I had a bilateral mastectomy earlier this week. So far my recovery has been going surprising well. I had planned to get reconstruction but was really having a difficult time with that decision prior to my surgery. My surgeon did do a skin sparing procedure with the idea of a probable reconstruction down the line. Now that the surgery is complete, however, I feel quite certain I would like to remain flat. I happened to find your channel after my surgery. I'm hoping maybe I can get an aesthetic closure once I complete any radiation or chemo I might need (should find out my surgical pathology results in another week or so). Just wanted to let you know I have really enjoyed your channel. It's been very informative and has helped me keep a positive mindset!
I still have nerve pain from a bilateral mastectomy in June. I can’t tolerate gabapentin, makes me very dizzy to the point of falling. Arnica cream helps some. Feels like a thousand tiny needles, and gets worse throughout the day. Physical therapy has helped. I am hoping that it will eventually resolve.
@@Elaine-w2s Absolutely--it's not for everyone, as I said. But I think it's worth a shot. The amount of time I used it/the protocol that I used calls for was under a month, and there would not be any tendency to develop chemical dependence in that length of time.
When I had my lumpectomy 12 years ago. I didn't have nerve pain, but I had numbness (nerve associated by removal of 2 lymphnodes) behind my right arm (tricep and higher) which took about a year to get back to normal feeling.
I was diagnosed with post mastectomy pain syndrome 6 months after my smx. Gabapentin gave me horrible brain fog, drowsiness and heaviness in my my forehead and there was no way I could work full time while taking the medication. I am now going to pain management and get trigger point injections that contain anti inflammatory and steroids to reduce swelling and awakens my nerves in an attempt to retrain them. Scar tissue also is causing issues with nerve development. I also receive acupuncture and use prescription topical lidocaine to use as needed. My next step would be try lyrica but I’m trying to do physical therapy first before taking a daily pill that has a lot of side effects.
Thank you so much. I am having surgery soon and you are giving me questions to ask. My surgeons appt is next week. I feel so much more empowered after watching this. 😂❤😂❤😂. I have the same lobular carcinoma you had. But my lymph nodes are not affected. Hugs and thanks.
Excellent information! May I ask who your surgeon in Seattle was? I am probably going to do a preventative mastectomy due to a gene mutation and am in the Seattle area.
Claire, I can't tell you what a great experience I had in Seattle--night and day! My surgeons were Angelina Crown and Grace Um with Swedish/Providence Seattle.
@@estrogendiaries Thank you! I had made an appointment with a Swedish breast surgeon in Issaquah. Dr. Lee. I wonder if she and her colleagues collaborate and she will know how to make everything go smoothly as well!
I have so much nerve damange and I go to one of the best hospitals in nyc sloan Kettering and no one is helping me but going to to pain management and I don’t know what to do also I have chronic Lyme disease and maybe that don’t help me but this is no way to live
This is a quite timely video for me since I'm having my mastectomy this Friday. When you mentioned laser surgery, it really got my attentiin. How about red light therapy or infrared light therapy for this? I own a red ligh tpanel and hand held red light devices too. The only thing is Just before my cancer diagnosis this last time, I was redlighting my chest area for about a month. Any chance does red light therapy stimulate cancer cells if they are there? I've stopped redlighting the chest area since my diagnosis for fear of this. Thank you Kathleen!
Comments 13 @Elaine-w2s My mastectomy was 7/30 so I've had ten weeks of recovery. It took quite a few weeks for the pain to lessen. I can't say I had much swelling in the armpit from SLNB but it hurt a lot and still has a sensation that I attribute to continued healing. My chest is still mostly numb and extremely sensitive to touch. Many doctors and nurses don't understand it can take much longer to heal than the perfect textbook case. My rom has progressed very well but I wasn't supposed to raise my above shoulder height for a month and I didn't try until the Dr gave the ok to start exercising. Since it's only been three weeks, don't get discouraged, it all takes time.
Red light therapy (I have a wraparound band) 3X day for 30-90 minutes each time really helped me heal with almost full sensation after less than one year! And now every time I get a pain I put the red light band on and it goes away within 10 minutes. Please! This is a non-Invasive very wonderful therapy!
I had a bilateral mastectomy earlier this week. So far my recovery has been going surprising well. I had planned to get reconstruction but was really having a difficult time with that decision prior to my surgery. My surgeon did do a skin sparing procedure with the idea of a probable reconstruction down the line. Now that the surgery is complete, however, I feel quite certain I would like to remain flat. I happened to find your channel after my surgery. I'm hoping maybe I can get an aesthetic closure once I complete any radiation or chemo I might need (should find out my surgical pathology results in another week or so). Just wanted to let you know I have really enjoyed your channel. It's been very informative and has helped me keep a positive mindset!
