Post-mastectomy pain syndrome

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RE: Answers...

by rose2617 on Sun Feb 21, 2010 08:28 PM

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Pmprsros, Can you please give me the name of your Doctor so that I can locate her thesis about PMPS. I have been suffering for 5 months now after bilateral mastectomies. Neurontin did help but the side effects were terrible. It kept me from being able to read or drive. Went off of it and the pain is becoming unbearable again. I also just recently stopped physical therapy thinking that it was making it worse. Had 30 PT appts with no improvement other than good range of motion. I am in the Chicago area and did not get any help from two physiotherapists I saw. So I am very interested in knowing if your doctor published. Also, would be interested in details of the massage and exercises you found helped you. I have been doing massage/lympadema exercises since my surgery and the pain continues on.

RE: Answers...

by noiram on Fri Feb 26, 2010 01:35 PM

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does the therapist message the areas do they say anything about scar tissue or adhesions

RE: Post Mastectomy Pain

by noiram on Fri Feb 26, 2010 02:15 PM

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On Jan 20, 2009 12:00 AM wallylarkin wrote:

hi to all-

I had a double mastectomy with reconstruction in january of '08.  for 6 weeks following the surgery I had intense pain until finally a nurse practioner in the surgeons office said it was nerve pain.  I started 30mg of Elavil that night and within a couple of days the pain decreased in half.  they then put me on 400 mg of Neurontin.  I also continued taking a narcotic pain med.  this worked for about a year until I became a bit to dependant on the narcotic.  I got myself off of it and am now revisiting some pain :(  my doc increased the Neurontin to 900mg but that hasnt helped much at all.  my pain is a constant awareness....a sensitivity of these bags in my chest.  I have trouble getting to sleep at night.  it feels like a tightness but its mostly a constant feeling of the implants in chest.  I know its nerve pain but I wonder about whether to get the implants out.  I just want off of these medications.  if anyone has any info or advice about a situation such as mine I would really appreciate it.  none of the docs seem to know what to do except medicate.  Help!

 thank so much.

warmly,

Lisa

i had a double mastectomy with expanders the pain was so great i couldnt get them filled  eventually after 5 months i had them removed if anything the pain is worse i am now looking to find out what is causing my pain adhesions or scar tissue or nerve damare if it is scar tissue i will try serracor nk and serra rx 80 by biomedic labs if that doesnt work i will try special message therapy by clear passage therapies i hope something works

RE: Post Mastectomy Pain

by maggigioffre on Sun Feb 28, 2010 11:50 PM

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I am listening to so many of us that describe the same complaints, heaviness, tightness in chest, sometimes my pain takes my breath away, tingling, my breasts are highly sensitive to clothes are having anything touching my breast area.  My name is Maggi Gioffre and I live in Pittsburgh, Pa.  No one in Pgh. knows about or believes that PMPS exists.  I am looking for a neurologist to help me treat the cause, not the symptom.  Surgeons will only want to cut you again.  I have been advised by a Dr. William Macrae in the UK to not fall for this.  I know that I have this pain because my useless surgeon damaged my brachial intercostal nerves. I am looking for drs. anywhere in the US that actually treat what I have. I have been to too many pain clinics.  I have tried the following meds:  Lyrica, Neurontin, Elavil, Cymbalta (high dose of 120 mg) this works the best, percocet (this helps too, duragesic patches, lydocaine patches.  Other approaches:  physical therapy but I stopped because no one there really knew what I had; acupuncture; hypnotherapy; hands on healing; reiki, psychotherapy.  My doctors all tell me that I am depressed, that this is my problem.  If you know of a neurologist that treats the cause of PMPS, please send my way.

Maggi

RE: Post Mastectomy Pain

by nballant on Tue Mar 02, 2010 04:55 PM

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Dear Sandy x -

I'm wondering if removing the implants helped with the tightness.  I just received devaistating news from a pain doctor (referred to by the mastectomy surgeon) - that there is really nothing he can do for me except for drugs (he said he didn't really even need to see me).  i had a double mastectomy 5/09.  My plastic and the 2nd opinion general surgeon says that removing the implants wouldn't help - another surgeon says it will.  I'm so confused and angry. Like others - no one told me that this pain/tightness was a potential outcome.  I so regret my decision to have a double mastectomy - and angry with my oncologists and surgeons for recommending it without actually looking at the biopsy report (turns out that my <1 cm small tumor was tubular - very benign form of BC that doesn't kill).  While they were all celebrating the fact that "they got it all" and what a success my case was - I'm left in pain and disfigured.  Anyway - I'm reading this on the day after the news, and just needed to vent.  Back to my question - did removing the implants help?    

RE: Post-mastectomy pain syndrome

by tommy44 on Mon Mar 08, 2010 07:26 AM

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I have had  PMPS for over 2 years and my doctors still willnot acknowledge it

RE: Post-mastectomy pain syndrome

by finger1 on Sun Apr 11, 2010 01:45 AM

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I had my surgery three weeks ago and have had much the same experience as your mom. I can't get to see a doctor so no pain killers. I'm on my own so  I had MSM It's a natural anti inflamitory you can get from the health food store I used the cream I never thought to ask my husband to buy me the pills as well to see if they would be effective as well but the cream gives me some relief. I also press gentlly but firmlly on my chest where ever the pain is I also massage the area lots.

RE: Post-mastectomy pain syndrome

by finger1 on Sun Apr 11, 2010 01:45 AM

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I had my surgery three weeks ago and have had much the same experience as your mom. I can't get to see a doctor so no pain killers. I'm on my own so  I had MSM It's a natural anti inflamitory you can get from the health food store I used the cream I never thought to ask my husband to buy me the pills as well to see if they would be effective as well but the cream gives me some relief. I also press gentlly but firmlly on my chest where ever the pain is I also massage the area lots.

RE: Post-mastectomy pain syndrome

by finger1 on Sun Apr 11, 2010 01:45 AM

Quote | Reply

I had my surgery three weeks ago and have had much the same experience as your mom. I can't get to see a doctor so no pain killers. I'm on my own so  I had MSM It's a natural anti inflamitory you can get from the health food store I used the cream I never thought to ask my husband to buy me the pills as well to see if they would be effective as well but the cream gives me some relief. I also press gentlly but firmlly on my chest where ever the pain is I also massage the area lots.

RE: Post-mastectomy pain syndrome

by finger1 on Mon Apr 12, 2010 08:38 PM

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Go buy some MSM at the health food store and rub it where ever it hurts as often as you need for a few days it might help it did for me. I also had warm baths where I massaged the area including my back behind my shoulder which was very sore when I woke up from the surgery. I am into my third week after surgery and this is the first day I can say I have very little pain for the first time since surgery. Good luck I don't take much for pain killers because they never really help anyway.

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