Post Mastectomy Pain Syndrome (PMPS)
Comments
-
Just a update, ultrasound found Two more, larger nodes on top of the original Node. I have a appointment on Tuesday with surgeon to discuss excisional biopsy and date. Radiologist could not tell if this is a recurrence or not
Fingers still crossed
0 -
too young:
Crossing fingers and toes with you.
Please let us know!
0 -
Thank you Dulcigirl, I forgot to cross my toes
Thank you for the good luck post
0 -
How did your appointment go?
0 -
I'm certain that your pain will subside in time. I agree about the quick release Tylenol. Can you have them ready next to your bed with a bottle of water? Another idea you may have considered is an adjustable bed. Let the automatic mechanism start to lift your upper body without you having to lift yourself up. Take the Tylenol and a deep breath, and ease on out of bed. I am a year and a half almost from surgery and my degree of pain and range of motion are improving. Just the other day, I got out of the truck at work, the door swung back at me and I pushed it open with my left arm, and the pain didn't zap me and make me want to fall to my knees. Woo hoo! My pain is like a guitar string "twanging" and I just have to wait a few moments, breathe, and not panic until the twanging settles down. Hope this helps. There is hope for pain relief. Give it time. Stay as calm as possible while you wait it out.
0 -
My appointment went well, he is concerned with the "hole" in my armpit as well as the enlarged nodes. After leaving him my armpit got infected and was on IV antibiotics for three days, they took me off and put me oral and infection came back instantly.
Surgeon moved my biopsy up to tomorrow!! They will do ultra sound of armpit and biopsy in both supraclavical and aux lymph nodes as he believes the hole in armpit may be a lymph node issue.
I won't have results till next Tuesday... finding it hard to concentrate on work......
Thank you for asking meant a lot
0 -
Oh TooYoung - the hardest part is the waiting. I'm so glad they at least moved your appointment up so you can get started waiting for the results. Hugs & prayers for tomorrow.
0 -
what is it about me that I'm like, hey, my pain shouldn't kick up again! I guess nerve pain is on a delay. I'll do stuff on the weekend and then be in pain Tuesday or Wednesday, just "randomly." Barometer seems to make a difference. I guess I'm just tired this week of doing pain management. At least what I'm taking for it is taking the edge off. Thanks for listening.
0 -
I am finding that I am getting more discomfort 2 wks. after my left mastectomy and immediate reconstruction.
The breast is more sensitive esp if I have been mobilising a lot. I found that folding a small silk scarf into my bra helps lots.
0 -
I have never done this before so please bare with me. 7 mos. ago had bilateral mastectomy with reconstruction .3 nodes removed left side . Had stage 1 invasive breast ca. left breast. IT was most horrible experience I ever had. They removed my morphine drip 12 hrs. after my surgery and sent me home one and a half days after my surgery with 4 drains as this was "Their Protocol" Surgeon and her pa walked out of room as I sat their crying. Next day I told her I was a human being Not a Protocol and not everyone has same pain tolerance . I Have switched surgeons. My plastic surgeon was amazing and he did an incredible job minus a few suture lines coming out of my incision. Needed no chemo or radiation, .>but few mos. after oncologist put me on tamoxifen. Around 3 mos.ago developed incredible pain left shoulder and axillary area,only relieved by narcotics. mri did show tendonitis. Started pt 2x/week acupuncture 2x/week ,saw orthopedic surgeon was injected with cortisone did absolutely nothing but kill me when injected. Next went to neurologist who put me on muscle relaxants which did nothing! This brings me to this forum I thought I was crazy! So now back to plastic surgeon who sent me to surgeon who finally diagnosed me with post mastectomy syndrome. He sent me back to neurologist who put me on Lyrica 2 days ago and ordered 2 mris for tue. We shall see. Also on and off of tamoxifen per oncologist because of blood clotting issues with tendonitis. I am so sorry to go on and on but nobody understands except my ca. support group. On a happier
note I am going to be a grandma for first time next week,and I want to be able to hold baby! Thank you all for listening and may your Lives be journies and not destinations.0 -
hi dorsdolls, welcome to the group and thanks for sharing your news!
