the pain is multi leveled if that makes sense. My skin gets very sensitive to touch right where my stereotactic biopsy was prior to mastectomy. Then I also seem to have deeper pain that happens when I move my arm or flex my pec. I had a direct to implant with alloderm reconstruction on the same day I had my UMX last June. I also have truncal cording, so far axillary and arm are fine. The cording did not happen until Nov. when I had a pocket revision. I have been hurting quite a bit for the past two days, but I went several days last week with no pain. I did up my PT visits to 2x week and my type of PT is all hands on body work releasing myofascial tissue. So, I'm sure that is helping as well. This little laser device is something that is approved for use at home anywhere on the body except for the eyes. Here is their website: http://www.lasertouchone.com
I have not purchased one because I think they are about $500. My PT is allowing me to just stop in and use it whenever I want. It only takes about 10 minutes per treatment. I just put on the gel (like ultrasound get) and turn on the laser. It has a timer and a little wheel to adjust the intensity. I just rub it over the area where I am hurting. Sometimes it makes my pec jump. But, it is possible that it could be breaking up scarring or adhesion's or doing something with the regenerating nerves. I'm willing to keep trying it as long as I am having some pain free days. And if I think the laser is what is bringing relief, I may purchase one to have at home. You can use it on all kinds of pain...back, knee, neck etc.... I've also started using it on my ribs where the cords are and they seem to be getting better as well. Again....could be just timing. It is WAY past time for them to be going away. Hope this helps.
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I had convinced myself I was ready for a BMX to avoid years of tests and fear of recurrence. Then I read this and think I'm nuts to consider it.
Is there any correlation between experience of the surgeon and likelihood of the patient to develop PMPS?
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marilyn- I'm sure it's a factor but there are so many different things that can cause ongoing pain and discomfort after MX. And there's no way of knowing who is going to have adverse reactions. I would definitely do your research with breast surgeons and plastic surgeons if you are going to have reconstruction. I would also research different types of reconstruction and the pros and cons for each. If you decide to move forward I would try to begin PT as soon as possible after surgery.
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Hi ladies, new to this thread.
I'm trying to determine the source of my ongoing pain. Bilat MX in January of 2010, and I've had three reconstruction surgeries since then. The most recent was in November. Now I'm in a terrible amount of pain, centered in my ribs right underneath my breasts. It's mostly a deep, dull ache, but sometimes feels like an intense burning. I was talking to another friend on here and she described it as wearing an iron bra, which is exactly how I feel. The pain has steadily been getting worse, and occupies my every thought.
I was on Neurontin for hot flashes, but it didn't help so I stopped it-now I'm wondering if I should ask my Onc about it again? I'm already on antidepressants for depression, and am not thrilled about having to mess with my combination.
I'm trying to figure out if it's possible LE, or now that I've read this thread, PMPS? I go see my Onc again in a couple of weeks, and I need to push him for help, but I'm not sure what to ask for. Any comments would be appreciated.
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burley- I would definitely ask for an LE evaluation just to rule it out. It will give you peace of mind but they will also educate you on LE prevention. I would also see if they can refer you to a physical therapist who specializes in mx patients. I see you're in Queen Creek. I'm in Mesa and have just found a wonderful LE therapist who can evaluate you. She is at Banner Desert. You do need a prescription for either the LE eval or the PT which you can get from your GP or your Onc. Was your recon TE's/implants? The pain could be coming from your pecs being stretched, too. The PT can show you some stretching exercises to keep those looser. Let me know if I can give you any other info or the number for the therapist. Feel free to PM me!
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Kate-I had immediate TE's, then implants. The implants were changed out twice, the most recent time in November.
I forgot to mention I started working with a personal trainer about two months ago, and the pain has gotten worse since then. I'm obviously doing chest exercises, as well as core exercises, both of which could aggravate LE if I have it (I think?)
So when I see my Onc in a couple of weeks, I should ask for a referral for LE therapy? Do I need to ask for a referral to a specific person?
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burley- One thing to be careful of when working with a trainer is I was told not to do anything that would build up the pec muscles. You want to stretch them and keep them loose but not work them too much. I was told this could displace the implants. (Not sure if this is true- just what I was told.) What worries me about your pain getting worse is that's what happened to me and that's when I found out it was LE. Working out would make it worse if it's LE. Not saying that's what you have! It probably isn't but I would get it checked out to make sure. If nothing else they'll do some baseline measurements in case there's a problem in the future. You don't need a referral for a specific person. My GP just wrote the script as "Pain- Lymphedema Evaluation" with so many sessions of physical therapy. (Whatever your insurance allows.) Unfortunately, I had a hard time finding a LE therapist at a place that took my insurance. The first one I went to was terrible and she ended up making things worse. I'm going to someone new now and she's wonderful. There's a woman on here who is our resident LE expert, Binney, and I found out she goes to the same person! Let me know if you want her info. Sorry, I know it's frustrating when you have pain after MX and trying to figure out what's causing it. There can be so many reasons and you kind of have to eliminate them one by one or see what works for you. Good luck! Let me know if I can help.
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burley - I have LE and have had pain issues ... pec exercises should be very mild, if done at all. Stop doing them. With what we've been through and how our pecs have been stretched .... if you have any lingering pain after lifting weights ... you need to stop doing this exercises.
