postmastectomypainsyndrome

I suffer from post mastecyomy pain syndrome so they tell me, I'm trying to figure out how they come to that conclusion because they haven't as much as looked at my chest to see what is there. I believe that post mastectomy pain syndrome is just a fancy way of saying that the doctor made a mistake during surgury and it can not be fixed. I believe completely that that surgeon cut to much skin off and then was forced to stretch my skin so much that with every movement that I make it feels like someone is ripping the skin from my body. And if its not an surgical error then why are the doctors not being taught about this in school and why are they not telling their patients that it could happen to them after all this has had a name for almost 24 years at least and with all the stories that I have read one thing we have in common is are doctors all lack education about this syndrome and we are stuck paying for their mistakes it ends up costing us our whole lives that doctor made a mistake and I'm going to find a way to prove it. I need help any information that you feel might help please email me at lewis.starla@gmail.com. He took my life and I'm going to get it back one way or another.

 

On 5/8/2009 starla wrote:

I suffer from post mastecyomy pain syndrome so they tell me, I'm trying to figure out how they come to that conclusion because they haven't as much as looked at my chest to see what is there. I believe that post mastectomy pain syndrome is just a fancy way of saying that the doctor made a mistake during surgury and it can not be fixed. I believe completely that that surgeon cut to much skin off and then was forced to stretch my skin so much that with every movement that I make it feels like someone is ripping the skin from my body. And if its not an surgical error then why are the doctors not being taught about this in school and why are they not telling their patients that it could happen to them after all this has had a name for almost 24 years at least and with all the stories that I have read one thing we have in common is are doctors all lack education about this syndrome and we are stuck paying for their mistakes it ends up costing us our whole lives that doctor made a mistake and I'm going to find a way to prove it. I need help any information that you feel might help please email me at lewis.starla@gmail.com. He took my life and I'm going to get it back one way or another.

 

I am 10 months post-mastectomy (bilateral) and have been in constant pain every day since. Three basic kinds of pain: a constant squeezing/tightness right through the incisions (I believe it is phantom pain-they still feel like they are there!), a numbness/tenderness mostly under my right arm (doc says most likely nerve damage from surgery) and then sharp, shooting pains that move from place to place. All pain meds that have been tried so far have not given me any relief. Just started on Neurontin last week but have not felt any difference yet. I've been looking for answers but so far only my GP has been willing to really try to help me. Both surgeons have basically told me to "live with it" and that it will last up to 2 years. Any advice would be most appreciated!

 

On 5/19/2009 TQOTU wrote:

 

On 5/8/2009 starla wrote:

I suffer from post mastecyomy pain syndrome so they tell me, I'm trying to figure out how they come to that conclusion because they haven't as much as looked at my chest to see what is there. I believe that post mastectomy pain syndrome is just a fancy way of saying that the doctor made a mistake during surgury and it can not be fixed. I believe completely that that surgeon cut to much skin off and then was forced to stretch my skin so much that with every movement that I make it feels like someone is ripping the skin from my body. And if its not an surgical error then why are the doctors not being taught about this in school and why are they not telling their patients that it could happen to them after all this has had a name for almost 24 years at least and with all the stories that I have read one thing we have in common is are doctors all lack education about this syndrome and we are stuck paying for their mistakes it ends up costing us our whole lives that doctor made a mistake and I'm going to find a way to prove it. I need help any information that you feel might help please email me at lewis.starla@gmail.com. He took my life and I'm going to get it back one way or another.

 

I am 10 months post-mastectomy (bilateral) and have been in constant pain every day since. Three basic kinds of pain: a constant squeezing/tightness right through the incisions (I believe it is phantom pain-they still feel like they are there!), a numbness/tenderness mostly under my right arm (doc says most likely nerve damage from surgery) and then sharp, shooting pains that move from place to place. All pain meds that have been tried so far have not given me any relief. Just started on Neurontin last week but have not felt any difference yet. I've been looking for answers but so far only my GP has been willing to really try to help me. Both surgeons have basically told me to "live with it" and that it will last up to 2 years. Any advice would be most appreciated!

I hate to be the one to tell you this but your surgeons are full of shit. They offensive word removed ed up and can not fix it so they give it some fancy name to cover their ass from a law suit then they will hand you their offensive word removed -up cover-up drug an antidepressant and then they hope you won't come back. They then will continue on with their lives as nothing has happened and you will be left nto suffer for the rest of your life. Some women have been living with this for 8 to 10 years or even more it isn't something that just goes away and there is no help for those of us that are forced to suffer because of what I and many others who suffer consider to be a surgical error. We just don't have the degree that they have and that they use to protect them selves you see you have to be able to find a surgeon who will discredit another and that won't happen until it happens to one of their own. Just like trying to get this information made public it is not of interest until it happens to someone in that line of work or someone who has lots of money and can afford to have their story told. As for us ordinary folk were left just hangin and waiting for it to happen to someone like that so our story will get told. Good luck to you and I would be happy to share with you all of the useless treatments I have been through and all the time they knew none of them would help not only do they take your life but then they try to bleed all of your accounts so your left out in the cold. Watch your back.

 

I had to write after reading your messages. I can relate to the pain you are all suffering with and the road you've been down with doctors and drugs. I had a bilateral mastectomy with expanders placed 7 years ago. The after pain was unbearable. The breast surgeon and plastic surgeon both said they had never heard of that kind of pain. They prescribed all sorts of drugs, recommended psychological therapy....and, of course, never told me it could be nerve damage caused during their operation! It cost me 6 months of crying in bed, until I finally got the answer from the 11th doctor I consulted. He prescribed Neurontin and Effexor (and a Fentanyl patch which I no longer use because I started accupuncture and it really, really helps...also, they have since learned that Fentanyl does not work on nerve damage pain). I've switched from Neurontin to Lyrica. I have no side effects and I am feeling much, much better. I am still in pain everyday, but I can function and do about everything I want to do. I am still very, very annoyed that the surgeons did what they did and that they covered up. I know there are so many other women out there suffering the same thing and I agree that the word needs to get out and these women need to be helped. So many are silently suffering in their homes, unable to cope. Probably many are suicidal....I know I eventually was. I am a journalist and I'm thinking this would be a good Oprah topic. She may avoid it, though, like everyone else...fearing that it will scare women newly diagnosed. My pain specialist told me that up to 30% of mastectomy patients end up with chronic, severe pain, and I have since found many studies that report that. Anyway, just wanted to tell you that I did eventually get decent help and I am "functioning." I know, now, how important that verb is. I was surviving the cancer and dying from the pain. What a crazy situation. But, I knew I wasn't crazy, even if the surgeons were trying to convince my family I was.