Post-mastectomy pain syndrome

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RE: Answers...

by arifa on Wed Aug 04, 2010 01:16 AM

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On Jul 07, 2005 12:00 AM Pmpsros wrote:

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.

Hello i would be gratefull if i could find out what type of physio and treatment your having as this sounds exactly like my pain, my chest is like concrete, my arms so sore cant lift it at times, thanks arifa ali

 

RE: Chronic Post-mastectomy Pain

by skyjumper on Sun Aug 15, 2010 04:53 AM

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On May 17, 2005 12:00 AM Sazzy wrote:

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!

Dear Sazzy: I too am a victim of a double masectomy and have many of your symptoms. Its been over 4 years and no relief. Its a hard pain to describe to the doctor. I have been to 4 doctors thus far. Had my implants taken out. All to no avail. I am seeing a lumphatic specialist, and go for 8 weeks. I have recently been fitted for a special tight torso balaro bra. Taped up, zipped up, massaged up, and nothing, nothing has relieved my pain.  Found an article on internet by a Robert A Waschler M.D. FACS LTC, MA, Chief Surgical Oncology in Honolulu. Its a long article but I think he, at least is on the right tract as to the cause of all this. Can't get to Honolulu but I plan on contacting him anyway. I will report back any information I can gleen from him.

RE: Answers...

by marcies on Fri Aug 20, 2010 10:26 PM

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Today is Aug. 20, 2010.  I see that your post was from Jul 2005...so I have to ask, did you acheive more pain reduction with continued therapy?  I have had PMPS since my double mastectomey in March of 2007.  I have tried so many things to rid myself of this never ending pain.....all to no avail.  I am servrely allergic to asparin based products, so narcotics are not an option.....I have tried, pain patches, capsacin, injections in the are pits as well as the thoracic spine, currently I take a large does of an antidepressent which helps only minimally, I was taking Lyrica, but can't really finction on it.....I am desparate for any answers...

RE: Post Mastectomy Pain

by Paradise_on_Earth on Fri Aug 20, 2010 11:45 PM

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On Apr 28, 2009 12:00 AM chico wrote:

 

On 1/20/2009 wallylarkin wrote:

hi to all-

I had a double mastectomy with reconstruction in january of '08.  for 6 weeks following the surgery I had intense pain until finally a nurse practioner in the surgeons office said it was nerve pain.  I started 30mg of Elavil that night and within a couple of days the pain decreased in half.  they then put me on 400 mg of Neurontin.  I also continued taking a narcotic pain med.  this worked for about a year until I became a bit to dependant on the narcotic.  I got myself off of it and am now revisiting some pain :(  my doc increased the Neurontin to 900mg but that hasnt helped much at all.  my pain is a constant awareness....a sensitivity of these bags in my chest.  I have trouble getting to sleep at night.  it feels like a tightness but its mostly a constant feeling of the implants in chest.  I know its nerve pain but I wonder about whether to get the implants out.  I just want off of these medications.  if anyone has any info or advice about a situation such as mine I would really appreciate it.  none of the docs seem to know what to do except medicate.  Help!

 thank so much.

warmly,

Lisa

Dear Lisa, Im so sorry to hear of your suffering but at the same time im relieved that I have finally met somebody with an identical story to mine. Like you I had a bilateral mastectomy with immediate reconstruction in Aug 2008. suffered severe pain and tightness. The pain has definately got better but the tightness is unbareable. Like you I am having trouble sleeping and living a normal life. Again, like you all I can feel is this crushing feeling like my implants are stuck to my chest. I am seeing my plastic surgeon on 11th May to talk about having the implants removed. After reading lots of these posts Im a little worried at the fact that there are lots of woman experiencing the tightness and they dont have implants. Id be devastated to have them removed and wake up feeling exactly the same. However, I know I dont have any choice but to go ahead and pray it gives some relief. Have you had yours removed yet? Id be grateful to hear from you.

