Post-mastectomy pain syndrome

Please would you contact me I am 4 years post mastectomy and have chronic high grade post-mastectomy pain. I have sought pain clinic consultations from both Royal North Shore Hospital and Prince Alfred Hospital Sydney, nothing has worked and I don't want an in-plant and spinal stimulator which seemed to be the option of last resort.

many thanks

Anna

Hi,

 Please read this link:

http://www.mayoclinic.org/news2003-rst/1733.html

I heard from another suffer that she tried over the counter alpha lipoic acid and she had great results.  I am going to buy some today.  I just found out about it.  Lets pray its works.  Good Luck

Peace,

Kphoo 

This is very exciting news about alpha-lipoic acid! I just started taking it when I read your message. Would really love hearing how anyone who is taking is doing.

What dosage are you doing?

I'm taking 600mg., seperated into 4 doses a day. I, too, have been a long-term suffer with severe pain. Have tried just about everything. Six and a half years.

 

Hi, the situation sounds more hopeful for you than for others.  My mom has suffered 3 months with the burning chest, her surgeon said "I think you are addicted to the pain pills".  She can get by with 1/2 Lortab 5morning and night, but we have to find a new doctor to get them.  What massage and treatment do you do?  Do you use ice?  She says it does help temporarily..  Do you use the alpha-lipoic acid?  We live in Utah.  What can we do on our own? 

Definitely massage! I slept thru the night for the first time...at FOUR months out after getting a massage!. Right now is the time to help her muscles release. Otherwise, you can be holding onto the pain with 'memory musculature'.

Hope you know massage. Learn fast. Because, if I could have had it 3 times a day...Who knows...

Sweetheart, You're as much of a sweetheart daughter as my own is!

Will let you know how lipoic is working for me. At this hour, I'm almost as bad as your Mom. She has 'The Branding Iron". Sure hope she lets go of 'The Razor Blades'.

I've just got The Iron tonight.

Bless you, your Mom, and Me!

Lynn

PS...I can't do it...get paranoid, but there is only one thing that touches neuropathic pain. Marijuana.

I had my body back for 15 minutes before my husband of 32 years and my closest friends were in a conspirasy...LOL!!! Walls running goop. I quit, as a Hippie, when I was 18. Still can't do it, but some can. And, it has definitely helped them.

I was told by one woman to toke small. Didn't work. Just applying wine. Narcotics DO NOT TOUCH neuropathic pain. Will dull your mind to where I was drooling and screaming at the same time. Enough now!

We will get through this!

Love, hope, and courage to us all!

 

On 1/28/2007 Objoyfulvt wrote:

Definitely massage! I slept thru the night for the first time...at FOUR months out after getting a massage!. Right now is the time to help her muscles release. Otherwise, you can be holding onto the pain with 'memory musculature'.

Hope you know massage. Learn fast. Because, if I could have had it 3 times a day...Who knows...

Sweetheart, You're as much of a sweetheart daughter as my own is!

Will let you know how lipoic is working for me. At this hour, I'm almost as bad as your Mom. She has 'The Branding Iron". Sure hope she lets go of 'The Razor Blades'.

I've just got The Iron tonight.

Bless you, your Mom, and Me!

Lynn

 

Thanks so much for writing back.  When you massage do you pull up the skin from off the chest wall as part of the massage?  Or just regular massage all over the chest and underarms and shoulders?  Have you tried using the mirror technique, standing close in front of a mirror and running your hand over and over where your breasts were, and watching your hand carefully (the mind must be engaged).  I read where one lady did this and it told her brain the breasts were no longer there and stopped sending nerve messages or growing and trying to attach to "gone" tissue.  Her pain disappeared.  Mom is going to start that tomorrow too.  I actually saw this on Discovery channel about amputation and how they handle phantom pain.  I lost a finger as a 12 year old and remember phantom pain very well.  It went on for about 2 years.  It was burning, grinding and twisting pain.  This mirroe trick on the brain is supposed to stop it fast. I 'm a nurse and I have an aquaintaance I spoke to today who happens to have a friend over the breast cancer division at John Hopkins University. (They have 1000 mastectomies a year there).  She will email her and find out what the latest and greatest treatments are for this and I will post it when I get it .  My mom is 75 and used to be able to run circles around me ,  She wants herself back and I will do whatever I can to help her. 

Wow! That's a new one for me! I was talking about a full body massage to relax the muscles surrounding the pain.

I will be so interested in what you discover as the latest and greatest...What a great daughter!

I want my life back too. And, if your Mom ran circles around you, that's how I was as well.

Here's a cheer to us! And, gratitude for loving and wonderful  daughters!

I am fortunate to have a daughter as lovely as you....

Lynn

Any news yet? Any successes yet?

It's been just two weeks on alpha-lipoic acid, but I had one of the best days ever yesterday. Of course, I then overdid a bit, but am hoping that in a couple of days I can report in that it is working.

Forgot to do the mirror thing. Will do it right now!

 

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.

 

Hi, my mom got the horrible burning pain across her chest 1 month post double mastectomy.  We tried ice (helps  temporarily), going nearly naked (feels much better with no material on it), and Percocet and Lortab helped the most, but the surgeon refused to give her any more.  So guess what.  She is much better now...she has been doing the same treatment amputee patients are told to do to get rid of their phantom pain.  Rub the area that hurts, the missing breast area and underarm in front of a mirror watching your hand in the mirror (telling your brain there is nothing there to enervate, to turn off the nerves, talk to yourself out loud or in your mind saying the breast is gone, massage it well).  She uses Emu oil, and I don't know if that has anything to do with it.  She does it in front of the mirror night and morning and after the first week, the pain was dramatically reduced.  She had it so bad for 2 months before she started this.  Try it.  The nerves are trying to re-enervate the missing breast and they respond to this.  Tell your brain to turn them off.  It is truly amazing.  She did not take nortriptyline, or anything else.