Post Mastectomy Pain Syndrome (PMPS)
Comments
-
thank u all for u support& answers. I have an appt w/ my 2nd opinion on Tues. It appears taht most of u r having pain down the road after ur (B)MX. I am only 2 months out & i started to feel better & then all of a sudden i woke up in pain & its not getting any better, just worse. I have a lot of rippling on the rt side. i was starting to be able to get put of bed w/out as much pain, i wasnt waking up so swollen or feeling swollen. I have no idea if PT will help, but since some of u have done that, what do they do...do they massage or touch u? Now w/ Pain mang..been there for my neckk so i know abt the steroids & nerve blk...never helped my neck just made things worse. I am hoping this PM dr will better since they r requesting my records 1rst b4 they c me. I will b seeing my 2nd opinion on tues who did my breast reduction & i loved him. He moved to Baltimore otherwise i would of had him do my BMX.
if anyone here can explain how they do the nerve block & what medications if any helped w/ pain & swelling. MY PS will NOT give me anything this far out he said..what a bastard even though i am doing what he said to do.....i must say that when it comes to fixinmg my left implant i may not go back to himb/c of this & just travel to Baltimore...not sure yet..wish there were better PS where i live
0 -
Ladies
I am pleased to say the this past Sat. I was able to play golf and it did not hurt. After the 10/28/09 I have been pain free and the hot wire is gone!!! I feel like my life is back. Just wanted you to know it is possible.
0 -
Lovegolf, wonderful that you found a resolution. How did you choose a PS to do your surgery for the pain? I had gone for 3 opinions for reconstruction and could not imagine any of them being interested. I also have extra skin which has hardened and causes a different kind of pain on one side.
Shoshi, I had 30 hours of PT massage did not provide any relief. Stopped last week because I wondered if it was making things worse. They did teach me how and where to massage and do lymph drainage myself.
Went today for another opinion at new pain clinic. Ugh! She wanted me to take Pamelor at night telling me that it was timed release. Also, she had me convinced that the drug Topamax would give me nerve pain relief. Talked to the pharmacist about Pamelor and he told me it was not timed release. First bad feeling. Then had the Topomax script filled, googled it when I got home and found out 1 in 50 people get kidney stones from it. Since I already have a history of them, that is all I would need on top of PMPS! I had even told her of my problem with them, so scratch another Dr off the list.
0 -
may i ask a few questions...is anyone on this board having these "pains" just after a few minths or have most of u had ur MX done a while ago yr or more....?
anyone on here had the 1 step & not the TE?thx any help u can give me would be g8t..Rose, i a, praying for you.....have u ever gone on exchange city & see if anyone there has had any issues like u?LOVEGOLF: how did u become pain free?i live in the frederick MD area...if anyone else lives near me let me know..maybe u have some good drs.0 -
Shoshi, I did not have any reconstruction. PS would not do it because of my fibro/costochodritis. My pain has been with me since I got out of surgery 9/30/09. Never under control.
There is a great forum here on the alloderm 1 step reconstruction. I was on it prior to seeing the PS because it is very commonly done here in my area. I do remember a few people stating that they were in a lot of pain months out thinking it was only due to the reconstruction technique. Now I wonder. PMPS occurs to both those with and without reconstruction.
From my research, PMPS can occur immediately and/or start up months out. They are not doing much to figure it out.
Read a recent post somewhere that titanium clips are now being used during mastectomies to prevent very common seromas. That person is now pain free after she went back to surgery and had them removed. Many unanswered questions. I do have a call into my breast surgeon to find out if he used them. Procedural items like that do not appear on surgical reports.
0 -
I saw a PS who I have known for years who works with injury reconstruction. He does not do breast reconstrction. He went in and trimmed the extra skin, did lypo under my arms, along top ribs, and took out some area of nerve damaged tissue that was acting like a trigger point for so much of the pain. If you want any other details you can PM me
0 -
hipchick-Thanks for the encouragement
It's hard to remain optomistic when the doctors don't take it seriously. I saw my doc yesterday and was told the 'nerve pain' can last 2 years. I don't believe it's nerve pain-not all of it, because I have all different types of pain in various places. I also have the itching on my arm. I thought that was a good sign...thougt maybe my feeling was coming back in my arm. I printed info on PMPS, lymphedema, surgery induced metastasis and told my doctor to read it at her leisure. She probably tossed it in the trash after I left. 0 -
Good morning everyone! We finally got our electricity back after the latest storm. Still not much snow up here but 5 inches of rain in 24 hours and lots of trees down in wind gusts over 90 mph. Crazy.