Love Sandy x

 

Sandy, 

I feel your distress, I too had bilateral mastectomy with expanders for reconstruction. I too am re-thinking the expanders and opting to have expanders removed, but feel like you what if I still have the unbearable sensation...I have to have part of my skin that is dying, removed..when I see the doctor in the upcoming week I will discuss about having them out...but still concerned and perplexed...

Keep me posted of what you do and the results...

:( Marty

RE: Post Mastectomy Pain

by Pam_Anonymous on Fri Aug 27, 2010 04:06 PM

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I had not checked on this site for a couple of years I think, which is a good sign, no? I had a mastectomy and PMPS really badly for several years. I tried most of the things mentioned here and had to quit my job as a teacher because it was too unrelenting. I could do some things, but could not teach 7 hours a day.

 

For what it is worth, the pain has lessened over time. It is still a problem, and probably part of the improvement is just due to getting used to the pain and to some extent ignoring it as best possible.  It wasn't a conscious effort, though I did sometimes try and focus on some other part of my body which wasn't in pain, like my feet. Even now that I am writing about it, I feel conscious of more pain. I did not have reconstruction or radiation, so the mastectomy was the cause.  My surgeon simply couldn't hear me. He was very defensive and kept talking about all the surgery he had done and never, never had any women had this problem.i.e. it must be me, huh?

I got him articles which I don't know if he read, but the shear volume had to impress him somewhat (of course, there isn't enough research but there is some). Also when I left teaching I had to fight with the disability people. I also sent them as much documentation as I could find. They weren't having any of it. In fact, one woman wrote me that they "just weren't impressed." Still in the end they granted me a disability retirement. thank heavens. Persistence is helpful.

best of luck . here is hoping.    Pam G

RE: Post Mastectomy Pain

by Paradise_on_Earth on Sat Aug 28, 2010 04:00 AM

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On Aug 20, 2010 11:45 PM Paradise_on_Earth wrote:

On Apr 28, 2009 12:00 AM chico wrote:

 

On 1/20/2009 wallylarkin wrote:

hi to all-

I had a double mastectomy with reconstruction in january of '08.  for 6 weeks following the surgery I had intense pain until finally a nurse practioner in the surgeons office said it was nerve pain.  I started 30mg of Elavil that night and within a couple of days the pain decreased in half.  they then put me on 400 mg of Neurontin.  I also continued taking a narcotic pain med.  this worked for about a year until I became a bit to dependant on the narcotic.  I got myself off of it and am now revisiting some pain :(  my doc increased the Neurontin to 900mg but that hasnt helped much at all.  my pain is a constant awareness....a sensitivity of these bags in my chest.  I have trouble getting to sleep at night.  it feels like a tightness but its mostly a constant feeling of the implants in chest.  I know its nerve pain but I wonder about whether to get the implants out.  I just want off of these medications.  if anyone has any info or advice about a situation such as mine I would really appreciate it.  none of the docs seem to know what to do except medicate.  Help!

 thank so much.

warmly,

Lisa

Dear Lisa, Im so sorry to hear of your suffering but at the same time im relieved that I have finally met somebody with an identical story to mine. Like you I had a bilateral mastectomy with immediate reconstruction in Aug 2008. suffered severe pain and tightness. The pain has definately got better but the tightness is unbareable. Like you I am having trouble sleeping and living a normal life. Again, like you all I can feel is this crushing feeling like my implants are stuck to my chest. I am seeing my plastic surgeon on 11th May to talk about having the implants removed. After reading lots of these posts Im a little worried at the fact that there are lots of woman experiencing the tightness and they dont have implants. Id be devastated to have them removed and wake up feeling exactly the same. However, I know I dont have any choice but to go ahead and pray it gives some relief. Have you had yours removed yet? Id be grateful to hear from you.

Love Sandy x

 

Sandy, 

I feel your distress, I too had bilateral mastectomy with expanders for reconstruction. I too am re-thinking the expanders and opting to have expanders removed, but feel like you what if I still have the unbearable sensation...I have to have part of my skin that is dying, removed..when I see the doctor in the upcoming week I will discuss about having them out...but still concerned and perplexed...

Keep me posted of what you do and the results...

