Post Mastectomy Pain Syndrome (PMPS)
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The intercostobrachial nerve is routinely cut in mastectomy. If you read in the surgical textbooks and look at the description of the procedure, they talk about trying to spare the long thoracic nerve, but kind of blow off the intercostobrachial. It is the little nerve that goes to the back of the arm, you notice a small triangle of loss of sensation there, so most surgeons feel like that is a small price to pay for getting rid of the cancer. What they cannot predict is whether that nerve will try to grow back in a way that is "abnormal", and it can grow back into a "neuroma" which then sends abnormal signals to the central nervous system (spine, brain) which then interpret them as pain. Some woman have not problem with this, but many of us have significant pain from it. I specifically requested that the BS try to NOT cut it during surgery, and she said she would try, but she cut it anyway. There are no tests to see if it has been cut - I would just assume it was. My pain doc has been able to see an area that MIGHT be a neuroma forming where that nerve MIGHT be - even with ultrasound, it is difficult to be absolutely certain. But I have had several injections of corticosteroid in that area which has calmed my pain down considerably, and if it comes back, they may do a more long-lasting injection with phenol - not something I look forward to, but will do it if that is the only way to keep my arm from hurting with every light touch from a sleeve. And now I have LE, so all the LE sleeves and garments are becoming just one more instrument of torture for me. *sigh*
Anyway, Mary Lou, the surgeons have been trained to do mastectomies in a specific way, and they just don't know the consequences because women aren't telling them - and I don't mean just tell them once, I mean tell them again and again and again, make more appointments with them, demand pain relief, be a constant reminder to them that they COULD make a difference in women's lives IF they choose to do so, at least in the future! They do procedures that are eons old, and just don't think about any other way to do them. Also, the rads onc folks refuse to acknowledge how much of a problem radiation damage can be to the brachial plexus - in the textbook there is ONE sentence about it: "brachial plexus neuropathy can be devastating." Devastating. "Devastating" doesn't even BEGIN to give the young doctor any idea as to what this means in a real human being's life!
Sorry for the rant tonight. Having a rough one myself. Peace and healing to you all.0 -
Wow I feel so bad it's good to rant. I'm getting so tired of feeling this way . I want to wear sexy shoes again I know that's not going to happen . Seems so silly to say that, I constantly feel like I have a very tight bra on when I don't even have one on . My feet are numb but yet I feel pain . I want to stop the arimidex,but I'm afraid why can't I just say to hell with it . I talk to myself and say nobody knows if these miracle drugs will really work. My walk reminds me of Herman munster(from the munsters)like I have 2 bricks at the end of my legs. You know enough about me I'm tired of complaining.
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Nancy62, I know what you mean. I am a different person post-BMX in a way I did not expect. My surgical incisions are healing well, why can't everything else??
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just wanted to ask you ladies with pmps if you have had pain injections? i am seriously considering them for the back issues i am having - I had the lat dorsi surgery (worst thing ever) and still have a lot of pain in my back area. I agree windgirl - I am so not the same person i was before this surgery
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There are many types of pain injections, in many different place and for many different types of conditions and we all react differently. What works for one, may not work for another. My pain doctors have told me that it is trial and error. They will try x treatment and see how it works. If it doesn't work, then they try something else.
I hope you find relief.
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The surgeon I had did mention the nerve damage. She said there are three nerves she needs to find before she does the surgery. However, she said there was one that she might injure.She seemed to brush over it quickly and didn't tell me what signs to look for. Turns out I DID have nerves cut.
I was VERY SPECIFIC after I figured out that she wasn't "hearing" my pain complaints as well as I thought she did. I wrote down exactly what I felt, where, how often, intensity, etc. I would read it right off to her.
She put me on gabapentin about a month after my BMX with lymph/sentinel node removal. It wasn't enough. Finally months later I got disgusted and saw a medical internist. First thing she said, was that I needed someone to help my pain. I got a referral to a pain clinic. I have seen three pain dr's there. They do very well at treating my pain. It has been something of a journey. I had my BMX on 1/11/11. I am still having such terrible pain that I can not function normally (even with all the meds and treatments I get).
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Hi Everyone,
I have read your recent posts and can sympathize with you. I have been fighting PMPS for 5 years and recently had my implants removed to see if that would help the pain.
Injections are good but without phenol in them, they never last. You can only have phenol injections twice per year. Other types of injections I am not aware of.
