Post Mastectomy Pain Syndrome (PMPS)
Comments
-
Hi, thanks for the response. I am thinking about having my implants removed, but will not have any other reconstruction done. I am 58 and really cannot go through that long recovery process. I have been through too much. I did not have chemo or radiation. If I have my implants removed, I will have to wear prosthesis or just go flat chested. I cannot believe that this is where my journey has taken me, but, I am suffering so with the pain and have been for 5 years. I have some very good days without pain, but lately (past month) it is every day.
Maggi
0 -
Maggie, I chose no reconstruction from the beginning because I just could not face more procedures, I had looked at the photos of results and was NOT impressed, and had read about how much discomfort is involved, along with some of the horror stories as well as the success stories. I talked with several women who had reconstruction and were quite pleased with it, but they were either prophylactic mastectomy for BRAC gene or very early stage I with no lymph node involvement. Women with later stage or larger tumors or lymph node involvement seemed to do not as well. So, I opted for NO RECONSTRUCTION at all.
Next, I found that going flat is very freeing. But I also found that prostheses could be very comforting as it provides some "feedback" to the chest to sort of relieve some of the burning pain and also protects the chest against all the huggers in the world (my church is filled with huggers). You may want to check out a couple of threads on going flat (I will try to post link here later) and some on finding a GOOD fitter for prostheses (there are some very good ones, some very bad ones!).
Maggie, 5 years is a long time to have pain. I had pain from rotator cuff problems for about 3 years, then felt good for about 6 months, then got hit with BC and have had pain since first chemo and surgery in Oct. 2010. I am very very very tired of pain, going to pain specialists, trying one drug after another that doesn't work and has lots of SEs, trying interventional pain specialists, yoga, acupuncture, meditation .... some days are not so bad and I am grateful for every one of those, try to remember them when I have a bad day. One thing is true: things always change.
0 -
Pinkheart,
Yes I have gone through 2 bouts of PT over the past 5 years, 30 sessions each. It did help a little, but not much. Maybe their technique was wrong. Explain the PT you received a little more, OK?
Maggi
0 -
I found yoga and a special Rx pain cream to be the best for that hot wire across the chest pain.
0 -
Maggi, my PT did myofascial release which helped greatly. I went in with pain level around 9/10, down to 5/10 after 8 weeks. I now have a massage therapist who is also certified in lymphedema therapy, and she can do the myofascial release, and communicates regularly with my PT. I also have stretching exercises that PT recommended, as well as strengthening exercises. This continues to help some if I actually do them!
Insurance will not cover PT after major improvement, and then if you get worse again, it won't be approved again until the next 6-12 months, depending on problem (at least, that's how mine works). Not like going to a doc who sees you, you get some better, they do a check a month or so later to make sure you continue to improve - that is one of the problems with PT, once you have been deemed improved, you no longer get follow-up or "tweaking" to make sure you continue to improve.
0 -
Hi Kriserts,
Thank you for all your information on your process! You had said that "Dr. Ahn isn't under a specific plan, but of course the insurance company pays for the surgery, if that makes sense. The only thing I had to pay for, besides the hospital deductible, is the Brava itself." Does that mean that Dr. Ahn doesn't balance bill for the surgeries and fat grafting, or make you pay the remainder of her charge that your insurance does not cover? (Meaning she accepts what the insurance pays her as her full payment, and does not require you to make up the difference out of pocket.) I have BCBS, and she is not a preferred doctor, but I do have coverage with other doctors.
0 -
LInda
My insurance-aetna works the same way. I wasted my PT sessions allready on PT's that don't do Myo...release. Sigh will just wait till next year. I found one in DC area-kinda sorta near me-that seems to do it. but they are out of network-and she is quoting like 150 hr. yikes.
Is it possible to learn to do the myofacial release on yourself?
0 -
Hi Kriserts,
Thank you for all your information on your process! You had said that "Dr. Ahn isn't under a specific plan, but of course the insurance company pays for the surgery, if that makes sense. The only thing I had to pay for, besides the hospital deductible, is the Brava itself." Does that mean that Dr. Ahn doesn't balance bill for the surgeries and fat grafting, or make you pay the remainder of her charge that your insurance does not cover? (Meaning she accepts what the insurance pays her as her full payment, and does not require you to make up the difference out of pocket.) I have BCBS, and she is not a preferred doctor, but I do have coverage with other doctors.