Hipchick, Makingway, Shoshi, Rose and everyone struggling with PMPS - how are you feeling this weekend? I hope you're relaxing, drinking good coffee and feeling better. I know how LoveGolf is feeling! It's so good to hear a success story. I had a bad pain day Friday after doing housework Thursday. Just makes me furious...I really didn't overdo it...but on the positive side the pain subsided more quickly so by Saturday I was feeling better and able to participate in an all day training session at the local cancer center. Six months ago it would have taken 3 days to get back on my feet. Today I'm feeling hopeful again.
I'm still working with my PS to get pre-op education changed to include information about PMPS (and I told him that cording, lymphedema and seromsas need to be included as well. an imagined groan from him!).
But I'm not making much progress on the national front! I'm starting to understand why the research has been out there for 10 years but there is as huge disconnect between this research and doctors/patients. It's not easy to find a centralized place to communicate and effect change. This is not acceptable!!!
I went to Borders and skimmed Dr. Susan Love's Breast Book. She mentions that 50% of breast surgery patients are left with chronic pain, in a discussion of side effects. Why is this treated so casually? Why isn't this a headline on the national news?
If 50% of people who had carpel tunnel surgery were left with disabling pain and numbness of their arm/hand and they weren't told up front about the risk and then after the surgery their doctors denied their pain, told them they should be fine and sent them on their way...well, how long would that continue?
Any ideas on how to change this? Love, Fog
0 -
No, but I do appreciate your effort. You seem to be just the person that might get something done. It is totally unacceptable how we are not informed and then ignored. I felt like a naughty child for even bringing it up.
0 -
Thanks, Bettye.
Naughty child is exactly right. I felt the same way for 18 months...being told this is normal but knowing it wasn't (thank goodness my right side was normal so I knew my left was far from it). My PT even told my PS that I was "very in tune with my body". In other words - over sensitive!!! Those were dark days but now they are fueling my committment to make a change. I have an idea. I'm going to try this week - will keep you posted. Love, Fog
0 -
Fog....You need to contact Oprah! Or Dr. Oz! Get this on national television!!!
Dr. Oz...
0 -
Fogandroses - what a great idea, to get doctors to provide more education on this. Here's my story, perhaps it will help:
I was lying on the gurney in the room next to the operating room, waiting for my mastectomy. A young dr. bounces in & tells me he's my anesthetist and I'm very lucky because he's just come from training in PMPS at a large Toronto hospital, and he can give me a procedure not all anesthetists know how to do. This is the first I've even heard there is such a thing as PMPS. After a while he bounces back and I say "you're really confident about this, aren't you? and he says yes, you'll love it, and you are lucky I'm here today". So I said let's go for it, since you are so enthused.
I had to sit up on the operating table while they gave me a "12 hour pain block" - some sort of epidural? it felt like a blunt corkscrew working its way into my mid-back, but no pain at all. Then they quickly got me to lie down & put me under.
I don't know if anyone here has had this procedure for their mastectomy and still experienced pain. But I never had to have so much as an advil. Ever. I am so sorry for all the people here experiencing pain - but if we all had been given this option, possibly this discussion board would not have to exist? I don't know the technical name for the procedure - he just called it a 12 hour pain block, and he learned it at a pain clinic at Mt. Sinai Hospital in Toronto. When I told my Nurse Navigator at my cancer clinic about it, she said she'd never heard of it.This was in 2008.
Best of luck getting your pre-op education message out - it is a shame anyone is going through this suffering when there might well be some easy ways to prevent or at least, lessen it.or perhaps the 12 hour pain block does not work so well every time? I've never talked to anyone who had it done.....
0 -
souad: Amazing....utterly amazing. I did a little googling and the first thing I came up with was this article linked below. Does the word "PREVENTING" just jump out at you? There is plenty of information out there available and so why are these preventative measures not being performed? Certainly cost is the most obvious factor. Perhaps there should be a thread started which reads, "WARNING: BEFORE YOU UNDERGO MASTECTOMY, READ THIS"....with information of this ilk so that patients can print and provide this information to their care providers.
http://www.rsdfoundation.org/en/Preventing_RSD_Mastectomy.html
0 -
But then if any of us thought of contacting the Dr. Reuben, who penned the above research article, for further information, we might have to think again. We might be writing to him in prison. What a disappointment!
http://www.naturalnews.com/028194_Scott_Reuben_research_fraud.html
Of course, this is NOT to state that the research Dr. Reuben provided regarding the prevention of PMPS was not valid....or was fraudulent. But this is sort of crazy-making stuff....