0 -
dorsdalls, welcome, glad you found bco. i am sorry that you are hurting, but glad you googled and found bco. there is a wealth of information here, and some very wonderful women, and i am hoping that the lyrica helps you. i am almost two years from diagnosis, and only had lumpectomy, and i am sure that my docs think that i am a crazy wimpy baby, but i am still experiencing pain, and god awful itchiness, that only opoids AND neurontin help. it is better when i do something that takes ALL of my attention, but then the letrazole takes quite a bit of my initiative away. if i can force myself to just begin to do something, it is better. at first i would just try to go for short walks, or go to lunch with a friend, cause it would help to take my mind off of the pain, and i found that coffee for some reason, makes it better too. and reading here. and getting to know some of the women here has been the best. gift. EVER! so please just perservere, and come here and learn, and make friends, and i do hope it does get better for you.
0 -
Hi there,
I suffer from intercostal muscle pain after a left mastectomy 7 years ago. I was fine for the first couple of years but as the scar tissue tightened and my shoulder rounded over somewhat, the pain got worse. Now it's pretty bad all the time.
I wonder if anyone else has experienced this? I have recently come across an extremely useful site online which teaches you self-help techniques for various muscle-related pain conditions. It's run by a guy called Gary Crowley. I have recently asked him to put up an exercise for this kind of chest/rib pain but he says he only likes to put up exercises that he knows works and usually likes to practise on a live patient before he posts exercises. The problem is that I am in the UK and he is in San Diego so I can't exactly hop over easily and be his patient!
I wonder if there are any others living in his area who might like to see him? (I'm assuming this would be free - but I am happy to sponsor a visit to him as I'm pretty desperate for an effective exercise for this pain.) I have tried his other exercises on hip pain and also jaw (TMJ) pain and it works a treat (and I'm a real skeptic when it comes to 'therapies').
The link to his site is http://www.do-it-yourself-joint-pain-relief.com/
If you can help please contact Gary and/ or reply to me here.
Thanks so much
0 -
I have struggled with PMPS for 4 years. Tried everything, until the 11th pain specialist thought of rhizotomy. HUGE LIFE CHANGER! Run, don't walk to a pain specialist to see if this will work for you. I had the nerves at T3-T8 burned about 7 weeks ago. I am sleeping for the first time in 4 years!
Unfortunately, my nerves are growing back and will need to be burned again, but after a year or so, they might not grow back at all. Please don't hesitate to contact me for more info. It's minimally invasive, and was a miracle the first 6 weeks.
0 -
I came across this article a while back and bookmarked it to post here..
0 -
I am three years out of my first mastectomy and I thought I was doomed to intractable pain and no one could offer anything for me. I didn't think I could live with the pain. I am 1 year out of second mastectomy. SNB this time (first was 7 nodes taken out). Much easier. However, that said, I can do heavy work now with both arms!!! Once I couldn't bring a cup of coffee to my mouth without crying......now I am picking up lumber for fencing!!! There is always hope. Nerves take a lot of time to heal, sometime years. Yes, if I over work I get a bit of pain and sometimes itching.....but lots of people get pain after hard work...I think my finger joints are worse!! I like the injection idea Soccermom and if anyone going to go through breast surgery a very good idea to get.
0 -
Hi, I am new to this tread I am so glad it is here. I had my mx in March 2013. I then had rad in June. I had to deal with nerves pain but I thought it was normal and it could go away. Well it never ended and I am about to have a revision surgery, now that I found you ladies I have some info to bring with me to my new Ps in regards to my pain. I was blaming the lose implants and the rad but my pain even though it's worse on the rad muscle it's in both breast it's a pain that does not allows me to wear no bra or to sleep. I usually have to change position in bed several times through the night and use many pillows. It's defenetly nerve pain it feels as burning or tingling all around the upper poles, nipple, and some sharp pain around the scars. thanks for sharing all these links and info. It makes so much sense.
0 -
I originally had a sentinel node biopsy and a bilateral mastectomy. The sentinel node was positive but the others were not. I did 16 rounds of chemo and Herceptin. I went to Vanderbilt towards the end of chemo for a second opinion to make sure I was doing everything possible to prevent reoccurrence. They advised me to have the remainder of my lymph nodes removed. I asked about the risks involved and all I was told was numbness under the arm and Lymphodema. I was scared and had the surgery in October 2013 and I've been In chronic pain ever since. None of the nodes were positive. Big mistake on my part. I blew my happy ending. I haven't been able to go back to the job I've had for 27 years. I had no idea of the risks. Pain was never mentioned to me. The pain is in my arm, underarm, chest, shoulder and two fingers. I'm having a hard time getting pain relief. It's been 9 months and the pain seems to be getting worse. I'm seeing a pain management doctor but he has not been much help. Are there any specialists out there that deal with this kind of pain? Neurosurgeons, plastic surgeons that can repair the damage? I never imagined this could happen. Any suggestions would be greatly appreciated.
