Post-mastectomy pain syndrome

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RE: Can you help my mom?

by Laurainutah on Tue Feb 20, 2007 12:00 AM

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Yes, we have success after two months of agonizing burning:  read my message #20 on this site of post mastectomy pain syndrome.  Mom is doing great.  She hasn't needed a Lortab for a whole week, and she is shopping a gain and wearing her new BRA!  that is huge progress for her.

RE: Can you help my mom?

by Objoyfulvt on Thu Mar 01, 2007 12:00 AM

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WOW! That is fabulous! I'm doing the massage now as well...I hope it is as effective 61/2 years out.....Thanks for being such a wonderful daughter and friend to us all!

Big Hugs for you both!

Lynn

RE: Post-Mastectomy Pain Syndrome

by Marygirl on Sun Apr 29, 2007 12:00 AM

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I am 7 months post bilat mastectomy & immediate DIEP reconstruction, so I don't think the "phantom pain" thing applies to me, but I'm having problems similar to what's described in this thread.  I had skin-sparing mastectomies.  The first couple weeks after surgery my breasts were numb, and then the pain set in.  For months I felt like they stuffed my breasts with gravel.  The pain isn't as bad as it was, but I have daily problems with breast swelling (lymphedema?) and a burning sensation on my skin.  It's only now occurring to me that this isn't normal. Breast massage definitely helps me in the short-term, but unfortunately it's not something I can do all day long.  I'll meet with my breast surgeon and get his advice, but am anxious to hear about the treatments that have worked for others. 

Mary

RE: Answers...

by Laurainutah on Sun May 20, 2007 12:00 AM

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Can you tell me what the self massage is, and what else you do everyday?  My mom is suffering terribly with this, and she puts ice bags on her chest to bear it.  She is on a Neurontin type med as well and Lortabs just to be able to survive.  Where and who is your doctor?

RE: Post Mastectomy Pain Management

by Günther on Thu Sep 13, 2007 12:00 AM

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On 1/3/2007 Kphoo wrote:

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 


hi, my mother has now seven years post mastectomy pain syndrome.  No doctor in South Africa seems to know any cure.  I would like to know if the alpha lipoic acid worked for you.  Thank you

RE: Post-mastectomy pain syndrome

by lafs54 on Fri Sep 21, 2007 12:00 AM

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Hi, I'm new to this board but I am trying to locate as much information as possible relative to post-lymph-node-dissection pain syndrome.  I had two lumpectomy surgeries, one in October and a re-excision in December.  Along with the initial lumpectomy, I also had a sentinel node biopsy.  The surgeon removed three lymph nodes.  After the second surgery, I woke up in a lot of pain.  My cancer (DCIS, Stage 0, high grade) was located very close to my chest wall.  I also had six weeks of radiation.

 I have had numbness, tingling and burning on the underside of my right arm, beginning at the armpit.  The tingling has decreased, but I still have discomfort down the right side of my chest, my right shoulder, and my right shoulder blade - wierd stuff.  My arm pit is still numb and I expect it will remain that way.  About a week after I finished radiation, I experienced pretty bad pain that started in my back, under my right shoulder blade and then seemed to travel around my rib cage and under my breast.  I tried Motrin, per my radiation onc's direction but it didn't do squat.  She had me come in to the office and sent me for x-rays of my rib cage, which came back clear.  We thought it might be inflammation of the cartiledge in the rib cage, costochondrities, which I had many years ago, and she prescribed tylenol 3 with codeine., which I took for a few times and it seemed to help.  I hate taking pills, and I also have a fairly high pain threshold, which may or may not be a good thing.

My surgeon told me some of the pain will probably be permanent.  I am lucky in that I don't let it impede my daily routine.  I have found, though, that the pain gets worse if I am in a car for a long period of time, even as a passenger.  I still get pain under my breast too that shoots around from the back.  I know, compared to other BRCA survivors, I am lucky.

When I went in for my six month mammogram, I thought I was going to scream.  The tech was trying to capture the location where my cancer was.  Well, guess what?  Unless I could remove what's left of my breast and plop it down on the tray, there was no way that a mammogram was going to get an in-depth view.  I was called back into the room at least six times.  Finally, the radiologist ordered an ultrasound.  My breast is still pretty sore in that particular spot, but at least the ultrasound got results.  There is some fluid there that the doctor wants to keep an eye on, so I'll go back in six months for another ultrasound.  I see my surgeon again in two months and I will definitely make it clear to him that ultrasound is the only way to go with the affected breast.

Hugs,

Linda,  (dx. 2006, stereotactic biopsy 9/06; lumpectomy & sentinel node biopsy 10/06; re-excision 12/06; DCIS, stage 0 (comedo), nodes negative; hormone receptor neg.; radiation therapy (30 zaps).

