Post Mastectomy Pain Syndrome (PMPS)
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FOG - I am the same as you - my right side is my cancer side and is pain free. It my left side that had no nodes removed that is making me hurt.
I am going to look into the lymphedema theory. I don't think I have swelling but I think it is worth investigating. Thanks Binney for the input!
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Hi ladies-
What is the site that Binney mentioned to locate PT?
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Jessica - I think this is the one you wanted:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
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I was just gonna say that deeds!!!!!!!!!!!!!!!!
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Fog and Kookiesmom,
The same thing happened to me. The right side-cancer side was pain free last year. The left shoulder and arm was painful. I went for 4 weeks physical therapy for shoulder, neck and back and it did help last year. Now after the exchange surgery I could feel the tightness again.
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My personal theory is that they let the young resident practice on my prophy side and the great head-of-department surgeon did my cancer side. The two sides couldn 't be more different. I didn't think to say I didn't want anyone practicing on me!
I finally asked for my surgurical notes and all it says is: "Dr. xxxx assisted by Dr. yyy..." I was hoping it might say something like "and then the young doctor slipped and everyone gasped." !!!!
I'm trying hard to move on but it's hard to accept this outcome. xoxo
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So, I spoke to a therapist today. I was inpressed because he actually called me back like he said he would lol. He said he has a lot of womenhe treats wit hPMPS. He said it was really not LE. He sent me 3 websites he wanted me to look at. The info is about gadgets that do stimulation. One web site is from a manufacturer of a gadget. Im calling them gadgets cuz I don.t really know what they r. When he spoke to me he ssaid he also did massage, I was really on overload with his info. On one hand i want to give him a try, on the other hand, I don't want to go there and be dissapointed. He does take my insurance. So pm me with your emails and read what he sent me and see what u all think.Hip
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Hip - Don't go out and buy a tens unit or any other kind of gadget. You should have a physical assessment before anyone recommends some mode of treatment which results in an out of pocket expense or some piece of equipment which might not be appropriate for your issues. Also, the jury is out whether it is or is not a variant of LE. Some qualified, exemplary pain medicine experts believe there is some relation. So just make sure your guy is qualified as a LE physical therapist.
I think we have to be careful about massage also. My neighbor just two weeks ago went to an overly aggressive massage therapist and came home in extreme agony. She went to the doctor the next day and learned she had a rotator cuff tear. We don't want to add insult to injury here....
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Thank your for this thread. Yes I do have this pain. I get stabbing pain and I too have the numbness to my elbow and in my armpit. I posted about this on the Stage III forum
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Hey whippetmom, I would never buy my own unit, the PT had it. I agree with the massage. I had it b4 and was in soooo much pain after. I forget exactly what the PT said about the massage, but I did tell him I had massage b4 and it was painful. So, I probably will go for an assessment with him and write down what he says, cuz I am really forgetful lol.
Shana I have read some of your other posts here on the boards and was impressed with what u said. Of course I forget which ones hehe. I will try to find Pain pain pain if its here somewhere on the boards, because the click here is not coming up 4 me.
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Hipchik-When I first went to my PT she wanted me to use something called ETPS which was like an upgrade from the TENS unit from what I gathered. It was not approved for use in cancer patients however and required my Dr.'s approval for me to use it. My PS would not approve it so I never got to try it. I wonder if this is what they were going to try on you. My PT had BC and used the ETPS on herself and raved about it.
Thanks to Deeds and Binney's info here I looked up a lymphodema specialist on the list from "Step it Up" in my area and I called to find out what my next step should be. I told her my symptoms and how my BS and PS are just telling me it nerves regenerating and that I am "sensitive." I told her I really didn't think I should have to live like this if there is something that can be done and she totally agreed that it could be truncal lymphodema and/or PMPS. It never occurred to me that it could be both! Anyway, I am to get a prescription from my Dr. and she said it can be from my primary care Dr. if I don't want to ask my BS or PS which I don't because I feel like they are blowing me off and they are on my sh*t list. I just keep thinking if it was me just being "sensitive" then why is the pain only on the left side, left inner arm and back of left shoulder? Wouldn't I be "sensitive" on both foobs?!! I am going to a local hospital outpatient pavillion so hopefully that is a good thing - that & she is certified like the website said.
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Hip, from what you're saying this guy doesn't sound like he's practicing LE therapy. There should be no gadgets involved, and anything resembling TENS will aggravate LE if it's present. I'd sure check out your other options for LE evaluation before wasting time on this. JMHO.
Binney
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Kookiemom, What is the perscription for>?? Iam confused.
Biney, I have no idea if I have le or not. I did find this PE on the certified LE list, so hopefully he has some knowledge. I am gonna make an appt just for a consult b4 I let him touch me. I have been burned tooooooooooo many times. I just want a better qol, quality of life.
