Post-mastectomy pain syndrome

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RE: Chronic Post-mastectomy Pain

by Choose50 on Wed Sep 30, 2015 08:46 PM

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Hi, I found something that helped my pain! It took over two years of enduring horrible pain everyday. I had over 30 pain treatments, tried lots of medications,chiropractic care, massage, and months of physical therapy. I also tried a spinal cord stimulator, which did not work. In June my pain doctor tried a ketamine infusion. It feels like a miracle! I never thought I would feel this well. It is not perfect but, it is pretty close. It is an IV infusion that has to be repeated. I urge you to keep searching for a doctor that is willing to listen and keep searching for an answer with you. I live in the Chicago area and I am so grateful I have a doctor who didn't give up. If there is anything I can help you with please let me know. NO ONE should have to suffer with this horrible condition!

RE: Chronic Post-mastectomy Pain

by capitalk100 on Thu Oct 01, 2015 06:37 AM

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Thank you so much Choose50 for replying to my message! It's so reassuring to hear some good news on this horrible back pain. So pleased you were able to find a caring doctor who persevered and helped ease your pain. Unfortunately I'm in England and it's not so easy to always get what you want here. Having said that, I will try and find out about IV infusion. Thanks again.

RE: Chronic Post-mastectomy Pain

by LMMax on Mon Oct 05, 2015 03:19 PM

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I'm not sure how this works, glad I found the site though. Lots of ammo to take to the doctor. Seems like there is a LOT that doctors don't tell anyone. They seem more interested in whatever line is going to cover their collective asses.

I had my surgery Sept 26, 2015. Went home Sept. 27 with all these drainage tubes. My daughter was with me the first week, but everyone has gone about their lives now. PMPS, I know, even now, that my life will never be the same. I'm 64 and wasn't quite ready to "thrown in the towel" but every movement requires such exertion. I'm exhausted from the pain just walking across the floor. First post-op appointments with my 3 doctors is this week, anxious to hear their response. I opted for reconstruction rather than nothing, but not quite sure.

RE: Chronic Post-mastectomy Pain

by capitalk100 on Mon Oct 05, 2015 03:37 PM

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Dear LMMax, I really do feel for you. I'm sure you've heard this line a million times since Sept 26, but it is very early days for you. Having said that, if I ever (please God I don't) have to go through this dreadful ordeal again, there is no way I would have a reconstruction. I think I've overcome the cancer better mentally having had recon, but living with this dreadful tightness in my back, some 3 years now, I would never ever do it again. There is so much talk of the mastectomy, but no where near enough talk of the reconstruction. I really feel it's one of the biggest mistakes I've ever made in my life. It has completely put a big damper on my life. God bless you.

RE: Chronic Post-mastectomy Pain

by LMMax on Wed Oct 07, 2015 05:55 PM

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Capitalk100, thanks, I am new to this blogging thing, seems to make the world a smaller, nicer place.

I am still trying to wrap my head around all of this. Every time the doctor calls, the news gets worse and worse. Right now all I have in are spacers. The reconstruction is now dependent on the chemo and radiation that I just found out I will need because post-op pathology found a lot more than the doctors knew was there. I feel like I am back to, back to what-I don't even know. What about my job; my bills; I work for the State of Kanas where we don't have short-term disability and I am not too sure about long-term disability; no job no insurance. I just don't know.

RE: Post Mastectomy Pain

by BeckyDr on Fri Nov 13, 2015 12:52 AM

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Hello, 41 years old and I am brand new to this site. Double mastectomy Dec 2014, reconstruction, then implants May 2015. I continue to have pain under both breasts that sounds just like yours. I am scheduled to have my implants removed Dec 17, but am scared to death to do this and still have the pain.  I am not seeing any responses to your message from September 10th. Any updated info that you have learned would be much appreciated! 

RE: Post Mastectomy Pain

by capitalk100 on Fri Nov 13, 2015 06:30 PM

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On Nov 13, 2015 12:52 AM BeckyDr wrote:

Hello, 41 years old and I am brand new to this site. Double mastectomy Dec 2014, reconstruction, then implants May 2015. I continue to have pain under both breasts that sounds just like yours. I am scheduled to have my implants removed Dec 17, but am scared to death to do this and still have the pain.  I am not seeing any responses to your message from September 10th. Any updated info that you have learned would be much appreciated! 

Hello dear BeckyDr. Sorry, but I've only just received your message. Sorry to hear you have so much concern and pain regarding your reconstruction. I had my reconstruction the same day as my mastectomy, with muscle from my back together with a small implant. Unfortunately for you its dragged out over a period of 5 months. I am in England UK and I think our procedures are different to your country. I did have an aching breast for sometime after the operation, but it did eventually. So home your pain is less now than it was back inSeptember. Will be thinking of you on December 17. Please post after the 17th and let me know how you're doing.

RE: Post Mastectomy Pain

by juliefigone on Fri Feb 12, 2016 11:08 PM

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On Nov 13, 2015 12:52 AM BeckyDr wrote:

Hello, 41 years old and I am brand new to this site. Double mastectomy Dec 2014, reconstruction, then implants May 2015. I continue to have pain under both breasts that sounds just like yours. I am scheduled to have my implants removed Dec 17, but am scared to death to do this and still have the pain.  I am not seeing any responses to your message from September 10th. Any updated info that you have learned would be much appreciated! 

Hi BeckyDr,

I also had double mastectomy with recon.  Two years later I developed PMPS, same pain as yours.  I found a doctor who said moving implants to the front of muscle would help, so I did, big mistake, three weeks later I removed implants altogether.  I should have left well enough alone.  I still have discomfort with no implants and now no breasts.  Actually my pain was better with the implants than it is without them.  Lesson learned.  In my case keeping the implants would have been best.  I hope this helps you.

RE: Chronic Post-mastectomy Pain

by annalevis on Thu Mar 23, 2017 07:18 PM

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That is right that it's the growing scar tissue which having trouble for you. I think you should consult a doctor as i have my mastectomy procedure from https://www.newlooknow.com/

RE: Post Mastectomy Pain

by Marilynkt on Tue Feb 12, 2019 01:13 PM

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Dear Lisa,

I have the same issues. Ihad my surgery in 2015 and the tightness is only getting worse. I had my surgeery over Christmas  break and developed MRSa and had to have two more surgerys the first one to remove the lift side implant and drain and clean the area then the following day I had to go back in and have the right side removed and cleaned because of the infection of MRSA, The tightness concerns me because it gets so tight I get heart burn and shortness of breath at night. I though it was all n my heaad but I am so happy to find I am not strange that there is something going on. I itch in the area around the two implants that no matter how I try to scratch I can't get relief I have tried bendryl but no releif so far. I wanted to get the implants removed again but really if it wont change things I would rather not have yet another surgery. So I agree with Sandy I dont want to keep having surgerys its bad enough to have ugle scars let alone go through this again. I know I must of had a different outlook for the outcome of the surgery but all the research I did I never read of this happening. 

Thanks for listening and posting your story

Your sister in surgery Marilyn

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