If you have a neuroma, sometimes they can remove it by surgery, after first trying the frequency injections. Not sure of the proper term.
I have a vast knowledge of what has helped me, but we are all different, yet all the same. These surgeons have just been given a license to cut whatever nerves they want, despite possibly disabling us for life. I applied for disability and got it without even hiring an attorney. the SSOffice was disgusted when they heard my story. Keep ranting baby, that helps too. I am starting a support group here in Pittsburgh at hopefully Gilda's Club or a church. we have to unite!!!
Love to all,
Maggi
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All I can add is that nerve pain is an odd thing. Even after YEARS, it can go away. Stem cell advances will probably help in the future as are new pain meds coming out. Hope. I know doctors say after a certain time, nerve pain won't go away. Yes it does. I am proof. And a friend who had a devastating accident was told he would never have feeling in his feet again, got that feeling back 3 years after...and improves every day. So, hope.
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I saw this on facebook and was curious if you or anyone else has heard of this dr? I live less than 2 hrs from Baltimore and decided to schedule a consult with Dr. Eric Williams on 6/27. I will be sure to post what I find out!
Hope this is a better day for you!
Mary Lou
http://www.baltimoreperipheralnervepain.com/
Intercostal Nerve (Chest) Pain
www.dellon.comNeuropathy Pain, Nerve Compression, Foot Drop, Peroneal Palsy, Pelvic Pain, Groin Pain, Intercostal Nerve Pain, Joint Pain, Knee, Shoulder, Ankle, Wrist, Elbow0 -
This concept looks interesting too - neural prolotherapy
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Maggie, I had stillette ganglion nerve block shots to the neck in 2011. They were very painful and only lasted 2-3 weeks. My pain doctors and I decided that I wasn't getting enough relief for the pain involved with the shot, not to mention it is dangerous.
In late summer or fall of 2011, I began to get bags of IV Lidocaine delivered to the vein. Now that works so much better. They literally take a bag of lidocaine and hook it to an IV. I am often tired and loopy that day, and in a fog for about 2-3 days.
For about a year now, my new pain dr. has been after me to try a spinal implant stimulator to block the pain sensations to get to the brain.
I will do the trial for three days at the end of June. after that i can finally have my lidocain. i didnt want to do it before the trial so i can have a more accurate pain relief.
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I wonder if I have pmps. I don't have sharp pain, but I do get very achy and I am so very tight all across my chest, under my arms, to the back part of my underarms and almost all the way to my elbow on the inside and outside of my arms. It bothers me from the moment I wake up until I go to sleep, and I don't sleep well at all because of it. It is worse in the morning, gets slightly better through the day, and then bad again when I am trying to get to sleep. At my most recent followup with my surgeon I brought it up, my bmx was Nov 2012. My surgeon, who I really do like, skirted over the issue as he has done in the past. He suggested passive stretches and is not a fan of pt. I just started going to a pt anyways that specializes in oncology rehabilation. It helps for a few hours after I see her and then it is right back. I do my stretches at least 2 times a day. I am miserable. I have a hard time pulling laundry put of the washer or dryer, folding clothes, loading and unloading the dishwasher, vacuuming, basically anything using my arms. It makes me very tired. I had to quit my job as a hairstylist. It does feel like an iron bra, but one that goes up tight under my arms. In fact, sometimes I have to check to see if my shirt is all bunched up and tight, but it is not! I couldn't do immediate reconstruction because of the stage of my cancer, but my docs say I could do it now if I lose some weight. I worry that things would get worse, but maybe it would gey better? I would do a diep, as long as my veins, are good. Also, my docs don't like to prescribe pain meds like percocet, only nsaids. The nsaids don't help, percoset does help some and I only took it at night. I don't know what to do, I am miserable and tired. I have neuropathy in my hands and feet. I dread housework and anything that involves my arms, which is about everything. So do you gals think this is pmps? Even if I don't have sharp pain? So sorry this was so long!! Oh, and what type of doctor do you think would help me best? My surgeon hasn't helped, my mo looks at me like I should be happy that I am alive when I complain of discomfort and then tells me I am doing so great. This IS NOT something positive thinking will help, how can I make them understand that?
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I had iron bra and that hot piece of wire feeling. I got a compounded cream from doctor...it had gabapin, ketamin & lidocaine. It has great. I could put it where it hurt and it worked..plus it was not a pill that made me sleepy. It has to be made at a compounding Rx. Ask your Dr. I can post the % of each if that will help.
