Post surgical nerve pain issues?

[Jg1960]

I'm wondering if anyone has had issues with nerve pain following mastectomy surgery? I had a bilateral mastectomy 4 month ago had really bad nerve pain after the surgical drugs wore off. After 6 weeks I had a nerve block done. It really helped for quite a while but now I am having issues - tightness feeling and a burning sensation across by scars and under my arms. It gets worse at night. Would rather not have another nerve block, but it is an option. Has anyone had a similar situation and if so, what have you done to make it better? How long did it take to stop bothering you? Any input will be appreciated!

[MelLump]

I'm so sorry you have that pain! I had my double mastectomy on 01/14/21, and I feel fine now. I will say that my breast scars were sensitive, but the most pain I felt was under my arms...I guess from the node test. I have expanders so I get those filled once a week, and sometimes there is a little discomfort from that for the first day or two, but I can't really say it is painful...just uncomfortable. Are they able to determine what caused the nerve pain? When I was diagnosed, they gave me a big breast cancer book. They say that you can experience a bunch of things including pins and needles. It says that a physical therapist can treat with "desensitization". That decreases the sensations from the nerve endings that remain in the area. I don't know if your doctor recommended that, but maybe ask about it?

I truly am sorry you are experiencing that...mastectomy and treatments are bad enough, but then if you have that on top of it, that must make it so much worse. I hope you can find something that takes that pain away.

Keeping you in my thoughts and sending you positive vibes for a resolution and healing.

[cinderl8t]

Hi!

Sorry you are going through this. I know it sucks. I had mine over 16 years ago, and still have zingers every once in a while. I know you didn’t want to hear that. It is different with every person though. And eventually we find out what works for us based on what we can put up with. I’ve had nerve shots..I also have back and neck issues and have shingles after pain. I have done PT, heat, ice, lidocaine cream, meditation exercises/breathing exercises, and I am on Gabapentin for nerve pain now. Probably more for shingles after pain, PHN, but helps with other. I just think that it’s a new normal now, but the road to survivorship is different for all based on myriad of factors, so the things we try to solve the various side effects that pop up will vary for all. I told them, for me, don’t say some people may get blah, blah, blah..just say I’ll probably get it. No joke, as I probably did.

[Jg1960 in reply to cinderl8t]

Thanks for your reply. I so agree with you about how they tell you about side effects....I truly feel they gloss everything over because they don't want to scare you off! I've told them I need all the information - good and bad - so I can sort it out in my own way. Stuff has happened and then they say "oh ya, that is a possible side effect". Drives me insane!! I've had a bad reaction to Gabapentin so I can't take it, it didn't really do anything for me as far as the nerve pain. I'm sorry you have shingles, that is the worst! I've had a mild case about 10 years ago - thought it was poison ivy. Lucky for me it was just itchy, not really painful. I know folks who have had severe pain from it. Hope it clears up quickly for you.

[cinderl8t in reply to Jg1960]

Thank you. They have other options for nerve pain and even things you can take for spasms at night because nights can be the worst and as an insomniac, you need sleep to heal. And pain and spasms wake you and you never get that REM restful sleep. There is gentle, chair, and restorative yoga that also helps. They provide stretching and breathing techniques that help deal with all this. I was an ESL Director of a school district and prior to that the reading and writing coordinator at a school. This helped with stress, too. Whew! You can’t even explain this to anyone who doesn’t go through it. Then, you lose your hair! I mean, really?

[cinderl8t in reply to cinderl8t]

BTW...I have lymphedema so there is that lingering nerve pain and numbness in the arm, and swelling. Never a dull moment.

[Jg1960 in reply to cinderl8t]

Absolutely! I seem to be developing lymphedema also. My physical therapist specializes in mastectomy patients and is monitoring me. I just got a sleeve and glove as a preventive measure. My arm feels very full and has pins and needles, like when your foot falls asleep. Fingers crossed that this too shall pass!

[beachlake]

I am sorry that you are going through this. I have had 2 lumpectomies (2006, august,2020) , mastectomy (september 2020), and DIEP reconstruction (October,2020). I did not have the nerve pain but I did have pain following the mastectomy. I do experience tightness and burning sensation. A lot of the tightness and pain you are experiencing is probably due to the scarring and potentially lymphedema. I have been seeing a physical therapist who specializes in lymphedema, mastectomy, etc. each week since December (once the surgical drains were all removed and healed). I also do daily PT for my range of movement, scar management, etc. From what I understand, the scarring (healing) will continue for a year. My surgical drain sites are causing the most issue for me in the upper arm area. I will need to stay on top of the scarring to prevent it from tightening up so much that it cause movement issues. A lot of the exercises and stretches are also beneficial for lymphedema. If you haven’t already, I strongly suggest that you find a physical therapist experienced in mastectomies and lymphedema. I hope that you get a some help. I know it’s difficult . I thought I was ready for the mastectomy and DIEP but didn’t realize that PT would play such a large part in the recovery process. It is good that you are aware of the changes and are looking for help. I wish you all the best. Take care of yourself.

[Jg1960 in reply to beachlake]

Hi Beachlake, thanks for the reply. I am seeing a physical therapist who specializes in mastectomy and lymphedema. She is really wonderful. We have had to take it easy because I've had delayed healing because of the chemo, mostly focusing on range of motion in my shoulder so it doesn't freeze up. We have discussed the tightness and burning and she is monitoring it. She has me wearing some light compression tank tops to help, but it seems like it makes it worse at night. I realize that it could also be a sign that the nerves are regenerating but it is so uncomfortable. God bless you doing the DIEP reconstruction, that is a lot to go through and I could not bring myself to do it. I was really hoping for a one and done with surgery. I am so disappointed that the medical profession, after all these years of treating breast cancer and doing mastectomies, have chosen to ignore all the side effects that the treatments cause. I feel as though I am totally on my own in figuring out how to address them.

[Loulou669]

hiI had tenderness/pain and swelling but it was due to fluid buildup and I phoned the Breast care nurse who drained off the excess fluid . After a couple of these, luckily after a couple of months the fluid build up stopped and therefore the pain stopped too .

. It was very uncomfortable but not sure if you are having the same issues ?

[Jg1960]

Hi Loulou669, thanks for the reply. I had a similar issue due to a hematoma, Sounds like you had a seroma, which can be drained but a hematoma can not. But the burning and tightness I have is right along the scar lines and is from nerve damage from surgery. I was aware that nerve damage is always a possibility with surgery but I was hoping it would have resolved by now. The nerve block did help but apparently has worn off. I was hoping to avoid another one, but may not be able to. Glad your issues resolved!

[jawsbar75]

Yes. I really believe the media does not cover enough about the side effects of the nerve damage from lymph node removal. It is horrible. My surgeon prescribed Neurotin / Gabapentin 100 mg oral capsule for the pain. It helped tremendously.