:( Marty

Hi Sandy

I had my expanders removed on Aug. 23rd, 2010..on Monday..am recovering, today is a good day...it's a setback so it will take a couple of weeks for the healing to take place, but even now I still feel the tightness.  I'm still hopeful as I recover the sensation will somewhat subside, I notice my chest gets tighter in the evenings.  But, what helps me right now is the relief of not having anything foreign in my body..and with time I intend in looking into specific types of excerises consisting of perhaps stretches and breathing excerises.  Of course if you like I will keep you posted of any progress I make with time..

I cannot tell you if removing the expanders will actually help you...but some things to consider is: 1) Can you live the disfigurement you will have if expanders are removed. 2) How long can you endure having the expanders.. Psychologically,  having the expanders removed may give you the relief as myself of NO foreign objects inside the chest.  Again, not sure yet, but still am glad that I removed the expanders...to what degree will this sensation  lessen.  

Hope, this is somewhat helpful...my thoughts and prayers are with you...:( Marty

RE: Post-mastectomy pain syndrome

by paulineTherese on Sun Sep 05, 2010 06:54 AM

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  LINDA 3

              sorry to hear of your pain.i too have the same pain i had a masectomy june this year and i have tried most pain killers i saw my sergeon last week he told me i could have the pain for life as it was due to a damaged nerve when i had my breastoff its not much to look forward to but what upsets me more the docters dont seem to care .wonder how they would cope iff it was them. i have a diabetic husband who as alzhimes so i dont get any help from him physicly or  mently im not a young woman cant belive i had cancer still feels im in a dreami had to leave my home in qld and go live in nsw with married daughter my worlds just collapsed around me. pauline

RE: Post-mastectomy pain syndrome

by paulineTherese on Sun Sep 05, 2010 06:54 AM

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  LINDA 3

              sorry to hear of your pain.i too have the same pain i had a masectomy june this year and i have tried most pain killers i saw my sergeon last week he told me i could have the pain for life as it was due to a damaged nerve when i had my breastoff its not much to look forward to but what upsets me more the docters dont seem to care .wonder how they would cope iff it was them. i have a diabetic husband who as alzhimes so i dont get any help from him physicly or  mently im not a young woman cant belive i had cancer still feels im in a dreami had to leave my home in qld and go live in nsw with married daughter my worlds just collapsed around me. pauline

RE: Post-mastectomy pain syndrome

by candacemm on Fri Sep 17, 2010 08:22 PM

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I had a double mastectomy in June of this year.  One side was radical with the loss of 9 lymph nodes (all clear).  All pain, etc has been equal until about three days ago.  I had expanders put in two weeks ago, to prepare for implants in November.  (yuck, I've never been an implant fan)  Anyway, this searing, burning, horrific pain has begun on the one radical side.  (it's a lump, I guess you could call it.  I do know that my plastic surgeon filled my expanders up to 300ccs during the initial expander surgery.  I must have done something to injure that side but it's unbearable)  I've been eating and sleeping, just came home from our ranch this week and I believe driving (turning the wheel, etc) did something.  The only thing that gives me relief is vicoden.  Clearly, I can't stay on it the rest of my life and had to beg for a few days to get a prescription.  I have a doc appt. next week...

I'm so happy to have found you guys, and so sorry that you are experiencing the same pain.  If you have any resources that you could share with me, so that I can arm myself before my next appt., I would appreciate it!!! 

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

  I'm desperate!

RE: Post-mastectomy pain syndrome

by hester on Wed Sep 22, 2010 12:11 PM

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I have to admit this is pretty depressing news for me!  I had a bilateral mastectomy Sept 1 with DIEP flap reconstruction.  I noticed the nerve pain after a few days and, like you all note, it's the one thing that's really holding me back.  However, for those of you considering having TEs removed, I don't think they're the problem.  My reconstruction is with my own tissue and I'm still experiencing the pain.  My plastic surgeon said for most mastectomy patients the nerves quietly stop and they feel numbness; for the rest of us the nerves flare up.  Lucky us :-(

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