Post Mastectomy Pain Syndrome (PMPS)
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whippetmom - Thank you! I didn't know fat grafting was all the same.
Totally agree about the fat... tried so hard to burn off all the fat and now it's gonna help me? I guess that's one good thing about getting older! More fat!
Totally love the ostrich with his head in the sand. They do the same thing with LE. Let's pretend it doesn't exist! GRRRRR!
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beacher - I hope you find someone soon who will take the time to help
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I must add re: fat graft transfer, that the skill of the surgeon performing the procedure is also very important.....
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Thanks Again whippetmom! And not sure i ever asked this to ANYONE else has anyone had an MRI???? It should show all soft tissue that is part of the problem right???? so confused overwhelmed Got to get off this computer and on with life.. No this is no life not anymore, this is my life fighting but will i win??? scared!! Hope the anesthesia pain specialist fixes this? and how the heck am i gonna get a referral for that omg
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Hi all, I had severe PMPS since the moment I woke up from surgery 1/11/11. I was in so much pain when I was released from the hospital I couldn't believe it and I had a pain pump for five days even!! The pain was awful, worse than when my hand was crushed by 700 lb bundle of metal. Surgeon put me on gabapentin, tried a physical therapist but she had little experience with this.
I got fed up and saw a medical internist. She referred me to the Pain Clinic and new physical therapists (I have two, they job share). I received a series of ganglion nerve block shots in the neck for the right side (the left didnt warrant it in my opinion) and cortisone shots for a spot on the right where the nerve block didnt work. I started out with two shots a week, then down to one. At my last appt. the dr. and I decided the pain was subsiding enough that I didnt need it. They did up my gabapentin to 1800 mg a day and added amitriptolyne 25 mg (it helps with pain and sleep...I was still waking up in pain even six months after the surgery). The nerves were and are taming down but I am also seeing an excellent psychologist who specializes in patients with chronic pain.
In addition to the neuropathy from the node dissection and BMX, I have scar tissue adhesions. I had no idea how tight it had gotten!! I see them twice a week for an hour. They massage and work out the scar tissue, work on nerve desensitivity thru massage as well, stretching, and some LIGHT strength training (I had one of the therapists GUNG HO on buffing up my weakened muscles and set me back considerably. After a discussion with my pain dr. we decided the MAIN goal is pain reduction. He asked if my strength is good enough for what I need to do and I said yes. So they were informed, by me, that I will not be doing anything so strenuous anymore. So we use the weight of my own arms for strength training).
I finally feel that I have a team of professionals that have their act together and I am getting some where. I still have residual pain left over (chest area, down the sides to where the ribs end, around the back like where a bra would be near the sides, and the back of the upper arms, and armpits).
I highly recommend a pain counselor (if they are good). I have had two sessions and its amazing.
I used to be able to do very little with my arms. Then I could do more and did more, but would be in severe pain by 6 pm (weird that that time was consistent). Now I have very good days and work like mad, and it takes one to three days to feel the pain. The counselor explained and showed a graph...Over exertion leads to pain, in my case my depression gets worse, then inactivity and more depression.. And the cycle continues. My current assignment is on days when I feel good, don't go gung-ho, scale back the activities to a medium range and pick a point of activities right below that. I am to do that, then add a little bit more, plateau, add a little bit more. He gave me some reading and what an eye opener.
I finally feel like there are people in charge of my pain, not the pain controlling them. I can not say I control my pain yet, but they tell me in time, I will.
I also love my one pt therapist who is into yoga...what a way to have pyschological tactics to deal with pain, too.
I still feel lost in the pain, but I have people pulling me through.
But what is odd, I am sort of scared of life without pain...It has only been a constant and controlling my life since January 2011, but wow, what a thought huh? It has become such a driving force in my life...
I really hope this helps anyone out there who is and was struggling like I am.
The medical internist sent me into the pain clinic with this thought though...maybe they can help me, maybe they can't but it's worth a try... at least if things didn't work out, I had the umbrella...My pain dr's were similar in their attitude..we will try this shot..if that doesn't work we try this approach and made it clear we would keep trying until all options were exhausted!!!
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Wow mycinnamon you have been through alot! What a blessing to have found doctors who would not give up and who work in tandem to help control your pain. Just knowing there are doctors out there like yours will give hope so many who are hurting. Thank you for sharing your story.
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Has any ever had an MRI on the armpit and shoulder area ?Where the tightness and rom is??
I have asked this about half dozen times?
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beacher4209 - No, I didn't have an MRI in the armpit or shoulder area. Although, my doc did want me to have a dopplar ultra sound on my arm to see if I had blood clots.