0 -
Fredntan, I started myofascial release with PT, but I now have a massage therapist who can do it. She is also certified in lymphedema therapy, charges 75 per hour, of course out of pocket, but less than PT or even acupuncture. Also I had the PT show me how to do it, bit it is difficult to do it on yourself, so she also showed DH how to do it, and that is also helpful.
0 -
Linda,
If I can find someone like that, thats only 75 hr.
did you see results after maybe a few sessions? I mean this isn't going to take like 20 sessions to get some relief. I'm not opposed to paying that much but can't do it a lot.0 -
fredntan, it took several sessions to feel better, but at the end of each session I could definitely feel results. It is a matter of doing the gentle stretches (not the deep tissue massage that we like after working our muscles out really hard) that helps loosen adhesions of the skin to the underlying fascia and muscle. There are several tissue planes, and if they all get scarred down, they don't glide over each other with movement, so the myofascial release requires that you hold down one section and gently stretch across the area in all directions and holding the pressure for at least 90 seconds, which is very hard to do on yourself. But I learned a modified way to do it which is at least a little beneficial. I don't know about you, but I think many of us have intimacy issues after BMX with all the pain and body image issues, so when my PT gently suggested this might be an opportunity for me to allow DH to touch me again, I was sort of surprised, but it helped with this also - an added benefit! I think any partner could learn the technique to help you out once you learn it. I don't know what massage therapy runs in your area, but you could call around to find one who does this technique and who works with cancer patients. You might check with Medically Certified Athletic Centers - we have one associated with the university hospital system and it includes all kinds of rehab for heart, lungs, transplants, kids, old fogies - includes water-based PT, massage, and lots of classes in yoga, tai chi, dance, step aerobics, some for all levels of fitness. Let me know how you do.
I saw interventional pain doc yesterday and am just kind of bummed all around today. She was talking about how they can keep me from having pain as my disease progresses - all of it very invasive, with a pain pump that would have to be tunneled under my skin and left in my abdominal wall - just another piece of hardware that would annoy the crap out of me as sensitive as I am to abnormal sensations. But it might be an option if/when I am near the last few weeks of life IF I need it..... for now, am just breathing and being with the pain, just as it is, just as I learned in mindfulness-based pain management techniques. Still hurts, but I am able to find beauty and joy in each day still yet, so I will keep on keepin' on for now. And we will try one more time with the nerve injection next week, hoping it works again for me.0 -
Maggie, I have sent you a private message.
0 -
Hello! I'd like to invite individuals with Post Breast Therapy Pain Syndrome (including: chronic chest wall pain, scar pain, arm pain, and/or neuropathy following breast surgery and/or radiation) to join my Facebook Post Breast Therapy Pain Syndrome support group: http://www.facebook.com/groups/265320350156856/
Here are some informational links regarding PBTPS:
http://www.cancerlynx.com/pbtpshandout.php
http://www2.nursingspectrum.com/articles/article.cfm?aid=176
http://news.bbc.co.uk/2/hi/health/7844435.stm
Thank you
: )0 -
Thanks Reesee,
Don't post too much but having dreadful chest pain at present and not getting anywhere with doctors.
0 -
Anyone have residual pain after exchange surgery? I am 5 weeks out and still feel like I am wearing a bra 3 sizes too small. If anyone has found relief, please let me know.
0 -
I am not much of a facebooker, but will look at the page. I have decided to have my silicone implants and most of the capsule, scar tissue taken out. My pain is just too much and I am done. i cannot wait! It is on May 14th and sure could use some private messages of hope during my recovery. I have been on breastfree.org and got some useful information. PMPS, after almost 5 years, has not gotten better. I really believe there are few effective treatments out there for us. yes, facial release is good, but it doesn't last, you have to keep on doing it at our own cost. My surgeon seems to feel this will work, but I run the risk of even more nerve damage. At this point, I have to do this. I visited a prosthetics store today. I have tried every treatment for PMPS (which are few), and they just have not worked for me. I applaud some of the women on this page for your bravery and honesty. I hope to hear from some of you soon.