0 -
hi again...wow me posting twice in 2 day ..but i am NOT Crazy after all!! i went to my PT & he wouldnt touch me..he sees redness & feels heat & feels that if he moves me arnd & there is an infection it could go into my blood stream. he is glad i am seeking a 2nd opinion....he is writng a letter to my PS & telling him this!! Yay i am not crazy..i know this may mean more hospitals, antibotics or even having the implants removed..but i am NOT crazy!!! He thinks i shouldnt feel this kind of pain after feeling better...usually that wouldnt happen unless somethings wrong
he also felt the PS should of given me something for my stomach for the antibiotics & maybe even muscle relaxers..he understands not pain med (which i understood too) but muscle relaxers....so we will c what happens tomorrow.
Now my big question is i need more caRE do i stay w/ my 2nd opinion or go back to the one who did my surgery? any thoughts?
0 -
Souad - when I read your post I got chills. Is there any way you could find out what the procedure is called and who performed it? I would love to talk with him to see if he has any information about the success rate. It sounds like you benefited tremendously.
After my surgery my nurse was helping me out of bed and she asked if I were having trouble breathing. I remember saying, "No, it's the pain. It takes my breath away." I just thought that's the way it was supposed to be. Your story takes my breath away, too. But this time it's the hope...
Deborah - I used your link to write Dr. Oz a message. If he contacts me I'm bringing you on the show with me. I laughed out loud when you said we'd have to contact Dr. Rueben in prison.
Sweet dreams to all. Love, Fog
0 -
Well, I did not have a 12 hour pain block but wish I did. Souad u r so lucky u have been spared this pain, and the fact that surgeons don't care about it makes it worse. I am going to yet another pain management doctor tomorrow so we shall she what he says. Im only giving him one chance. If he is drip im otta there!!!
0 -
I am nearly three weeks out from BMX with TE. I have been fighting with swelling and numbness under and behind my right arm (tumor and 26 lymph nodes taken). I called my GS and should hear from her tomorrow about it as well as I have my first fill with the PS on Thursday so I will discuss more with him as well. I, also, feel a burning sensation in under my right arm. Could this be considered PBPS? I have a hard time driving my car since it is a manual transmission (I get more swollen and tired). Any suggestions?
0 -
Shoshi: Go to someone who will RX antibiotics right now if you need them and worry about who to see thereafter for other issues.
0 -
jhwkr - I think your symptoms would be considered normal this soon after a BMX and axillary dissection. PMPS is a chronic condition so symptoms aren't usually given that label until they've been around for 3 months or more. But that said, if you don't see a gradual improvement during the coming weeks make sure and bring it to the attention of your doctor. Like most of us you may hear the words "that's normal" or "there's no reason for your pain". Don't accept that - don't suffer in silence. Come back here and let us know how you're doing.
Driving was hard for me for quite awhile and we have an automatic.So a stick shift would have been impossible. Do you have a friend or family member who can drive for you sometimes? You might also want to post on the Lymphedema forum. The ladies there are a tremendous resource if you feel your swelling might be the beginnings of lymphedema. with love, Fog
0 -
I had my surgery at MDA in Houston, TX. My Dr. was Dr. Kruer. I did get the spinal block. He said it was in trial, but soon it would be standard procdure for mast. He did not mention PMPS. He just said women had less pain after surgery. I did not have any pain for about three months. I did not even have a tylenol. My pain started about the time I started chemo. I suffered for three long years. I had reconstruction Feb 2 of this year and I am PAIN FREE! My pain was caused by nerves being damaged during surgery. I think radiation added to the pain also.
Bettye
0 -
Betteye...wow, you and souad both! Just amazing. If I got a spinal block now would the pain go away? Just kidding, sort of... Were there any side effects from the block?
0 -
No side effects, but remember the block did not prevent my PMPS. The reconstructive surgery and the skill of the surgeon is responsible for me being pain free after three years of misery.