I think an MRI is a good idea and I would definitely go ahead and do it. It will help them see if there is a muscle issue. It can't hurt you ... at the very least it will show that you don't have any muscle or bone issues going on. Like mycinnamom posted above, you have to start somewhere and then move from there.
mycinnamon - Thank you for sharing your story. So glad that although it's been long and hard, you're getting help. That is encouraging and it gives others hope! Thank you! [[[[[[hugs]]]]]]
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Thank you so much for your response dawnhope ,yup im gonna do it......
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What I found from my pain drs is that they dont care about "diagnosing" my pain. They know its from the node dissection and nerve damage which has made neuropathy. I tell them where it hurts, how it feels, what makes it better, what makes it worse, etc (and I am very specific and thorough) and they treat my symptoms (each and every spot too) not some overall label.
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Jumping in here kind of late regarding the fat grafting post, but I have to differ as to the statement that all fat grafting is the same. The "common", "traditional", "regular" - whatever we want to call it, form of fat grafting is taking a substantial amount of fat and injecting it. Micro fat grafting, which Dr. Khouri in Miami does, differs in that the fat is injected droplet at a time and not all in one spot. He and others who are doing this achieve a much higher survival rate of the fat graft. In conjunction with the external expander (Brava dome) an even better outcome is possible. On miamibreastcenter.com it is explained very well, with images, patient photos and more.
Have to agree with Whippetmom that surgeon skill is VERY important to ensure a good result.
There are several threads on here about fat grafting. Check out Still Uncomfortable with Implants, Has Anyone had Micro Fat Grafting?, Microfat Grafting or Brava Doctor Recommendations, or Visible Ripples in Implants for tons more info.
Happy Micro Fat Grafting "graduate"
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Lee: My own PS did it the same way that Dr. Khouri does - just in smaller quantities, to fill in contour defects, not build a mound. As I stated, it is all a matter of "refinements"...in the manner in which the fat is applied to the mound.
Edited to add: In my case, the fat was applied in many locations for purposes of shaping the mound, filling in ripples and other contour defects.
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Plastic surgeons have differing opinions on the method of FGT, but the premise is all the same. Harvest fat and apply it to another location on the body. It is the methodology of extracting or applying, and/or refining of of the fat which differs...
http://www.realself.com/question/how-does-fat-transfer-work
But it was in 1984, that Mel Bircoll M.D. "introduced micro injection of fat grafts using liposuction techniques.That development allowed more plastic, dermatological and cosmetic surgeons to offer their patients fat transfer for cosmetic reasons." Micro fat graft transfer is a technique used by many physicians.
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Hi Whippetmom, i think someone may have mentioned the Santa Monica area...What is the name of the dr. that is good in L.A?
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Beacher: Good for what procedure? Fat graft transfer??
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Whippetmom, any PS that can look and feel my problems and say "i can fix that" Who can feel feel my rock hard mx,swollen armpit, my augmented breast that is alot larger then mx. My PS seems to think its all fine. Im not happy with the pain or the look. I think 2nd opinions are my next step. I am going to ask for anesthesia pain specialist like you recommended too. i am bringing all my literature on pmps also
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beacher: Oh my goodness, yes I have two plastic surgeons in mind. One of them is in San Diego and the other Santa Monica. I'll PM you....
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I think i dx myself!!! i believe i have aws "auxillary web syndrome" (i know spelling is wrong) but i researched it like crazy and i have all the symptoms!!! anybody else know anything about this?
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beacher - have you checked out www.stepup-speakout.org ...it's a lymphedema website, but on it they have a section on axillary web syndrome. Check it out!
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dawn-hope,, and to yes i have been on it and many more,that's how i figured it out! i'm not happy i have it but i am happy i know what it is and im not imagining it. Not sure who i should go to Dr. wise now i got a feeling none of them know a thing about it ,so i will have to show them all the info i have collected and make them REALLY observe and feel my armpit.I got a feeling they may get insulted or think im trying to sound smarter then them,but in this case i may not be smarter but i Do know what this is wish me luck!
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beacher - Try all your docs until they listen to you. My issue was different that yours ... swelling in my fingers that turned out to be lymphedema. But the issue was the same with the docs: getting them to pay attention and listen and help me. When I told my onc about it, she just rolled her eyes. My BS looked at me wide-eyed, totally didnt' get it. My PS told me, "Well, if you have LE, it is very mild." YEAH, and gonna get WORSE! Ugh. I finally called my primary care physcian and he's the one that took me seriously. I gave him the name of a local lymphedema occupational therapist. He wanted to do a dopplar ultra sound on my arm first to make sure I didn't have a blood clot and when that came out OK, he referred me to the LE OT.