Love,
Maggi
0 -
Great idea! Whether the docs are too busy to give BC gals all the facts and tips, or they are not aware of pertinent info, I have found the posts of BC warriors on this site to be a lot more communicative of things that I may encounter or am experiencing.
0 -
Hi Maggi, we ladies have to keep sharing the truth of what we are experiencing. Thanks for your honesty and determination in exploring options. Side topic, I am still shaking my head that the breast cancer that was found in my right breast when my BS scheduled me for a bilateral MRI with contrast, did NOT appear on any previous mammo OR on the ultrasound I had on the right breast after that MRI. If my BS had not had the smarts to schedule that MRI, I would have chosen a mastectomy on the left side only, and had a very unpleasant shock in a few months or years when the cancer on the right finally appeared on the mammogram.
0 -
Hi everyone, I had a BMX on 1-15-13 and realized recently that I have a pain condition going on. I too find that this PMPS is not on the radar so to speak. I am starting to reach out for help and support. Today I started on neurontin. Did you have to gradually ramp up? I took one today and my full dose is three per day. I need another one, should I take another now? It is 9 hrs since I took the first one. Thanks!
0 -
Wirdgirl. I saw a pt who did deep tissue work and myofascial release. It's been saving me.
Maggi. How are you doing?0 -
Well, I had my surgery on 5/14 and went home the same day. I have 2 drains in, but only for a week or less. It is still hard to tell if the total deconstruction (the BS called it bilateral capsulectomy) worked. He did say my capsules (which form under implants) were hard as rocks!
I have post surg. pain and swelling now but I am hopeful. I asked the surgeon to not stitch me up too tight, to leave some skin there. He also went around the breast area to break up some of the scar tissue (which he feels was causing some more pain). He was the only breast surgeon that believed I had pain and was willing to help me here in Pgh. I went to 5 total. If you decide to do more, you have to find a surgeon who does revisions, that specializes in our type of cases, and that is hard because all BS tell you that they do everything. If you advocate for yourself, some BS's will just not take your case (which is good), and others will speak your language, like mine did.
I hope this helps someone else so that they don't have to go through what I did.
Maggi
0 -
As a previous poster on the topic of post mastectomy pain, I wanted to jump on and say that things can get better. I had pain on my UMX side for months after both the UMX and the revision surgery 6 mos. later. Both times, the pain started about 8-10 weeks out from the surgery and was a multi level kind of pain...hard to explain. I had both surface...nerve type pain... whenever the skin was touched and I also had a deeper pain that pulled and ached whenever a moved my arm or flexed my pec. I would have some short periods of no or lesser pain, but for the most part, I hurt all the time.
I posted a while back about my success with using a hand held cold laser device on my breast. MY PT's office had one we used it whenever I had a appt. They even let me just drop by at any time and come use it on myself. I eventually purchased one to use at home. I have not needed it for months now and I cannot say for sure if it helped...but.... I seemed to get relief from it when I used it. My docs were all OK with me trying it and could not see any reason why it would harm my reconstruction.
With the help of my myofascial release PT and my acupuncturist, I have finally gotten to the point where I have very little breast pain....just some occasional quick jabbing pains into the area of the scar. But, I have developed a fair amount of neck and upper back (between shoulder blades) pain, but I find that it is controlled pretty well as long as I have a PT/acupuncture sessions once a week. I also try to practice yoga regularly. But, some days that is difficult. The tightness on the UMX side causes some pulling down the back of the arm when I sweep my arms up the side of my body. I think it may be time to get out the cold laser again and use it on my upper back.
But...for the most part, the constant breast discomfort is so much better and I hope that you ladies can find some relief as well. I cannot say enough about having the right kind of PT available. Both my surgeons will order as much as I feel that I need. The main issue is insurance coverage.
I hope you all can find some relief soon. Continued post surgery pain and lymphodemia risk needs to be addressed by the medical establishment and the amount of suffering occuring in the breast cancer/MX community needs to be talked about. There is more to this journey than just getting rid of the cancer cells!
0 -
Maggi: that is wonderful.
My point of view is that the breasts just aren't worth. If I had known that the reconstruction was going to cause this much pain, no way would I have signed up for reconstruction. I just don't have the money for weekly accupuncture and PT, so if I can maintain a lower level of pain with stretching and occasional PT, the plastic can stay. And that's only because I don't want more surgery.
