Post-mastectomy pain syndrome

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Post-mastectomy pain syndrome

by Linda_D_13 on Mon Mar 15, 2004 12:00 AM

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Hello - I'm wondering if anyone else has had experience with intense, unrelenting burning pain after a mastectomy, in the armpit and on the incision. It's been about a month since my mastectomy and I haven't been rid of this pain one minute; it's only relieved to a certain degree by narcotics. My surgeon knows nothing about the syndrome, apparently. I've read a little online and plan to set up an appointment with some pain specialists, but I'm astounded that there's so little information about this. Nothing on Susan Love's site either. Thanks. Linda D.

Post Mastectomy Pain Syndrome

by Lucy_A on Mon Mar 21, 2005 12:00 AM

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Linda, I am so sorry that I have just noticed your mail from March 2004 regarding Post Mastectomy Pain. And I am so sorry for your pain. I had my lumpectomies and mastectomy 3 years ago and I am sorry to tell you this but I still have the pain. At least 3-4 days a week I have pain under my arm pit and across my chest - burning and stabbing nerve pain.I have been told by MD that it will go away!! But when? And now no one will give me any pain meds. !!! I have been to a pain center and they want to try me on neurontin which is used for patients with other nerve pain conditions but I am afraid of the side effects.I am thinking of trying acupuncture next. There is very little out there about the syndrome. Good luck with your search for relief. Lucy New York

Chronic Post-mastectomy Pain

by Sazzy on Tue May 17, 2005 12:00 AM

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Dear Lucy, I hate to say it, but it's been two years and four months since my double-mastectomy, and I still have the "bunji-cord" tighteness and pain under my arms and across my chest, relieved only by hydrocodone (and every other dose or so, I have to take Benadry to combat the itching). The tightness is so bad sometimes that I panic, and I cry, just out of anger. I'm on disability because of it, and no one seems to have an answer. My primary care physician says that because the neuro-muscular pain has been chronic (since waking up from the surgery) for so long, it'll be this way forever. My surgeon never even talked about the lingering effects of the surgery. He just drew little smiley-faces on the exam-table paper to describe what I'd be left with post-surgery, but also forgot to tell me about the sagging, multi-layer skin folds he left behind, which he says used to be part of the side of my breast tissue, and which now are disgusting and depressing to look at. The pain and the unsightliness of my chest are daily reminders of my breast cancer, and it's hard to think positively about non-recurrence when I have these with me every day. I wish someone would develop a remedy for the chronic tightening and pain that doesn't involve habit-forming drugs. Please, God, send that person to all of us who fight this pain every day. We need help now, and it's NOT in our heads. By the way, if your doctors won't give you pain meds, it's time to change doctors. This is a recognized post-surgical problem (lots of references on the web under "post-mastectomy pain", and pain medication is responsible pain management, to which you are entitled, no matter how long you've been in pain. Shame on the physicians who have refused to treat this very real and chronic condition!

Answers...

by Pmpsros on Thu Jul 07, 2005 12:00 AM

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Dear fellow pmps sufferers I too have been experiencing horrendous pain after breast surgery – postmastectomy pain syndrome is the diagnosis, and it’s been a long search to find someone who can treat it. The pain is debilitating and feels like someone has taken a knife to my chest and shoved a sharp blade up under my arm. It developed about 8 weeks after mastectomy and has continued unabated. The only time I get relief from it is when I go to bed and don’t move - once I move any part of me the pain is there. The pain extends across my chest right down my arm to my wrist, and I am also hypersensitive to touch. I have been to numerous doctors, psychologists, psychiatrists, physiotherapists. Because I had not much movement in my arm, the initial diagnosis by the physiotherapists of my condition was frozen shoulder. I received treatment and pain medication for a frozen shoulder condition for quite some time without any improvement. The diagnosis has since proved to be incorrect. I had the mastectomy in September, 2003, and it wasn’t until February this year after searching for answers that I found someone who understood the symptoms I was presenting and was able to treat this condition. While I do have to travel quite a distance to access treatment it is worth it because I didn’t know how I was going to live the rest of my life in this state of pain. In the four months since treatment began, I have been able to stop taking Neurontin which is one of the main drugs and reduce Endep being used for my nerve pain. They were drugs that did not take the pain away, but at least took the edge off it, and made it a bit more bearable. I’m now able to move a lot better and my sensitivity to touch has improved incredibly. My chest used to feel like it was set in concrete. The person I found to treat me is a physiotherapist who specialises in treating postmastectomy pain syndrome patients. She is currently doing a PhD thesis on the treatment of this condition. Because I have to travel a long way for treatment I only see her once a month and she gives me a very precise programme of massage and exercises to perform daily. Because I’d been suffering for such a long time prior to receiving the correct type of treatment, it was difficult for me to believe that I could be helped. I have been extremely diligent in doing exactly what she has advised me to do in between consultations and I have to say that my pain has decreased about 50% in the past four months. Although I may have some degree of this problem for the rest of my life, the improvement achieved so far is significant and my life is so much better already. The continuing progress gives me hope that by Christmas I may have a tolerable level of pain without meds. The process is slow and painful, but it is worth it and I have so much more movement in my arm as well. My physiotherapist has explained to me that muscle and nerves in the area have been damaged by both the surgery and the radiation and the whole area is ‘pulling’ tightly. The therapy I am receiving is designed to progressively ‘release’ the tightening in order for the pain to decrease. My hopes are now high for a substantial improvement and I feel that the problem doesn’t just go away with the passage of time. Based on my experience, it is important to seek treatment that can have immediate effect. Unfortunately, medical practitioners in the area where I live did not seem to know how to recognise or treat this condition in a severe form as they just don’t see it - only a small amount of patients present with this problem to the degree that I have it. I understand that possibly up to 30 percent of patients are affected to some degree after breast surgery. The good news is that there is help for this condition out there, you just have to find the right practitioner who knows exactly how to treat it.

Post-mastectomy Pain

by Happynana on Mon Aug 28, 2006 12:00 AM

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Dear pmpsros, I am very interested in your treatment for this. Could you please e-mail me? happynana

Post Mastectomy Pain

by Pam_Anonymous on Tue Aug 29, 2006 12:00 AM

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I have had this post mastectomy pain syndrome for about a year and a half. The most helpful thing I have found is the lidoderm patches. They help a lot during the day. At night I don't wear them and I have started back on neurontin recently though I don't much like it. It does fuzz out the pain some though and consequently helps with sleeping. I am trying myofascial release. I have only had two appointments to date. If anyone has had anything more specific or any particular luck, good or bad, with this myofascial release, I would be interested in hearing about it. this is a big drag and not well publicized. I think it should be. If anyone is interested in being interviewed for an article, please say so here so that we can be in touch. Sincerely, Pam Anonymous

Post Mastectomy Pain Management

by Neighbor on Tue Nov 21, 2006 12:00 AM

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Can you e:mail me with information about the therapist you are seeing? Thanks.

Post Mastectomy Pain Management

by Neighbor on Tue Nov 21, 2006 12:00 AM

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Can you e:mail me with information about the therapist you are seeing? Thanks.

RE: Post Mastectomy Pain Management

by Pmpsros on Sun Dec 17, 2006 12:00 AM

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On 11/21/2006 Neighbor wrote:

Can you e:mail me with information about the therapist you are seeing? Thanks.

My therapist is in Sydney, Australia.

RE: Post Mastectomy Pain Management

by Pmpsros on Sun Dec 17, 2006 12:00 AM

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On 11/21/2006 Neighbor wrote:

Can you e:mail me with information about the therapist you are seeing? Thanks.

Hi

My therapist is in Sydney Australia. 

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