Post-mastectomy pain syndrome

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RE: Chronic Post-mastectomy Pain

by Marielaine on Tue Jul 14, 2015 01:40 PM

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Hello Rhonda.  I had bilateral mastectomies 6/27/14. I am also at MD Anderson. I am in chronic pain as well. Same as you described in your post. I feel like I am going crazy. The docs just keep telling me it will get better.  It is getting worse. I am beginning to see that there are lots of us out there. YES, I am grateful to be alive, but the pain and changes to my life have been so dramatic. Everyone forgets that we want our lives to go on as normally as we can. This is not something that I can just wish away. It is real. My question to you is have you found anything in the last several months that have helped you regain your life?  I am in physical therapy 2 days a week and it only keeps me moving. Still can't lift my right arm and pain is chronic. I take pain meds and valium for muscle spasms as needed, but they don't make me feel well. I get headaches from meds. I have recently tried reflexology, which is temporary relief, but pain returns almost immediately following treatment. HELP!!! Thanks!!! Maybe I am not crazy after all.

RE: Chronic Post-mastectomy Pain

by mfdanna on Tue Jul 14, 2015 04:38 PM

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Hi Rhonda, my suggestion would be to find a physical rehabilitation doc that specializes and breast cancer patients and survivorship. I found one and found out the physical therapy I was doing was making my condition worse. I used the suggestions and the plan that the physical rehab doc gave for me, stopped doing exercises that would hurt my arms until they were more strong, went for acupuncture, massage, and chiropractic. I am pain free and this is 8 years after my surgery. It took me 3 years to find the right treatment plan and Dr and get rid of the pain medicine and physical therapy that was working against me. I wish you the best of luck. I thought I would be in pain forever...

RE: Chronic Post-mastectomy Pain

by noiram on Wed Jul 15, 2015 02:41 PM

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What is the name of the doctor and therapist that helped you.also where are you located and where are they both located. Thanks. I am sufferering for 6 years and need relief.

RE: Chronic Post-mastectomy Pain

by mfdanna on Thu Jul 16, 2015 12:02 AM

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Dr. Justin riutta, royal oak. Michigan.  Royal oak Beaumont hospital.   If you Google him you'll see his info.   He uses his own therapists there.   

Dr. Daniel judge...chiropractic... Birmingham.  Mi

Nicole Settle... Acupuncture.

Rolfing also helped...

No jaxzercise.   Only exercises prescribed by riutta. 

RE: Post-mastectomy pain syndrome

by Poppy123 on Sat Aug 08, 2015 04:44 AM

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Thank goodness I found this site! I had double mastectomies in 2013 and am now experiencing the armpit pain on the right side and terrible itching. I thought I was going mad.

RE: Chronic Post-mastectomy Pain

by bluegrasslover on Mon Aug 31, 2015 02:14 AM

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hello,

You mentioned  "multi-layer skin folds he left behind." I have the same problem with what looks like swelling at both ends of the incision. When I mentioned this to my surgeon at the 2 week follow up from surgery she mentioned sonething about clevage! Honestly! Have you asked your Dr if it can be repaired to look more acceptable?  I also get muscle spasms on my chest and weird feelings down my arm. I never read anything about post mastectomy. Most articles just talked about reconstruction.

RE: Post Mastectomy Pain

by auntielulu on Thu Sep 10, 2015 08:52 PM

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On Aug 21, 2012 1:46 AM JulieQT wrote:

Hi Mary, i did lymph PT for awhile with lots of deep muscle release and those funny skin bands that athletes use to promote circulation. Helped some...also went to a "rib PT specialist". She was awesome as she also worked alot on my back. I did not have the back flap surgery, jsut the basic implants under, then on top of muscle. Didnt have much time for expansion as both of my expanders broke! HA! I have pretty constant top of breasts pressure-discomfort that Ive learned to tolerate, but hard to recline in chair or ride in car as pressure/rope under breasts is nasty. I also have monthly back massage-I am overdue! Ive gained strength in upper arms and shoulders with weights. And use a med-soft rubber ball-soccer size under-to lie on to stretch.

I use Neurontin, dose varies.

Wonder what dose Neurontin works for best for users out there!?

PT/strengthening/exercise and massage lifelong I think..

Hi I am 3+ years old from double masectomy and am having pain right at rib cage - right under my implant - or where my bra rests around my rib cage.  I have been told its muscular. The pain doesn't hurt when I breathe, only when I press on it.  It's hard to stretch that area.  I just don't know what to think and am in fear of more tests.  Anyway, I'm curious about your "rib PT specialist".  Thank you!

RE: Chronic Post-mastectomy Pain

by capitalk100 on Wed Sep 30, 2015 03:19 PM

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I read with interest your comments on tightness to back after mastectomy reconstruction. I had this operation 3 years ago and am still in constant excruciating pain. I have now been diagnosed with osteoporosis. I am wondering if my tightness of the back could have caused this please? Please advise if possible.

RE: Chronic Post-mastectomy Pain

by mfdanna on Wed Sep 30, 2015 05:02 PM

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On Sep 30, 2015 3:19 PM capitalk100 wrote:

I read with interest your comments on tightness to back after mastectomy reconstruction. I had this operation 3 years ago and am still in constant excruciating pain. I have now been diagnosed with osteoporosis. I am wondering if my tightness of the back could have caused this please? Please advise if possible.

I'm not sure if osteoporosis would have caused this. I don't think so just based on my experiences as a patient.   I have that too from chemo/loss of hormones.   Are you seeing an endocrinologist for your osteoporosis?    I wonder if you have something wrong with your shoulder rotator cuff...

RE: Chronic Post-mastectomy Pain

by capitalk100 on Wed Sep 30, 2015 07:14 PM

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Hi there, thank you so much for replying so quickly. I had a bone density scan and the result was a diagnosis of osteoporosis. I have been given medication for this, but I have just had an MRI scan and awaiting for results from this. So hopefully hospital will be able to give me a more in depth results. In answer to your question, no I haven't been referred to an endocrinologist yet! I believe this website is from America isn't it? I am from England and appear to do things differently. Wishing to well. Kathy X
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