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I have had PMPS for over 2years after my double mastectomy. I like, all of you, on this have tried multiple treatments without any great relief. Just over a month ago I was dealing with other BC issues (metastized to the peritoneal) but they did an exray that showed surgical clips (about 27) left under my underarm where my 13 lymph nodes were removed...EXACTLY where I experience the majority of the pain (I also have the brick in the chest feeling and the cord tied so tight) but under my arm it is "untouchable" almost. All the doctors and myself included just added that in as another of the symtom. Without going on and on...has anyone had that many surgical clips left where the lymph nodes were removed? I am going to my surgeon next Tuesday to discuss why just now I found out about these clips or staples.
Do not know if it matters but I am very small framed 5'5" 115lb so 27 clips is a real cluster under my arm and looks that way in the xray.
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Good Wednesday evening everyone. This journey is full of highs and lows. Tonight I'm feeling a little more peaceful.
I'm back from my appointment with a neurologist and wanted to share what I learned. (I have PMPS on my left prophy side). I went to the appointment armed with printouts from some of the links on this thread, describing PMPS as well as my own personal history. I gathered all the email exchanges between me and my doctors. It pretty much told the story.
He spent an hour and a half with me and examined me from head to toe. For the first time since my surgery in July of 2008 a doctor listened to all my symptoms, asked tons of questions, wanted to know the whole story. He did a nerve test of my left arm using needles and shocking my hand and points all along my arm. Not pleasant but I trusted him so I let him gather all the info he thought he needed.
His theory (it is just a theory - he said MRI wouldn't show a hurt nerve, especially with all the "noise" caused by surgeries) is that my intercostalbrachial nerve was stretched or nicked, not cut because I am improving SLOWLY. This nerve can be damaged during lymph node removal which I didn't have on my left side. But he says that anywhere along that nerve could have been hurt during surgery. Basically, the way I understand it, is that if the nerve is malfunctioning it sends backfire signals all along the nerve and its branches. That would explain why I had burning, tingling, pins and needles from my back to my chest and down my arm. He thinks it's all stemming from one nerve injury.
So what to do? I could take a drug to quiet the nerve. But as he explained - the drug only soothes the symptoms, doesn't speed the healing. If that's true I don't think I"ll take the drug because I can l live with the pain and shocks if I wear a bra 24/7. There aren't many side effects with the bra. He said someday I will plateau and stop healing and then I might want to reconsider taking a drug.
I'm not exactly sure why, but this doctor gave me some closure. I really needed to understand my symptoms. I thought the surgery had gone terribly wrong because I hurt from my shoulder to my wrist. He assured me that something as simple as stretching one nerve could cause all my problems.
I hope my experince helps others here! with love, Lisa
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Lisa,
Thank you very much for sharing your neuro appt. and all the info.
I really hope that all of us could get some closure and meet the right doctor that will listen to us.
I'm so afraid because it seems that I'm the only one who has leg or lower extremities pain besides the upper extremities pain.
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Angel - I just wanted to send you a hug. You will be in my prayers tonight. I don't have any experience with leg pain but I think I remember you saying that your friend suggested you might have fibromyalgia? Have you talked with Barb1958 here? She is a wealth of information and might be able to tell you what kind of doctor could diagnose (or rule it out).
Don't give up hope. You will find answers and you will feel better.
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Hi Fog, thanks for the infor from your neurologist. What drug did he say would be effective?? So there is no cure??
Angel, I have just been diagnosed with fibromyalgia. I thought I had it but just had if verified by an arthritis specialist (can't think of the kind of dr). I have had body aches and pains for many years but fibromyalgia is a new diagnosis. Drs just said I was nuts. I had the blood work also to rule everything out, like 6 viles of blood lol. I have l lowerer extremity pain, foot pins and needles and numbness. I think they r 2 seprate issues, fibro and pmps.
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Smart the surgical clip thng is so unacceptable. Are they gonna take them out?? Maybe u can sue
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Thank you hipchik..I will find out from the surgeon that put them in 2 1/2 years ago when I meet with him next week.
I am new at this site or even talking about what is wrong with me online so I hope I didnot barge in with some other issue. I have had the PMPS for 2 1/2 years and just wanted to see if anyone else found the surgical clips/staples to be the issue. And if they have any suggestions for questions to the surgeon (very renowned) of why I have left these in my body.
I have googled the begoogle out of it and all I can find for cllps or staples or as markers. I had 13 lymph nodes removed and have more than 25 clips.
Since I just found out about these ...just wondering if other mastectomy gals dont know they have anything left under the arm that they removed the lymph nodes from like me. ..just dont know
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Hi Ladies-
I just wanted to say that in the past month that I have been reading your posts I have learned more here than the past 7 years from any doctor or google. Bless you and sending prayers out to all. I have wonderful girlfriends but I am the only one of our "Sex in the City" group that got BC. They really don't get it although they sympathize. So grateful for the sisterhood here.