Pec work is the one thing that I haven't been able to do. In the last couple of months, I tried again ... and I just can't do it ... it makes my LE flare horribly. I'm able to do biceps curls, tricep work, some shoulders but no pecs.
As Kate33 said ... get a referal from your PS or BS to a certified LE Occupational Therapist (OT) or Physical Therapist (PT). They are tough to find .... if at all possible ... go to the one that Kate mentioned ... I live in Illinois and if I lived within 200 miles .. I would so be there.
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Well dang, guess I can't do the chest workout anymore. I've had a sprained/possible broken wrist for two weeks now, so I haven't worked out at all anyway.
It's hard because with about 10 pounds of weight gain over the past year I don't know if my "thickening" around the middle is from that or possible LE. And the pain has gotten worse with the weight gain.
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Burley, don't wait until you see your onc in a couple of weeks--call tomorrow and ask for a referral. If it's lymphedema, the sooner you get help the easier it will be to get it under control and keep it that way. If Banner Desert is too far, there are a couple of well-qualified and experienced lymphedema therapists at the Desert Pain Institute on Baywood -- ask for Lynette or Aileen.
Lymphedema pain does not respond well to pain relievers, even those for nerve pain. The only thing that relieves that kind of pain is lymphedema therapy with a well-qualified lymphedema therapist.
Hoping you get real answers and quick relief!
Gentle hugs,
Binney0 -
I totally have the duct tape too! well said. I have tried heat and jacuzzi provides transient relief. I have had lymedema specialist work on my arm but that was before the pain. It is so frustrating because we go through so much to survive the chemo the radiation, the surgery and we are beset with this. It is not enough pain to stop me in my tracks but it hurts day and night and it limits what i can do, i can't close the hatchback on the car, cant shut the sunroof..yet it is unrelenting. A sneeze is so painful, never mind a cough, I dread having a cold..God Forbid. Anyremedies out there? I am reluctant to start Naprosyn but it is starting to invade my tempermant.
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I have read and reread all the comments and am happy to know I am not the only one..That should not make me happy per se, but i was beginning to think I was imagining all this pain. I do beleive that the jacuzzi helps and wearing my sleeve has helped with the LE. We have moved a fair distance from my LE PT so I cannot go back to them but I may try to find one specialist locally to see if they can help. I like the idea of the lido patches fro walgreens or wherever. We used lido alot for intractable pain that was nerve root in origin ( i am a retired onc and critical care nurse..hair of the dog ). Anyway, I am not going to work out my pecs, but rather see if I can keep them loose. I will keep you all posted to see if it works. Good luck to us all! I think we may find remedies as a group rather than rely on the medical/surgical collegues at this point.
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Not sure if this has been posted before but I found this old article on upper extremity pain disorders in breast cancer. It's amazing how many possibilities exist for those of us with pain.
Radiculopathy
Leptomeningeal disease
Plexopathy
Neuropathy
Polyneuropathy
Mononeuropathy multiplex
Mononeuropathy
Median mononeuropathy (carpel tunnel syndrome)
Ulnar neuropathy
Radial neuropathy
Myopathy
Tendonitis
Rotator cuff
Bicipital
Adhesive capsulitis
Epicondylitis
de Quervain’s tenosynovitis
Postmastectomy syndrome
Intercostobrachial neuralgia
Axillary pain (postsurgical)
Edema
Postoperative swelling
Cording (thrombophlebitis)
Lymphedema
Deep venous thrombosis
Complex regional pain syndrome
Cellulitis
Arthritis
Metastases
http://www.med.nyu.edu/pmr/residency/resources/96-UE%20pain%20in%20breast%20CA.pdf
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I know for a fact that I have post mastectomy pain syndrome. However, I think that I have a very mild case of LE thrown in as well. My problem is that there are now certified LE therapists near me. The closest ones are 2.5-3.5 hours away.
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cinnamonsmiles- Having just been dx with LE I had no idea this was such a widespread problem. I can't believe how many women who post there is no LE therapists available or the clinics they did have were shut down. This seems so wrong! It seems like, if nothing else, every hospital should have someone on staff. Have you checked the site "Step Up, Speak Out"? They have a list of LE therapists or may be able to help you find some qualified. You may want to make the trek just to find out for sure if you have it. If you do, the sooner you treat it the better so it won't advance. Good luck.
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I posted this on another thread but thought those of you with PMPS might be interested in this, too-
I was watching a program where they talked about protecting nerves during surgery. I was surprised as I just assumed nerves had to be cut when making incisions. So I started researching and found about about a company, called AxoGen, Inc, that makes products that help protect, reconstruct and regenerate nerves. They have something called the AxoGuard Nerve Protector which can be used to protect nerve tissue, or to wrap a partially severed nerve, during surgery. It says it protects the nerves and "minimizes potential for soft issue attachments and nerve entrapment by physically isolating the nerve during the healing process" and reduces the risk of neuromas. Has anyone heard of their surgeon using this? It seems if it works as it promises it has the potential to at least prevent some of the issues we may be dealing with.0 -
I have checked the step up speak out website for certified LE therapists. That is how I know there are none within 2.5-3 hours from me. Driving that far is simply not possible for me, no way, now how.
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