Post-mastectomy pain syndrome

On 5/17/2005 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!

I'm new to this board... so I'll just say what my situation is...

 I had Hodgkin's Disease in 1986, and again in 1993... and was diagnosed with Stage 3 b.c. in 2007... with 9 positive nodes.  I've had bi-lateral mastectomies, 6 cycles of TC chemo and substantial radiation.  I'm on Arimidex now... have been for 16 months...

 Itching is a huge symptom of Hodgkin's - was present both times that I had and occurance.  Now, almost two years post mastectomies, I have itching and nerve 'twinges' in my chest area.  Mainly on one side, away from where my tumor was, and near, but not on, the scar from the breast removal.

I must admit that it was a relief that others are experiencing the nerve pain and twinges following mastectomies or other surgeries to the chest or axilla areas... at least I'm not freaking out so much about it maybe being the Hodgkin's coming back.

 What I'm experiencing is substantial 'twinges'... like a sharp poke... and a hypersensitivity of the skin where it starts itching if I touch it and sometimes even if I don't.  If I stay REALLY still, it will stop, but if I touch the area... sometimes I can't help just laying my hand over it... it starts really feeling tweaky.

 I'm going to try using Castiva, which has capsaicin in it, when I go to bed at night - which is usually when I really suffer with the nerve twinges.  I just put some on right now, and it seems to have helped.  It definitely feels like 'phantom limb' pain... it seems to come from the breast(s) that are no longer there.  I'll also try the Benadryl.  I'd like to learn more about the OTC alpha lipoic acid...

I'll check back in with a progress report.  In the meantime, it's so great to make this connection with other ladies who are experiencing this... and hopefully we can all help one another find answers...

On 2/1/2009 4Evalive wrote:

 

On 5/17/2005 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!

 

Please get a referral to a physical therapist who is familiar with myofascial release and soft tissue work.  The tightness is scar tissue that is growing and becoming more solidified from the scraping and cutting of the mastectomy.  If not taken care of can even cause boney changes, posture and shoulder pain and shape.  I was not referred by any of the docs that took care of my mastectomy and reconstruction.  The only reason I am aware is because I am a speech therapist and work with physical and occupational therapists.  There is hope for pain-free and drug free living post-mastectomy.  Good luck.........God bless!  Eva

Eva,

 Thank you so much for the advice!

 I just got a " clean bill of health" from my Oncologist. After 4 years, I'll start seeing him once a yer now.

 I also have the tightness , and pain from the nerve damage. I asked if the pain, will ever go away. and he said  " Eventially" I was Dx'd in 2004 w/ stage 3 Breast Cancer and then again in 2007 with stage 1 in the other breast. I opted after the 2nd Dx's to have the Bi-lateral mastectomy.

 And I know exactly how Sazzy feels. I also opted out of reconstructiuon right after the surgery.

 Then, about a month after the surgery, I had the MRSa infection and they had to open me back up and clean everything out.  I am juist now healing nicely. After having a hole that was 2 inches by 1/2 inch that refused to heal.

 Although the scars are a daily reminder of the cancer. I do appreciate life a lot more. And I look for forward to day, that I can dance at my grandson's wedding!

On 3/15/2004 Linda D. wrote:

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.it is

hi

it is interesting to note that after my surgery i had relatively little pain until some 2 years later now i am experiencing sharp shotting pain in and around my scar.  I was recieving herceptin and i am wondering would this drug have masked this pain.  My surgeon and gp are not very interested i classify myself as very lucky i had no lymph gland involvemnt as i was detected relatively quickly.   what do you do?????

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

Hi Sandy-

Great to hear from you despite the circumstances.  When I read you plan to have them removed I panicked a bit.  My oncologist and I explored these options and she said that because the pain I am experiencing is nerve-based that there would be no guarantee that removing them would solve the problem.  She said there isnt much data out there to support doing this.  If I knew removing them would relieve the pain and get me off all these meds I would but apparently there is no guarantee.  And honestly the last thing I want to do is go through surgery again, recut the nerves, and potentially still have the pain but no breasts.  I would definintely ask your doctor if there is any research to back up removing them.  My experience here in Philadelphia with my oncologist has been really good so I am trusting her to guide me on this.  Right now I am at 1800mg of Neurontin/ 600mg 3X a day (Gabapentin) and 30mg of Elavil (Amitriptyline) at night.  Increasing the Neurontin has helped and I am basically pain-free...unless I forget my afternoon dose of Neurontin.  but I am not happy to be 37 years old and on all this medication.  It is maddening.  I am happy to hear from you because I feel like for the most part they dont know what to do with me.  I am very interested to hear more from you.  Where are you living?  Are you on any medications? Please respond back when you can.  Take care, Lisa

Dear Lisa,

Thanks for your message. Yes, its a difficult one, no guarantees that removing the implants will bring any relief. Everybodys situation is different. However, im so desperate that I am going to give it a try.(there is one lady on this forum called Trudie that has an almost identical story to us. She had her implants removed and had instant relief from the tightness).But I know I am taking a chance...but I cant face living like this anylonger. My pain has eased off almost completely (I was on amytriptyline for 3 months and also used a tens machine) but for me its the crushing feeling I cant bear.Im seeing my surgeon on 11th May to discuss everything. He seems to think that I should get relief from removing the implants. I will ask him why etc and get back to you. I did have a severe case of capsular contracture with my expanders and its feels like im getting the same with the implants.My surgeon said that he thinks my body is rejecting them. I am sad at having gone through so much to still have breasts and it looks like im going to lose them but I have no choice. I will keep intouch and update you. By the way I live in London, UK. Where are you?

Best wishes,

Sandy x

On 7/7/2005 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.

Dear Pmpsros,

I am too suffering symptoms of PMPS. Im interested in where you see your therapist? Im based in London, uk.

Best wishes, Sandy x

Hello

Just wanted to say how it helped to find this message run. I have had awful pain since my bi-lateral masectomy in Aug 08. bunji cord tightness  burning................nothing has helped. I am just glad I am not alone the Doc's treat me like it is in my head. I had implants placed at time of surgery and had them removed 8 weeks later because of the pain. It didn't help but I couldn't go thru expansion if it would have increased my pain so............ I go again to the Doc today I am going to a pain management next week and will try myofacial release. I am also going back to my chiropactor next week. I have tried PT OT and a self exercise program to no avail. I am going to get some alpha lipic acid. Also going to start with a massage therapist. I am at the end of my ability to cope with this constant pain. So it is time to move to a different treatment plan mostly I have been just waiting for it to lessen.

You all have given me some hope. I don't feel so alone or crazy this am.

Thank you all

Hi,

I'm new to this board.  I was researching information on this topic for my mom.  Approx. two years ago she had a mastectomy followed by chemo.  She just finished herceptin and is currently taking arimidex.  In the last two weeks she's developed extremely painful stabbing, throbbing pain around the incision site, near the ribs to around her back. Mom says this pain is worse than post surgical.  Dr. is sending her for an xray of the ribs and bone scan. 

Thus far her Dr. has prescribed a topical cream that seems to make things worse.  She's been taking an over the counter pain reliever that doesn't seem to help either. 

Have you found anything that helps? 

 Does anyone have any suggestions?

She's wondering why all of a sudden she's developed this pain?  What's changed.

Thank You!