So ... I would not only have the paper work showing them the problem, but I would search on the stepup-speakout site on finding a therapist so you could have names and phone numbers to whom your docs could refer you. Over on the LE threads, most of us have had to fight to get our condition recognized and taken seriously... so don't be surprised if you're blown off by your docs at first. The picture posted above by whippetmom is so true ... most docs will stick their head in the sand and pretend that you're crazy, over-reacting or it's all in your head. Don't give up and keep fighting, keep pursuing until someone listens to you. Even if they don't believe you, get that referral to an OT or PT. Don't give up! It's ridiculous that sometimes we have to be that persistent but be the squeaky wheel on this issue until someone takes notice.
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Yup Dawn-hope i got the list ready to go,not sure they are in my insurance but i do not care i will go into my retirement fund to get help,what good is retirement if you feel pain!
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I'm so glad I found this thread. I had never even heard of Post Mastectomy Pain Syndrome. All I do know is that I had bilateral mastectomy in Ocotober 2009 with complete node removal on the right and level 1 removal of nodes on the left. The pain I had when I woke up from surgery is the same pain I have today. My OC referred me last month for severe LE to PT and after the fourth visit yesterday I felt like someone had tried a torquet around my arm. The spasm didn't let up for at least an hour. The PT was trying to show me how to do the treatment myself and after I did the right arm with my left arm, the right arm didn't move again for hours. She did the left arm but wants me to do the left arm first tomorrow morning and then do my right, so the spasm will be after I've done the treatment. I'm still on the percaset through I'm down to 2 a day, plus two xanac and still on anti-nausea medication. My stomach is still upset every morning when I get out of bed. I had 8 chemos prior to surgery, 12 after surgery and Herceptin for 12 months, 84 total radiation treatments, including the 8 boost to my back. I thought this would be like any other surgery, 6 weeks, healed, finish the treatments and move on. PMPS is a constant companion. After Stage IVc breast cancer I should be happy to be alive, and most days I am but sometimes, its really hard going.
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hmmmm seems like you are not better everyday? not making fun,im just saying this is sad for t you.... you have been through A LOT! you know ive come to the conclusion for mr at least No cancer did b not suck,that was easy to get rid of (in a matter of speaking) but the s/e left behind are worse may not kill you but sometimes with the quality of life your left with maybe the other choice is not so bad...... sorry to sound so morbid,
im still working on my pain,and have researched ALOT! maybe i could tell you what i have learned?i will pm you soon
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beacher4209
Bettereveryday is a state of mind I try to maintin not my physical desciption. HaHa. When I was diagnosed on June 24, 2009, the prognosis was not good. Women with my type of "invasive, extremely agressive" breast cancer had little, if any hope. Out of 100 women 89 would die during chemo 8 during radiation and the other 3 would be gone by 12 months, 2 days. Every day since June 26, 2010 is just icing on the cake. Even with the pain.
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Bettereveryday! yes you are doing better every day .i read your dx and you are amazing.I will quit my whining for now Take care 0
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Dear beacher4209, don't you dare stop whining. One of us whine's another one helps with information, links, etc. that's how we learn. None of us asked for this horrible thing to happen and there are so many things we don't have anyone to talk to about it, who understands except the ones who have been there. I had an appointment with my RONC last week, he said my ONC seemed to have a good handle on it, call if I had any problems, see you in six months. Does that sound to you like help? A physical therapist tells me there is nothing for truncal lymphedema,? My stupidity tolerance levels are not what they used to be. But here I find answers, recommendations fot help, links to where to find help, and women who share their good days, bad days and love. Mental and physical help from the women who've been there, going there, and are winning the war.
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BetterEveryDay, that was a lovely post, very well said. Thank you! Had to laugh when I got to the end, though, because I read it as "women who...are whining the war." That too! Whine on, Beacher!
Gentle hugs,
Binney0 -
To all, this is the place to whine. Nobody else can truly understand what this all feels like except those who have it. Besides, if everybody else gets to whine, then I won't feel so bad when I do it!
Current whine: my back is trouble. Seeing a chiro tomorrow with hip xray to determine what's up with the hip pain. Also the upper stuff--my upper back has no strength at all since the surgery.
Lynda (Dragon)
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i just finally posted some phot's on the picture forum,look what i have to deall with...thet are even close to being symmetry.....and have l mx side tightnes and armpit problem aws... please give your opinions HELP
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