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I have such a large area that has pain the entire front of my chest from the ribs up to the clavicle, the back of the upper arms to the elbow, the bottom of the rib cage to the top of the armpits, and around the back a little. There is no way a cream would work for me. I need something to work on the pain 24 hours a day. One of my first pain doctors said creams would not work for me but I sure appreciate your help. Hopefully it will help others.
I tried lidocaine patches, but that only made it worse when I tried to take the patch off. It was awful. I even tried the stuff the hospital uses to rub on to make it come off easier.
My pain gets so bad that I have a hard time wiping after the bathroom, changing shirts at bedtime (some times I just can't do it), I mean it is extremely painful. I got a really bad case of it.
Thanks for the tip, I am sure it will work for some one out there!! I am glad it helps you!!
Did they ever say the iron bra feeling might be scar tissue adhesions?? I had and still have them, though not as bad as summer and fall 2011 when I got OT for it.
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Cinnamonsmiles---I have some of what you are experiencing. I'm 3 months post exchange surgery and still have the tight iron bra feeling that goes across my chest and wraps around under my arm and partially across my back. I had a Uni MX with TE back in Dec and implant put in in March. No chemo or radiation (thank god) and have had this pain the whole time. It's definitely better since implant but still there. I went to Occupational Therapy once a week and worked very hard to get my ROM back to 100%. She's also given me a stretch band to some exercises with as well as shown me others to do. It helps as long as I do them 2 or 3 times a day. I alternate the different types of exercises throughout the day and try not to do too much as I find it's worse if I do more than 3 times. Some days I only do once. It's been strongly suggested that I try myofascial release therapy for possible scar adhesions. I've found a woman who does this and have an appt next Tues. This will be my first time. I'll let you know how that works for me. Neither my PS or BS are very involved in this and just keep telling me to stretch more. I've done lots of research and this is my next best step. The woman really feels that she can help.
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bak94---I have some of what you are experiencing. I'm 3 months post exchange surgery and still have the tight iron bra feeling that goes across my chest and wraps around under my arm and partially across my back. I had a Uni MX with TE back in Dec and implant put in in March. No chemo or radiation (thank god) and have had this pain the whole time. It's definitely better since implant but still there. I went to Occupational Therapy once a week and worked very hard to get my ROM back to 100%. I saw her for 3 months before my pain would ease for longer than a day or two. She's also given me a stretch band to some exercises with as well as shown me others to do. It helps as long as I do them a couple of times a day. I alternate the different types of exercises throughout the day and try not to do too much as I find it's worse if I do more than 3 times. Some days I only do once. It's been strongly suggested that I try myofascial release therapy for possible scar adhesions. I've found a woman who does this and have an appt next Tues. This will be my first time. I'll let you know how that works for me. Neither my PS or BS are very involved in this and just keep telling me to stretch more. I've done lots of research and this is my next best step. The woman really feels that she can help.
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Bak94, I had much the same experience, and am now much better because I am on neurontin. It is helping with the various pains and type of pain you mention. It has also helped my restless legs, something that has made relaxing or getting to sleep so hard for me since I was a child. You might want to ask for that. I am on 300 mg and it has improved the quality of my days and nights sine I started it in mid-May.
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Here is crream Rx 4% gaba 10% keta & 6% lido. I still use it some when I get that burning tight feeling
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Lovegolf, do you know what base the ingredients were put in? I had something similar for CIPN, but it was in Lidoderm base and took FOREVER to absorb!
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HI,
I started seeing a PT last week for myofacial release. I was just wondering -
How often I shoud have this?
How many times per week?
Does it hurt afterwards? If so, does it last long.
I am desperate but hesitant to have anyone touching me and moving things around in that area. Just could really use some input from all of you..
Maggi
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Hi MaggiPgh
Thanks for sharing everything y ou have gone through. I am having my implants removed on the 16th of this month because of pain after my BMX last year. I appreciate you sharing your experiences because now I know what to expect. I do expect to be flat but at least a little more pain free. Thanks for sharing.
By the way: I have had PT and it does not hurt if it is done by one of those lymphdema specialist. I don't have that. I have a frozen shoulder and cording. It feels wonderful. I just wish I culd afford it. Maybe after my surgery I can try PT again.