Thanks
0 -
DontdoALND, I love your name. I wanted to tell you that I get injections to numb my breast nerves and I cant remember what they are called. I have to get them every 3 months and they do help but I hate actually getting the injections. Its a nerve block. I have had terrible pain on my side and under my breast since my ALND and mastectomy. I do not have pain in my arm anymore it is mainly on my bra line. I get 3 levels done each time and it literally numbs the area. I used to have pain in my arm but I started doing lymphatic manual massage and tried to drain or move any lymph fluid to the center of my body and it did seem to help. Do you have any issues with lymphedema or swelling. If you do there is a great thread here about lymphedema with some super smart women who can tell you how to make it better. I just wanted to say that I hope you get relief soon. I have suffered for 2 years and know how miserable it is. Oh and Neurontin also was a help to me. Healing hugs0 -
Thanks for the reply melmcbee. I am sorry that you have pain too. I hope your pain goes away soon. It's so hard to deal with this especially when you were not warned. I've had 5 injections but the doctor has never hit the right spot. I don't have Lymphodema but I do have excruciating pain in the arm and chest. I've been told it's nerve damage. I am on neurontin and it helps a little but it's not enough. My ring and pinky finger are affected also. I just wish the surgeon had told me about the risks. After I healed up from my sentinel node biopsy and mastectomy I was pain free. I had all my range of motion back. I wish I never had the second surgery. They told me I really needed to have it and I was scared. It's so wrong for physicians to act like removing lymph nodes is like having a tooth pulled. It was so unnecessary. I'm trying to move forward but I can't seem to find a good doctor that can help me. I am considering neurostimulation. It would seem that there would be a doctor somewhere that could help.
@ melmcbee -Healing Hugs to you too. I can't imagine dealing with this for 2 years. You're a strong women.
Any other suggestions would be greatly appreciated.
0 -
Don'tDo - I'm sorry for all the pain you're suffering. Like you, I am ER/PR negative & HER2+. The first round of chemo after the recurrence to a lymph mode didn't totally shrink the tumor. I'd read everything up front and knew there could be some serious permanent problems with ALND, but I was glad to have that option. I wasn't glad to do further chemo, but at least there was another treatment option. My arm is numb & I have some mild LE. Now I've done RADS & luckily that doesn't appear to have messed up my implant too much. Yes I have problems & some pain, but I'm gradually building back some strength and hope that I can stay NED. Hope you'll find a solution to some of your pain issues. Did you try acupuncture? Hope some others weigh in with ideas.
0 -
MinusTwo,
I'm so sorry you had to deal with this again. That had to be hard. I'm glad you had treatment options and hope you stay NED also. I haven't tried acupuncture but would definitely consider it. I'll try anything.
The issues I have now were not expected by me. The doctors acted like the ALND was easy and necessary. It's been a nightmare for me. I had just finished 16 rounds of chemo (AC/TH) when they did this. When I asked the doctor what the risks were she didn't tell me anything about pain. She said you might have some numbness under your arm, we do this all the time. I had a clear PET/CT. All my nodes were clear. I should have done more research on my own. I guess I wasn't thinking right after all the chemo. They made me think this surgery was so necessary. My arm doesn't even feel like its part of me anymore. Because of all the nerve damage, it's very painful. Physicians should be required to be up front with us and tell us about all the risks. I think women should have to talk to a physical therapist that deals in Lymphodema before making a decision. I feel like my right to make an informed decision about my body was taken away from me. I also believe I didn't have a very skilled surgeon. I had scar tissue from the sentinel node biopsy and she should have known that would cause more problems. I have so much nerve damage and two fingers don't work right anymore and they also have pain. The surgeon is now in denial about causing any of this and not sympathetic al all. We recorded all our conversations with her because we knew we wouldn't remember everything. The risks were just not explained.
Sorry for the rant. I'm just in so much pain and it is increasing. I was beginning to see the light at the end of the tunnel after chemo and then they did this surgery. I haven't had any break since being diagnosed Jan 2013.
Are there any plastic surgeons that can help with the nerve damage? Any other suggestions would be greatly appreciated.
0 -
Don'tDo - I would suggest a consult with a neurologist. That would be your expert on nerves & nerve damage, & I found that very helpful. She did refer me for PT. There are several drugs that may help, although personally I'm trying to wait the full 2 years from the last chemo before I start adding drugs (and more side effects). A neurologist would be able to determine if you need to see a neuro-surgeon.