Jessica
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Hipchik - the prescription is to get evaluated, diagnosed and if necessary treated for truncal lymphodema if I even have it it. I always have to get a script for physical therapy and the lymphodema therapy is the same deal I guess. I go to my pc tomorrow so hopefully he won't have a problem giving me the script instead of PS.
smart23 - that is incredible - over 25 clips???? No wonder you are having pain & problems. I don't think I could wait until next week - I'd be going crazy knowing they were in there. Why on earth would they leave them in you? I know after my vacuum assisted biopsy they put a clip in where the tumor was but I didn't know they did that for nodes too.
Fog - Interesting about the nerve being injured. If just stretching one nerve can cause all that discomfort that really sucks. I wonder when they are doing surgery if they can see the nerves?
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Smart so maybe the "clips" are some kind of permanant thing that was suppose to be in there??. also, we do learn a lot on these boards. You r not barging in u r joining in. Googled the begoogled lol Smart
kookiemom, so where will u get an evaluation?? I am gonna see an LE physical therapist, but I have to decide when I see him if what he says is kosher. He might be a nut 4 all I know, I already saw a nutty "LE specialis"t. Other than a diagnosis of fibromyalgia no dr has mentioned the term PMPS to me.
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Smart, scroll dow the forum list, someone else wrote about clips. Someone suggested getting thesurgery repot, great idea.
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oops smart I just saw u posted on that thread.
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Hey Girls,
I have seen the report from CT and MRI on myself. It always mentions surgical clips seen. I just thought it must be common because nobody ever said anything about it. I am going in for reconstrution on Feb 2 and you can bet I will be asking the PS about it. I will be back to post his answer here. If this is my problem.....I want to hurt a Dr. and hurt him bad!!!!
Bettye
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Sweet ladies, Thank you very much for all prayers and concern.
I saw a rheumatologist last year for Fibro but said I don't have it. I'm kind of confuse now if I should see another rheumatologist, should I see a neuro, or ortho. I do not like to bounce from one doctor to another. It is hard with full time work. Last year all my blood work is normal except for vit D which I'm taking a lot right now (thanks to vit D post). I should read about Barb1958 or PM her.
I should check with my surgeon about the clips. I remember hearing about the clips with my biopsies before mastectomy.
Thank you ladies
Edith
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I went to see my primary dr. today and he said I have swelling in my upper left back. He diagnosed truncal lymphodema and gave me a script for therapy with a lymphodema specialist. I will be going to a local hospital that has an outpatient pavillion where they do all kinds of therapies. The woman I spoke to is a licensed lymphodema specialist so I am hoping she will be OK and won't do more harm than good. Even though getting a lymphodema diagnosis is crappy I feel better knowing I am going to get help and that it wasn't just me being "sensitive" like my PS told me! What a jerk!!!! When my PS examines me he only looks at the front - my pc dr. looked me over front & back and thats when he saw and felt the swelling. It was a relief that he found it!
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So I made an appt for monday with the PT. Any of these PT's can claim they r the perfect fit for what we need, but once u start with them they may not be. I went to an le specialist , according to her, and she was a quack. I should have realized it when she took no insurance. Its so hard for us to know about these ppl because we really have no knowledge about the subject or know anyone that might have gone to the pt b4 with our problems. They might be great doing pt on a knee replacement but not on us. I hope this pt is knowledgeable, cuz I have a lot more fish to fry!!
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Here are a couple of pages of information about specific aspects of lymphedema therapy, so you'll know what to expect:
What therapy involves (on the left-hand side of the page below, click on "What should a therapist do about your lymphedema?"):
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmManual lymph drainage massage (MLD):
http://www.stepup-speakout.org/manual_lymphatic_drainage_massage_lymphedema.htmCompression bandaging:
http://www.stepup-speakout.org/wrapping_bandaging_for_lymphedema.htmOne thing that might help is to copy off the National Lymphedema Network's Position Paper on Treatment and take it with you as a "talking point," so you and the therapist can both be on the same page about the treatment you expect. Lymphedema therapists are rare enough that they usually aren't supevised by anyone knowledgeable about treatment standards, so even if they were correctly trained they can get off track easily with their own versions of methods, short-cuts, or gadgets. <sigh!> Having a written copy of the standards with you lets them know you're aware of what they ought to be doing for you. Click on the "Treatment" Position Paper on the right-hand side of this page:
http://www.lymphnet.orgHope that helps some! Sure isn't a bit clear to me why we have to manage our own post-cancer care this way, but it is what it is.
Be well!
Binney0