How long were your drains in? How long before you were able to drive? Thanks
Lezza0 -
And here I thought I was being a wimp all this time. I had surgery just over two weeks ago. Ended up at ER yesterday because of pain and swelling. I was doing semi-okay, and then not.
I'm going to tell my surgeon to stop screwing around and deal with this. Thank you ladies, you have given me courage
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MaggiPGH--i just posted about my gym adventures on exchange city. I had my 2nd massage last week. First one about 3 weeks ago. Didn't hurt at all and didn't make any difference in pain. Had my 2nd one with different lady at a gym's cancer group I joined and she had me almost levitating off the table a couple of times but it felt so great afterwards! She even left some bruising from where she worked the trigger points. I am going back on Wed. She said you could go every day if you wanted but once a week was plenty. Her myofascial release therapy was just what I needed.
And Leeza13, in my cancer class is a woman who had BMX 2 1/2 years ago followed by implants. 6 weeks ago she had the implants removed due to ongoing pain (iron bra, muscle spasms, etc) and she told me the other day that it made no difference at all in her pain. She decided to just go flat and pain free and now realizes that the implants weren't the problem. So she's decided to follow what I'm doing at the gym and see if it helps the pain. If so, she may get them put back in. My PS and BS and MO all said my excruciating pain afte UMX was not due to implants but due to my lack of ROM which took me many months to get back. Once I upped my work with the PT and got back ROM, my pain started to subside. It's not all gone and a PT I consulted with today said I have a few problem areas but she gave me stretches to do and said I should be mostly pain free by the end of the summer! So working on frozen shoulder and cording may be your best route at this point. Hope ya'll both get to that pain free point!!
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lala1 Still getting them out. They roll out when I lay down and it hurts when I sleep in a bed. I did not have any fills with my implants so they are hard double aa's that are very uncomfortable. That is besides the pain from the BMX and the frozen shoulder. I am asking my BS for PT as well for therapy for my shoulder after the surgery. I understand the benefits of PT and am glad it is working for you. I expect pain to still be there from the original BMX but I will be happy to be flat and free of these nasty implants. I will look into PT later for my shoulder.
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Lezza,
My drains were in for 2 weeks. Keep them in as long as possible because it cuts down on the fluid build up. they are awful, but we've been through worse, right? I didn't drive for a while due to being on pain meds. yes PT is great!!
I want to caution you though...since my removal of my implants and capsules, my pain has gotten worse..it kind of re-initiated my pmps..if DID NOT RELIEVE MY PAIN BUT MADE IT WORSE..now I have learned that any kind of messing around in that area will do more nerve damage and cause more scar tissue and adhesions. Just wanted you to know.
Maggi
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Hi Everyone,
I hope as many people read this as possible, because I really need your (all of you) support and help. I have been researching about PT and the use of connective tissue manipulation, cranio-sacral release, and myofacial release. What I would like to know from you is:
How many times per week did you have PT?
How long was each session?
Did the PT use one hand or both hands?
How long did she hold each release? 60, 90 seconds?
Did she move in just one way or use both hands in 2 directions?
Was it more effective when they did it or when you did it?
Where do you live?(my pT in Pgh. is trying to tell me that her way is the only way)
It just seems as if there are no standardized ways of doing these techniques.
This will help me so very much. i have been being tortured by this pmps but really believe that myofacial, etc. is the answer. I dont want to be on pain meds.
Hopefully,
Maggi
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Hi Lala,
I am as physically fit as anyone can be, working out almost 2 hrs 4-5 times per week. yet my iron bra continues. it is not caused by lack of range of motion or weakness, from my perspective. It is caused by nerve damage, scar tissue and adhesions in the chest wall. Any type of surgery in our chest makes it worse and I mean any type because they just damage more nerves and create more adhesions and scar tissue.
I didn't realize this and went ahead with my bilateral capsulectomy on 5/14/13. What a mistake..Maggi
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I know what you mean Maggi. I've been working out quite a bit and while it's helped tremendously, it hasn't solved all my pain. I really believe that most of what I still have is from scar tissue. I'm hoping myofascial massage will help with that. I had PT after my mx for about 3 months. I went once a week 12 times I believe. She only worked my mx side since that was what prescription was written for. I had hour to hour and half sessions and she would manipulate my shoulder for the first half then have me do stretches for the second half. She used both hands and would hold it for about 90 seconds. She was not very "pushy" so to speak about working my shoulder. She would quit if I even winced. My BS said I wasn't pushing myself hard enough so once I told the PT that, she pushed me alot harder and I got better faster. By the way, all my doctors and PT were in Augusta, GA. I do think there are different ways to do PT and you have to find the one that helps you. I went to another PT up here in VA where I am for the summer, mostly just for an evaluation, and she just gave me some stretches so everyone is different.