Thanks so much for sharing your story with me Emily. I know that I wish I'd found more stories sooner, so I'm really glad to be here for you!
I still have nerve pain from a bilateral mastectomy in June. I can’t tolerate gabapentin, makes me very dizzy to the point of falling. Arnica cream helps some. Feels like a thousand tiny needles, and gets worse throughout the day. Physical therapy has helped. I am hoping that it will eventually resolve.
Gabapentin can cause withdrawal and aggravate the nerve pain. 😢
I should have mentioned that acupuncture works well for some women too!
@@Elaine-w2s Absolutely--it's not for everyone, as I said. But I think it's worth a shot. The amount of time I used it/the protocol that I used calls for was under a month, and there would not be any tendency to develop chemical dependence in that length of time.
@@estrogendiariesIs EMLA cream prescription?
@@estrogendiarieshow many mg?
btw did you have chemo? what stage was your cancer? i’m new to your channel and thanks for doing these videos!
When I had my lumpectomy 12 years ago. I didn't have nerve pain, but I had numbness (nerve associated by removal of 2 lymphnodes) behind my right arm (tricep and higher) which took about a year to get back to normal feeling.
Thank you so much for this information!
You are so welcome!
I was diagnosed with post mastectomy pain syndrome 6 months after my smx. Gabapentin gave me horrible brain fog, drowsiness and heaviness in my my forehead and there was no way I could work full time while taking the medication. I am now going to pain management and get trigger point injections that contain anti inflammatory and steroids to reduce swelling and awakens my nerves in an attempt to retrain them. Scar tissue also is causing issues with nerve development. I also receive acupuncture and use prescription topical lidocaine to use as needed. My next step would be try lyrica but I’m trying to do physical therapy first before taking a daily pill that has a lot of side effects.
Let me know how it goes!
Thank you so much. I am having surgery soon and you are giving me questions to ask. My surgeons appt is next week. I feel so much more empowered after watching this. 😂❤😂❤😂. I have the same lobular carcinoma you had. But my lymph nodes are not affected. Hugs and thanks.
So glad to hear that your nodes look good! ILC is so hard to catch early.
Excellent information! May I ask who your surgeon in Seattle was? I am probably going to do a preventative mastectomy due to a gene mutation and am in the Seattle area.
Claire, I can't tell you what a great experience I had in Seattle--night and day! My surgeons were Angelina Crown and Grace Um with Swedish/Providence Seattle.
@@estrogendiaries Thank you! I had made an appointment with a Swedish breast surgeon in Issaquah. Dr. Lee. I wonder if she and her colleagues collaborate and she will know how to make everything go smoothly as well!
I have so much nerve damange and I go to one of the best hospitals in nyc sloan Kettering and no one is helping me but going to to pain management and I don’t know what to do also I have chronic Lyme disease and maybe that don’t help me but this is no way to live
I am not seeing the link for the study for the gabapentin/EMLA protocol. Did UA-cam remove it? Is it ok to message you on IG for it?
So sorry! Here it is: journals.lww.com/anesthesia-analgesia/Fulltext/2005/11000/Multimodal_Analgesia_with_Gabapentin_and_Local.30.aspx
This is a quite timely video for me since I'm having my mastectomy this Friday. When you mentioned laser surgery, it really got my attentiin. How about red light therapy or infrared light therapy for this? I own a red ligh tpanel and hand held red light devices too. The only thing is Just before my cancer diagnosis this last time, I was redlighting my chest area for about a month. Any chance does red light therapy stimulate cancer cells if they are there? I've stopped redlighting the chest area since my diagnosis for fear of this. Thank you Kathleen!
@@rachelsmename6 sending you prayers!
@@Elaine-w2s Thank you Elaine. I appreciate that!
@rachelsmename6 Best of luck to you. Mine was two months ago.
@@lisam200 how’s your pain? and ROM? Had DMX 9/17 with ALND, my armpit is still swollen and can’t lift my arm.
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@Elaine-w2s
My mastectomy was 7/30 so I've had ten weeks of recovery. It took quite a few weeks for the pain to lessen. I can't say I had much swelling in the armpit from SLNB but it hurt a lot and still has a sensation that I attribute to continued healing. My chest is still mostly numb and extremely sensitive to touch. Many doctors and nurses don't understand it can take much longer to heal than the perfect textbook case. My rom has progressed very well but I wasn't supposed to raise my above shoulder height for a month and I didn't try until the Dr gave the ok to start exercising. Since it's only been three weeks, don't get discouraged, it all takes time.
Red light therapy (I have a wraparound band) 3X day for 30-90 minutes each time really helped me heal with almost full sensation after less than one year! And now every time I get a pain I put the red light band on and it goes away within 10 minutes. Please! This is a non-Invasive very wonderful therapy!
Yes, I've heard it's amazing for pain. Good for you!