If you already have a lymphadema specialist, they will be able to help w/some of the protocol & pain from that issue.
Basically every doc I've seen said that things will continue to change for at least 2 years during healing from chemo, rads & surgery. From what I've been told, 70% of patients gradually get some better. Per my neurologist, we will NEVER be back where we started so "better" is relative. 30% end up with varying degrees of permanent CIPN (chemo induced peripheral neuropathy). And we know that LE can flare up even 20 years after treatment. Some have scar tissue that can be removed w/surgery. Some have implants removed. Good luck in your search.
0 -
I have been feeling pretty down lately because I also have post mastectomy pain but not to the degree that some of you have. I just have trouble staying asleep in my bed because of a burning sensation across my chest wall and pain in my right shoulder on the surgery side. Most nights I have to sleep part of the night in a recliner because of the discomfort brought about by lying down flat. I think we could get past all the misery and fear of our treatments if we could just get and remain pain-free. My MO suggested Effexor to help me deal with the pain but I just do not want to add another drug to the ones I am taking already. Several people have suggested accupuncture which is supposed to help mitigate pain. I hate this for all of us.
0 -
honeybair I totally agree, last night it was 3am and all I could do was think of the day I will be able to sleep through the night without thus burning in my chest. I listen to the silent night and hate everything that has happened to all of us. It just doesn't end. I am also waiting for my revision surgery now another end of August and I feel so down cuz i have been waiting for so long and to doctors is like oh well you can wait another month or two. No one but us bc survivor know what that is like.
0 -
For sure, Enerva, for sure.
0 -
I think I have this PMPS, 2.5 years out still tight across chest and under arm. Swimming makes me feel the best unfortunately the relief only last about 1 hour after swimming. I wonder if my muscle will ever stop feeling so tight.0 -
Sounds like there are so many of us suffering. I wish doctors would take this seriously and realize its important for us to be pain free. They need to come up with better surgical techniques and treatments.
I had already had a sentinel node biopsy and really didn't have much pain from that after it healed up. I had finished 16 rounds of chemo. I only went to Vanderbilt to see if they had any clinical trials and make sure I had done the right treatment. I have no idea why the doctor at Vanderbilt thought I should have the rest of my nodes removed. I had a clear pet/ct. She scared me into doing it and made me think it was necessary. The surgeon she referred me to didn't explain risks so I didn't get to make an informed decision. I am not only in chronic pain but I'm furious with the doctors that are so aggressive they don't think about what kind of pain we will be left with when they are done. There was no reason for me to be left like this. All the nodes were clear. None of us should be left in pain.
I am currently doing a spinal cord stimulator trial but that's not going well either. I should be on a beach somewhere and I would be if it weren't for my dumb decision to go to Vanderbilt.
0 -
dontdoalnd, I am piss too. I only had the sentinel nodes removed and one of mine was positive but I refused to get the rest out. Don't get me wrong I gave full authorization for my bs to take all the nodes at the time of my surgery but she didn't. She only took the sentinel nodes then waited 21 days for the pathology report then at that time realized chemo didn't work and that one of my nodes was now positive. I has biopsy before chemo and it was negative then 6 months of chemo and c went on my nodes so I then ask about other options and did decide on radiation. I was not willing to let them take my nodes and put me under once more. So I did rad. Well I am still glad about my decision, I now deal with burning and pain in my chest but at least not the arm so I am ok so far. Invest the sentinel nodes but I kept the others.
I keep wishing for a way we could somehow help other woman avoid all this nightmare. I agree with you doctors do scare us and it is us who live with our pain after they are done. I also like you wish they come up with better ways to help people withvthe sickness.
It does help to know we are not alone but another same time it really bothers us to know there are so many of us and the number increases every day.
Sending u all hugs.
0 -
Was directed by 2 women on BCO to this thread. It's been almost 2 years since second MX, over a year since reconstruction, exchange to TE's. Still have daily discomfort/pain. I recognize I may have contributed to this: in between and after last surgery, I down-sized my parents house to move them 250 miles closer to me. While I did take it easy (for me). there was still a lot reaching and picking up of light-weight items (mostly clothes). Even my PS agreed at the time, this was something I had to do for my parents as mom has Alzheimer's and dad can't care for her alone. Constant tightness across my chest, this is so annoying. Am glad this is a "syndrome" and not just in my head. Seems to be worse in the cooler weather (we really don't get "cold" weather where I live).
0
