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Comments on Post Mastectomy Syndrome
The more of us who speak out the more may find
relief and MAYBE just MAYBE we may alert doctors to do something to prevent
whatever damage is occuring so that women don't needlessly continue to suffer
Barbara
I have times when my armpit goes into a spasm or charlie-horse. One
happened just last week as I was exiting our car to go
out to dinner with my
husband. It is always extremely painful and takes several
minutes up to 10 for
it to pass. The spasm is always on the lumpectomy side
under the same arm
that I had a radical lymph node dissection. I have
lymphedema in the same
arm. I get them every couple of months.(No one ever asked
me about this
before!) My husband stood with me while I quietly tried
to press against the
side of the car to counter the pressure on the twisting
muscle...not easy to do in
an armpit!
Claudia
... it's a feeling as if the muscle is going into spasm. I guess a
charley
horse of the breast would be the closest description. It
occurs either
spontaneously or by changing position eg bending from the
waist down, going
from laying to sitting. For those who get it it can last
moments to an hour and is
very very painful.
< <(No one ever asked me about this before!) >> Claudia, I've
been asking
med professionals about this for over two years now. It
just dawned on me to
ask on this site to see if other women are experiencing
this. It is
extraordianarily painful!!! as you unfortunately know
too, I have had them last
as long as 1 hour. How long after surgery did yours
begin? I know women, as
myself, who had this start several years after surgery. I
have not found
anything yet to answer what causes this. I, as you,
stretch in the opposite
direction or will even have to bend over sometimes the
pain is so severe. Other
women take pain or anti inflammatory meds to no
satisfaction.
I wonder how many more women have this after effect?
Barbara
Alexandra,
I certainly know all too well the chronic pain nerve
damage can do--having
experienced it for 9 years. It was not taken seriously
and only recently treated.
I tried everything--acupuncture, round and round of
physical therapy, pain
meds. Finally neurontin seems to help. I remember being
in a room of about 50
survivors--about 10% of us experienced this. Unfortunately
the medical
personnel around us could only give emotional support
(worth something at a
time when I was ignored). For me, it took a good pain
specialist to treat and
take seriously.
I think it was no one's fault, etc. I just wish I had
known what it was for years
and found relief a bit sooner.
Anne
(October 27, 2000)
Alexandra,
You can quote me.....however, in the last few days the pain has
again become almost intolerable. I do not know if it is exaccerbated by
some PT I did or if I need to up the dose of neurontin. The neurontin
does help. I haven't looked at your links yet, but look forward to doing
so.
Anne Fonfa
Define spasm please. I have difficulty taking a deep
breath and that seems to
increase over time. Especially since I recently went into
(natural) menopause).
If I lie on my side, which I am used to doing, I actually
have to change position
to take a deep breath. (Double mastectomies, one year
apart).
Ann Fonfa
(October 27, 2000)
I have experienced discomfort, many annoying and irritating feelings in my
chest after two mastectomies (one year apart). I tried rubbing the air at
the location my breast or nipple would have been.
I had seen something years ago on TV about dealing with phantom limb pain-and
this technique was used. There is also a concept of rubbing the opposite
side or looking in a mirror while rubbing.
It sounds odd, but it works for me. I am able to relax the area, reduce the
strange sensations, and sometimes even achieve a kind of sexual feeling.
Ann Fonfa
My mastectomy was in March, 1998. Because of the pain
I can only wear very loose clothing. I have adopted the Amazon body image.
I am not willing to be in agony because of a bra, prosthesis or anything else that would rub against the skin. I too know the "porcupine".
Sometimes when I am on a computer, I will get stabbing pains in the shoulder and then my arm and hand go completely numb. Somedays it hurts to breathe.
After more than two years of pain an oncology nurse listened to me.
When I went for an appointment with my primary care physician, he knew all about post mastectomy syndrome.
It is my hope that the breast cancer specialists will wake up about this issue! I personally never
thought much of the concept, "Suffering is good for the soul".
I also told Ernest H. Rosenbaum, MD about this under reported syndrome. I am being treated
by Nancy Rakela, LAc, OMD. Acupuncture is very helpful.
Alexandra Andrews
I continue to have intermittent shooting pains in my left breast one
year after lumpectomy, in the scar area. The pains did NOT start after
surgery, but only after the first few days of radiation (about two
months later). Also there is an area of my rib just under and to the
side of the affected breast that still hurts to the touch. No one has
satisfactorily identified the cause of the pain, but I have been seeing
an osteopath, who works on breaking up what she identifies as adhesions
throughout the affected area, so the pain has decreased. My left breast
is still warmer to the touch than my right breast, and slightly
swollen. I have had mild chest wall lymphedema, despite having had only
the sentinel node removed.
Good health to you,
Andrea
I have the type of pain you all
seem to be experiencing.