RE: Post-mastectomy pain syndrome

by Leslie912 on Sat Sep 22, 2007 12:00 AM

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On 9/21/2007 lafs54 wrote:

Hi, I'm new to this board but I am trying to locate as much information as possible relative to post-lymph-node-dissection pain syndrome.  I had two lumpectomy surgeries, one in October and a re-excision in December.  Along with the initial lumpectomy, I also had a sentinel node biopsy.  The surgeon removed three lymph nodes.  After the second surgery, I woke up in a lot of pain.  My cancer (DCIS, Stage 0, high grade) was located very close to my chest wall.  I also had six weeks of radiation.

 I have had numbness, tingling and burning on the underside of my right arm, beginning at the armpit.  The tingling has decreased, but I still have discomfort down the right side of my chest, my right shoulder, and my right shoulder blade - wierd stuff.  My arm pit is still numb and I expect it will remain that way.  About a week after I finished radiation, I experienced pretty bad pain that started in my back, under my right shoulder blade and then seemed to travel around my rib cage and under my breast.  I tried Motrin, per my radiation onc's direction but it didn't do squat.  She had me come in to the office and sent me for x-rays of my rib cage, which came back clear.  We thought it might be inflammation of the cartiledge in the rib cage, costochondrities, which I had many years ago, and she prescribed tylenol 3 with codeine., which I took for a few times and it seemed to help.  I hate taking pills, and I also have a fairly high pain threshold, which may or may not be a good thing.

My surgeon told me some of the pain will probably be permanent.  I am lucky in that I don't let it impede my daily routine.  I have found, though, that the pain gets worse if I am in a car for a long period of time, even as a passenger.  I still get pain under my breast too that shoots around from the back.  I know, compared to other BRCA survivors, I am lucky.

When I went in for my six month mammogram, I thought I was going to scream.  The tech was trying to capture the location where my cancer was.  Well, guess what?  Unless I could remove what's left of my breast and plop it down on the tray, there was no way that a mammogram was going to get an in-depth view.  I was called back into the room at least six times.  Finally, the radiologist ordered an ultrasound.  My breast is still pretty sore in that particular spot, but at least the ultrasound got results.  There is some fluid there that the doctor wants to keep an eye on, so I'll go back in six months for another ultrasound.  I see my surgeon again in two months and I will definitely make it clear to him that ultrasound is the only way to go with the affected breast.

Hugs,

Linda,  (dx. 2006, stereotactic biopsy 9/06; lumpectomy & sentinel node biopsy 10/06; re-excision 12/06; DCIS, stage 0 (comedo), nodes negative; hormone receptor neg.; radiation therapy (30 zaps).

Although I have not had the exact procedure as you, I too am suffering with chronic post-surgical pain (after a double-mastectomy and sentinel lymph node biopsy). It has been 9 months since my surgery and my pain is excruciating and intolerable without pain medicine. I take 60 mg MS Contin every 8 hrs, and 15 mg morphine every 2 hrs for "breakthrough" pain.  After consulting with a Neurologist this week, I am now also taking Nerurontin 300 mg once a day for one week, then 300 mg 2x/day for one week, then 300 mg 3x/day for ???  Hopefully that will help.

The medication takes the edge off, but it is ever-present. Because of a recent development of lymphedema, I now am receiving Lymphatic Drainage Massage. The therapist also massages my scar tissue. This may also help alleviate the pain. I remain hopeful.

I hope that you can find some relief for your pain.

Best Wishes,

~Leslie

RE: Post-mastectomy pain syndrome

by Laurainutah on Wed Oct 10, 2007 12:00 AM

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Have you tried gel ice packs?  They really do help.  My mom is about 75% better, in one year of massage morning and night in front of a mirror, watching her hand and telling her body, that "the breast is gone, stop hurting, it is gone", she uses Vit. E oil and Aloe Vera, and moves the scar tissue, not letting it attach and grow to the muscle.  She is also on Lyrica (the new Neurontin) and she thinks it helps her sleep.  Also ambien, 1/4-1/2 at night most nights, because the pain even at the level it is now, doesn't let her relax.  Has anyone tried a vibrator?  I suspect it may work even better.  Mom's vibrator is the kind with 2 big knobs on it, and she needs a little smooth one.  Let me know how you are doing.  Don't give up.  I really think there is an answer or several answers for this.  Laura

RE: Answers...

by Ricamarin on Sun Oct 28, 2007 12:00 AM

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I would also like to hear more about your physiotherapist. I've been living with the bungee cord tightness and pain for 17 years--so the doctor who said it would go away didn't know what he was talking about. A plastic surgeon tried something called  a z-plasty which just made my scars messier. It was supposed to somehow loosen the tightness. Did nothing. The original surgeon obviously thought I was insane. My doctor kind of gave up. I find that Motrin gives me the most relief but I'm not supposed to take it because I had an ulcer 40 years ago. I have had more than enough of this debilitating condition. I would go through any surgery--if it had a hope of helping--and  would travel to see someone who could give me relief. Could you give me the name and location of your person and anything else you think might be relevant? Thanks so much.

RE: Answers...

by lizgp on Sun Nov 11, 2007 12:00 AM

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Dear Pmpsros,
I have a friend who has post mastectomy pain syndrome. Could you supply me with contact information (maybe an email) of your physiotherapist.

thanks, lizgp
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