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I had my BMX with no reconstruction on 1/11/11. A couple months after I saw a physical therapist for pain and what not. She was useless. She only saw breast cancer patients about once every three months. She tried PT designed for other types...like strength training and strectching. She never touched my chest. I left after about a month. It was a waste of time and money.
It wasn't until around June 2011 that I began to see two different ladies for my scar tissue adhesions. They were so bad by then that it took until around October to be released. They both had differnent approaches. One was more hands on on the chest, the other wasn't as good as hands on the chest, but was great with using Yoga inspired stretching.
Part way through they started to do strength training with me. It became so painful (I have severe nerve damage from the BMX and bilateral node removal as well) that I talked to my pain doctor. I let him know that strength training was seriously putting my pain progress backwards. He asked if my arms were strong enough for what I needed to do and I said yes.So he ended the strength training.
I could not and can't work out like you ladies. I would be in so much pain. Just doing my every day houselhold activities puts me in pain. I have to becareful of how much and what types of activities I can do in a day. EX: If I do laundery today and hang it on the line, I know I can't sweep and mop the floor and clean the bathroom. If on a day I cleant the bathroom, I do very little because cleaning the tub is VERY hard on my arms...in fact I use my feet on the tub where I can!
Back in 2011 and maybe the beginning of 2012, I can't remember. I saw a WONDERFUL pyshcologist that deals with pain. That was just as helpful as the meds and treatments. I highly recommend finding a good one if you are living with chronic pain.
He taught me that pain patients have a pattern. We over do it when feeling good, then crash with pain and do very little. The trick is learning about your pain. How much can you do in one day? What activities are more pain causing than others? Learn how to schedule activites so you don't over do it on a day.Get out of that over do it today, crash the next and do very little. Find some middle ground.Take breaks between activities.
He also told me how to talk to my pain. Since my pain is nerve damage and their really is no reason for the pain (like an injury, etc), that is simply faulty nerve endings interpreting everything as pain and sending those signals to the brain, I acknowledge the pain, tell it that yes, I feel you, but you really aren't real pain.
I also have to find ways of modifying activities so that they don't produce as much pain. And I have to get help from my partner, Brian. Like if I do laundry and hang it on the line, he carries the laundry basket to the lines for me. If I have to carry it myself cuz he isn't around, I kick the laundry basket to the door with my feet, then put it on a lawn cart I bought myself and pull it. That way I am not using the right arm to carry the basket (the right arm is almost always worse that the left).
It sounds corny but it does help. Yes I feel the pain, but it is only nerve damage.
That is not to say that there are times when I feel like I am going to go crazy from the pain. I have terrible days where I cry,and feel like I am going insane. On those days, I don't even talk to the pain.
It is very hard to learn to live with chronic pain. But breast cancer patients don't have the market cornered on it. I remember in the early 90's my grandmother was in severe pain from rhumatiod arthritis. She went to pain doctors. Times have sure changed. She was in her 70s by then, and they made her go to treatment for presciption pain abuse.How totally absurd. I have never been treated like a drug addict for my pain, but there still are doctors out there that do. When I have to rattle of my medication list with new doctors, I can tell they look at me different. I'll get off my soap box, lol.
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Dear Cinnamonsmiles,
thanks for giving such a detailed account of what goes on with you. I am better in the morning, so that is when I exercise. it consists mostly of stretching, yoga, sitting on a recumbent bike and swimming. it is not vigorous but gentle and I swear by it. I'm disabled due to my pmps, so says Social Security. I don't do any housework, my husband does the laundry, cooking, shopping, and i have a cleaning lady. by about 5 pm I have to go to bed. I cannot go out in the evening, as I am in terrible pain.
See we aren't as different as we think. that's the whole point. i believe we all have the same pain..that is why it is a syndrome with specific signs and symptoms. I believe that if we don't help one another and tell anyone and everyone about what happened, pmps will continue to be the best kept secret amoung surgeons. We have to stick together. wishing all of you the best. Maggi
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