It seems to involve the area about two/thirds of the way
up my mastectomy
scar and continuing to the top of the scar into my
axilla. Also the pain will
extend around my side from the scar and towards the two
scars where drains
had been inserted. This whole area seems to be affected
when I am tired or
have been doing something I should not that involves a
repetitive motion. I, too,
had fairly extensive surgery with my mastectomy being
more radical than
modified radical. On top of that this area was also
radiated. However, there
does seem to be only minimal scar tissue there like that
which has been
mentioned. I had a lot of myofascial release done on this
area postop because it
affected my range of motion in my right arm.Don't know
just what all of this
has to do with the pain that comes from time to time.
This started about
18months after my surgery and continues through today.
The only thing that
seems to help me is to warm the area with my hand, a
warmed towel, or some
source of heat. Looks kind of funny if I am out in public
or if I have to go to the
ladies room and do this and someone comes in and sees me.
Anyway, I
mentioned this to my surgeon and he offered an Rx for
pain meds as needed,
but since heat is what I have found to be the best Rx, I
told him not unless it
gets worse than this. He told me that he has had other
patients complain of the
same thing from time to time and that different patients
have different remedies
with some of them going as far as pain meds. Sooooo....I
guess whatever
works is what we need to do and from my information, it
looks like each have
their own remedies that work.
Lois
Hi darlin' girl,
I empathize with all of the others who have commented here.
Add me to the list of those who suffered with creepy crawly nerve
sensation and charlie horse cramps that take ones breath away with the pain.
I found that immediately after the surgery I could not bear to be
touched even lightly in the area above the scar. My surgeon's nurse
advised placing my hand over the sensitive area many times a day and
increasing the pressure gradually until after a few months I could
actually gently rub the area. The idea here is to give the poor cut
nerve endings something else to concentrate on rather than trying to
rejoin up to another non existent nerve. Eventually the cut nerve
endings fray and die down and the pain is less. The anti-convulsant med
Neurontin helps immensely. For those with severe lasting nerve pain
(over a year) I have been told that there is a surgery which will
desensitize the area. Never tried that myself but it is something for
people to ask about. It's been 3 years for me and I must say that it's
only very occasionally that I get the stabbing charlie horse type cramp
now. The creepy crawly sensation is totally gone so I don't jump or
flinch anymore if touched.
Lee Smith
You may have post-op cording....I have seen a few. Pain can radiate down arm
and into palm almost (especially if arm is in a certain position). This is
treatable and does go away.usually the nerve damaged/destroyed during mrm is
the long thoracic and most have numbness in axilla and their side. If you have
cording, a therapist can treat as follows: moist heat followed by gentle range
of motion and stretches. Light wrapping helps. Should go away @6-8 weeks.
Have your drs. said what other nerve it could be? Let me know.
Thanks and good
luck
Nancy
Finally, after 2 1/2 years of pain, I have found a website that describes EXACTLY what I experience! Thank you
so much! I too have been on the opiate path with no real pain remission. Tried the injection of steroid into the
site but it hurt so badly I yelled at the doctor to stop....then I found another pain specialist. Now I am on
Neurontin, 3200 mg. a day along with an antidepressant, Effexor, 50 mg. a day. I have insomnia too. I feel sort
of drowsy and I walk unsteadily but the pain is alleviated. I try to go without the mediations to see if it is
better, but cannot go more than 5 or 6 hours then have to take meds. My Neurologist said I will probably have to
take them for the rest of my life. So, until there is a better way to treat chronic post mastectomy pain caused
by nerve damage, I will keep on.
Thanks,
Glenda Hall
Two and a half years ago I had a left mastectomy and lymphectomy. I had the
usual, intermittent numbness and burning sensations. I also have the
sensation of a "phantom breast"--not too annoying in itself. What is
annoying to the point of being almost unbearable are intermittent attacks
of itching. For several nights running, I am able to sleep only in very
brief naps. I have used ice, menthol ointments, pressure, vibrator all with
minimal relief. My doctor (the surgeon who performed the mastectomy) says
that "what you have after a year is pretty much what you have to live with."
I do have as much as three months with no symptoms at all. On the plus
side, after a bout with itching, I have less numbness. Do you know anyone
who has found relief from these symptoms? I would love to hear from her.
Thanks for providing this forum. I have searched the web for help and
finally found your site.
Yours,
Jean Raddatz
I too, have have had recurring pain and been told it is in my head and to
relax and quit thinking about it, I had a MRSA infection at the surgical
site after an lumpectomy. Presently, I havea raised spot about 4cm by .,5 cm
which the Dr. says is a tumor which is benign and left it open to drain.This
just goes on and on. Thanks for the information about neuroma. I will check
it out. I have had pain, swelling and numbness in the right arm, same as
the breast cancer. I think it is connected. What did they do to correct the
problem? Is it better? What type of specialist did you see? I would
appreciate any information.
Nina Williams
Thank you!! I will have two more MRIs to insure there are no other problems.
I copied the articles to taketo my DRs. The pain has worsened down my right
arm and hand. They agree it is a nerve . Now the treatment remains to be
seen. Again, I thank you. Glad to know there is someone willing to listen
and knows what I am talking about.
Nina Williams
Post Mastectomy Syndrome
PostMastectomy Pain Syndromes: A Surgeon's Perspective
Persistent Pain after Breast Surgery
MRM Nerve Damage
Mastectomy Pain Advice
Nerve Pain
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