But if it cause me great discomfort, I will do what Maggi has done an remove this plastic stat. I wish I'd gone flat.
0 -
I have been researching updated materials re: PMPS. I think that it is, by now, pretty clear that the incidence of PMPS could be avoided if the breast surgeon avoids dissection of the intercostobrachial nerve during the mastectomy procedure. This could reduce the incidence of PMPS from 50% to 25%. The studies prove that this is a huge leap in improving the odds of the patient developing PMPS. This is an issue which should be discussed with the breast surgeon PRIOR to mastectomy.
Deborah
0 -
From another study.....
PATHOPHYSIOLOGY
Postmastectomy pain syndrome (PMPS) is caused by direct nerve injury (eg, severance, compression, ischemia, stretching, retraction) during the breast cancer operation or from subsequent formation of a traumatic neuroma or scar tissue [5,6,14,16-18]. Breast cancer operations can damage the brachial plexus, intercostobrachial, lateral cutaneous branch of the second intercostal, long thoracic, and medial and lateral pectoral nerves that innervate the breast, chest wall, and ipsilateral extremity (figure 1 and figure 2 and figure 3) [6,16]. In particular, surgical procedures in the upper outer quadrant of the breast and axilla, where major nerves traverse the operative field, are particularly vulnerable to nerve injury [17,19]. In addition, local radiation treatments and neurotoxic systemic therapy (eg, taxanes, platinum agents, vinca alkaloids) can also exacerbate PMPS [6-8,14,20,21].
0 -
Mine has been entirely related to muscles spasming due to stress of implants under pectoral muscle. With PT, the pain is much less.
0 -
Hi Gritgirl and others!
Well I did it. I am now flat chested and I believe that the surgery has helped, even jsut 3 days out. I have those nasty drains, but they'll be out soon. then I wil see what happens. I asked my BS, who believed me about my pain, to not sew me up too tight. he also tried to break up scar tissue around my breast area. I currently still feel the tightness in my chest area. If that continues then I will work on getting analogous fat grafting.
Hey, thanks Whippetmom for all of your research on PMPS. The problem is, BS don't believe in this as a risk, so they really won't discuss it much with patients. See, like you said, it is caused by surgical technique..so if the patient has PMPS after surgery, they have a good malpractice case. I tried but it was too late.
The best thing we can do is keep talking about it and encourage, like Whippetmom did, to ask women to talk to the doctor before your surgery. If they don't want to do this. or minimize this risk, find another surgeon. After 5 years of pain, it is worth it to wait, but I know how scared I was and just wanted the CA out of me.
We have to be our own advocates and educate ourselves. I was actually asked to join a study at the University of Pittsburgh that is researching why some women get PMPS and some women don't. As if, my personality or physical make-up causes poor surgical technique!!! Unbelievable.
0 -
Hi everyone! How do you know if the intercostal brachial nerve has been cut? What kind of tests have to be done? I went to a local pain mgmt group Friday and they suggested I go to the integrative wellness program at the hospital where I had my surgery. I am also going to reach out to a lymphedema specialist at St Barnabas in Livingston NJ and see if she can evaluate me. I want to know what I'm dealing with here. The neuron tin is helping and I'm on a low dose so I know I can take more if need be. Peace of mind! And with less pain I can figure how what to do to help myself.
0 -
wirdgirl118, that's what I'd like to know too. Going to my BS for two year follow up and having MRI before I go. Do you think they'd tell us if the intercostal brachial nerve was cut or damaged during the surgery? My dilemma now is that I WANT TO KNOW WHAT IS CAUSING THE PAIN, then I can search for a solution. I feel that my doctors are so vague when I ask them about the pain. Is there something they don't want us to know.
0 -
I think they don't want us to know how high the risk of nerve damage really is in this procedure. My drs have been so vague with me as well. I go to the pain clinic at U of Penn and I'm told by my pain mgt dr. that they see women with this type of pain all the time as a result of mastectomy. The Hershey Medical Center (100 miles from U of Penn) is where I had my surgery and they claim that I am the first that this has happened to!! Really??? Somebody is not telling the truth! I can't believe they can get away with this kind of stuff!!
Mary Lou
0