0 -
Hi again, went to 2nd opinion & i trust this dr...he agrees w/ my PS
he doesnt think i have an infection, sometimes there is redness..maybe i a have small underling infection but at this time i have a few options..i can remove the implants now ...i can get another MRI w/ them taking a sample of fluid to make sure ..but he doesnt recomend it....i can try muscle relaxers & see if that helps if in amonth it odeant then take em out & wait 6 months to a yr b4 starting w/ TE. I am not a happy camper now..i feel like i am crazy...i wish i never did this surgery........so i may or may not have an app w/ my PS 2morow that was scheduled a while ago.......so i guess its a wait & c thing now ...unless anyone here has any recomendations.....but i doubt anyone here does. Has anyone here had them taken out & started again or not & still had pain? or thought abt it having the implants removed?thx for letting me share here..i am sitting here crying just thinking abt it all
0 -
Hi again, went to 2nd opinion & i trust this dr...he agrees w/ my PS
he doesnt think i have an infection, sometimes there is redness..maybe i a have small underling infection but at this time i have a few options..i can remove the implants now ...i can get another MRI w/ them taking a sample of fluid to make sure ..but he doesnt recomend it....i can try muscle relaxers & see if that helps if in amonth it odeant then take em out & wait 6 months to a yr b4 starting w/ TE. I am not a happy camper now..i feel like i am crazy...i wish i never did this surgery........so i may or may not have an app w/ my PS 2morow that was scheduled a while ago.......so i guess its a wait & c thing now ...unless anyone here has any recomendations.....but i doubt anyone here does. Has anyone here had them taken out & started again or not & still had pain? or thought abt it having the implants removed?thx for letting me share here..i am sitting here crying just thinking abt it all
0 -
Hi again, went to 2nd opinion & i trust this dr...he agrees w/ my PS
he doesnt think i have an infection, sometimes there is redness..maybe i a have small underling infection but at this time i have a few options..i can remove the implants now ...i can get another MRI w/ them taking a sample of fluid to make sure ..but he doesnt recomend it....i can try muscle relaxers & see if that helps if in amonth it odeant then take em out & wait 6 months to a yr b4 starting w/ TE. I am not a happy camper now..i feel like i am crazy...i wish i never did this surgery........so i may or may not have an app w/ my PS 2morow that was scheduled a while ago.......so i guess its a wait & c thing now ...unless anyone here has any recomendations.....but i doubt anyone here does. Has anyone here had them taken out & started again or not & still had pain? or thought abt it having the implants removed?thx for letting me share here..i am sitting here crying just thinking abt it all
0 -
Fogandroses - just wanted to let you know that I met with my Nurse Navigator today (happened to be at the hospital taking someone for day surgery) and she's finding out about that procedure. We looked at the anesthetist's report for my surgery but there wasn't much except his signature, which we almost couldn't read - but, she was going to be at a meeting with my surgeon later, and promised she'd ask him what he knows about the epidural?...if that's the correct term - the nurse herself knew nothing about this procedure - and she does nothing except work with bc patients! (she said most epidurals are lower down, and not up higher - like mine was at about the same level on the back as your breast is on the front ) - Maybe it's because they have to be careful not to impair the heart/lung functioning so they've shied away from it??? I will let you know..........
0 -
Thanks, Fog...I will certainly check back. My oncologist felt that I was doing okay so far. Thanks again for easing my mind. Jhwkr
0 -
Ok, so I went to a new pain specialist today. The first thing he did was told me exactly what I was feeling, where the pain was, and what it was. Ok, so I was willing to listen to more. He said the pain is from nerve endings and is related to neropathy. I have fibro and neropathy in my feet. I knew ppl with neropathy and/or fibro were more likely to get pain after mast. After I had the mast lol. I told him I have been to PT 3 times since my surgery and he said no amount of PT will help this condition. I knew I was not nuts thinking I just wasn't responding to PT. I wanted it to work. Sooooooooooo, He gave me a script for an old school antidepressant called elivil(I think). Its suppose to help with pain. I do not expect this will help but i will try it I feel like I want a cure not just a pain killer.Ill report back when I think of something else he said...Hipp Oh ya he wants me to use a lydicaine patch too.
0 -
jhwkr - I had the same symptoms as you at 3 weeks. I had only 7 nodes removed. I read on the lymphedema line, and I decided to find a lymphedema therapist and go talk to her, just in case there could be a connection. I also had a swelling feeling in my right forearm, but no noticeable differece. I'm at 6 weeks now. And while the therapist is not saying I have lymphedema, I've had her do 3 lymphatic massages and my arm is doing better. I think much of what you're experiencing is the recuperation itself, but given how many nodes were removed, it may be a good idea to do a consultation with someone certified in lymphedema therapies and discuss it with them.
0
