Post Mastectomy Pain Syndrome

thetrumumshow

Hi from England Ladies,

I'm posting this in several places so as many people as possible read it. I've been in constant pain since my failed recon for DCIS & LCIS in July 2008 to the point where I've been told by several Surgeons that ANY further surgery is out of the question for me. On Thursday I found this on the Internet

http://news.bbc.co.uk/1/hi/health/7844435.stm

I certainly wasn't warned this could be a possibility. Was anybody else? Had I known then what I know now, I'd have chosen a different route, possibly increased surveillance and not surgery....

Trudie.

Hindsfeet

Trudie, What do you mean failed reconc surgery? Have you been dx with regional pain symdrone, rsd? The reason I asked is because I was dx with it in my right hand after breaking my wrist. I am at high risk for it in other parts of my body as it can travel, and another injury can cause another pain symdrome.

Since I have rsd or a pain symdrome for life, I've learned to manage it without drugs. I have limited motion in my right hand and wrist. I've learned that stress exaserbates it ... causing pain and burning sensation.

I've been thinking about the pro's and con's for a mx to reduce my chances for a bc recurrence. I definately considered the pain symdrome as one of the negative factors. Already, when stressed, I feel burning and pain sensations in my lumpectomy scars.

With this said, I want to add that this isn't the case for the majority. To add that stress around surgery or any invasive medical procedure can be a precursor to vulnerability to having a pain symdrome problem. Believe me this problem is real and can be devistating.

thetrumumshow

Hi there,

I had a bilateral mastectomy and immediate reconstruction with tissue expanders in July 2008.  The pain that I'm in now started as soon as I woke up from the surgery, a constant tight band feeling, like I'm weating a bra that is 6 sizes too small and riding up all the time.  Despite doing all of the post-op Physio religiously the pain never left me and after 13 weeks of agony my Surgeon asked me if I wanted the expanders removed so of course I said yes!!!

Initially the pain disappeared only to return within about 6 weeks and I've had it constantly since despite trying many different pain meds, acupuncture and Botox injections into the Pectoral Muscles.

Now the Surgeons tell me that I won't be able to have further reconstruction due to this pain.  Incidentally I've had previous surgeries in the past with no problems with apin agfterwards so everyone is at a loss as to why this has happened.

Trudie.

Deirdre1

Trudie:  I wouldn't stop with these Surgeons - I would do what you are going (studying and learning what the pain is caused by)and when you are ready contact many breast surgeons to see if any of them can help to relieve this AND allow you to reconstruct if that is what you still want.  I wish you the best and I hope you all find relief!  Best, Deirdre

Hindsfeet

Trudie, I am so sorry you are going through this. You said it feels like a ban squeezing you. Do you have burning sensation and your skin bright red or purple? These are signs of a pain syndrome. Swelling as well. It takes years sometimes to heal from a major trauma like a mx. The body doesn't know the difference when being cut to being stabbed.

I agree with Deirdre, find a new doctor.

thetrumumshow

No, no burning and no skin discolouration so they're pretty certain it isn't a pain syndrome....  I've now had oopinions from 4 different surgeons and with the NHS system it's a bit different.  We can't just go and get another opinion without being referred...

Deirdre1

Ohh I see Trudie, and this is a bit extreme but can you pay out of pocket for a surgeon that you have done your own research on and have found him/her to be an expert in this area?  I know you can do something similiar to that in Canada (similiar system), if that is possible then go back armed with your new surgeons opinion and then they would be compelled to proceed with his/her recommendations (well maybe not compelled but encouraged).  I don't know if that is possible or not for you - but even though we have a private industry here (in the US) we (or many of us) are under the policies guidelines so if I want to see a doctor that is "out of policy" I have to pay out of pocket.  Many times that has been worth it because I can then use that information to gently suggest that my own doctor do things "differently".  I have had chronic pain and if you I can't get relief from your own doc's I have often paid out of pocket and gotten the advice and treatment of a doc that might not have been available to me otherwise.  I even took out a loan with my revision breast reconstruction because I thought I would have trouble with my insurance company.. it took time but they did pay back some of it but in the mean time I got what I needed and even if I had to pay off the loan without their help it would have been worth it for the job that was done, the pain and anquish that was relieved.  I know it's a very bad economy but and perhaps this isn't possible, but if it were me I would not let the NHS interfer with my getting treatment - even if I had to go outside the country.  And please know Trudie, I am not saying this lightly I have had to consider leaving my state and actually leaving the US very recently for treatment..  Good luck and I hope you can come get some sort of relief and soon!!  Best, Deirdre

Deirdre1

This actually brings up a point I would like to make.  So often today we (patients)  are discouraged from going forward with new treatments better care all because we are locked into a NHS or an insurance policy.  Yet if we needed a car (or other common item in out world) we would, some how come up with a way to pay for it.. This is our health and sometimes we just stop our pursuit of a better life because some agency tell us we have to.  Well my own experience is that we have to give more weight to our own bodies and health.  If you need something that insurance (or NHS) won't cover step over them any way you can to get relief of pain or better treatements etc.  We have gotten so use to these agencies being in our way we don't even see that there is a way around them.  Of course it will cost us - money is always involved at some level (morally maybe it shouldn't I'm not suggesting we try to figure that out here)!  I guess what I am saying is that we are worth as much as a car, or even a house - If there is something out there that can make your physical health and/or mental health better pursue it on every avenue..  You are all worth it!  Deirdre

Anonymous

Trudie-  Thank you for sharing your experience with us.  This is something I wasn't aware of and just one more thing our doctors don't prepare us for.  I'm sorry you have had to deal with this.  I have fibromyalgia so I understand how exhausting and frustrating it is to have to cope with chronic pain.  It can really take over your life.

You said you posted this in several locations.  Have you posted on any threads where someone is trying to decide between lumpectomy and mastectomy?  This definitely would be good information for them to factor into their decision. 

thetrumumshow

Yes, we can pay out of pocket to get to see Surgeons/specilists her in England but still need to be referred by our own GP.  Sadly, I can't afford to pay as I've had to give up my job, I was a Nurse, due to the constant pain...

lymphtherapist

I would recommend seeing a lymphedema therapist who is experienced with manual lymphatic drainage, myofascial release techniques, kinesiotape and use low level laser therapy.  I treat many patients with PMPS and they get immediate relief.

thetrumumshow

Thanks for that information Lymphtherapist.  I will be ringing the Lymphoedema team at my hospital today as they have never offered anything apart from Simple Lymphatic Drainage which hasn't helped.  I'm very interested in trying  myofascial release and low level laser therapy.  I hope they can offer it to me on the NHS.