Decisions... did I make a mistake...

So sorry you are having pain.  It's a crap shoot.  If you wander over to the active topics section you will find ladies who are still having pain after an mx, and people who are struggling with reconstruction issues.  It is so unfair, but pain and long term se's seem to strike some of our numbers reguardless of what course of treatment is selected.  Sending you healing thoughts. (((hug)))

Gosh, so sorry to hear this. I didn't know there was such a thing as nerve pain after a mastectomy! All I had was a tingling feeling and a sensation that ants were crawling under the skin. No pain and those things didn't last long.  Hope you can find some relief.  Have you posted on the Internet asking about this? I did that after having a severe pain in my knee. I got several replies.  Best of luck to you!

That's tricyclic antidepressants btw!

I've been thinking about this some more. Pain isn't fun, esp. when it starts disrupting sleep. 

I know this is different, but my understanding is that if oral surgery causes numbness or other nerve damage, they give it X months (3? 6? I can't remember) and if it hasn't improved, the patient gets referred to a DDS nerve specialist. Obviously, damage from surgery is probably pretty different than rads (and different bodies parts are different), but it makes me wonder how nerves actually heal. If it was me, I'd make an appt. with my RO and come with my questions written down. (when I've tried this technique it definitely signals that I'm serious, so harder for them to pooh-pooh me. I even had one doc answer a couple questions, and then ask to see the list) My questions would be something like this:

--if the nerves are healing, should the pain symptoms be improving or at least changing? 

--what can we do to speed up the healing? Eat extra protein? Take Vit B, etc? Special exercises???

--how many of your patients (what percentage?) experience nerve damage this long after rads? If they were still in pain one year later, when did their pain go away? Any idea why some patients have problems and others don't?

 --is there a point where we might consider that these nerve symptoms are not going to heal on their own? i.e. after a certain amount of time or certain set of symptoms. What are they? What do we do then?

--are there other doctors who are experts on this?  Can you refer me?

 OK, this list is probably overkill for normal people, but if it was me I'd be PO'd and I'd want answers.

I hate to hear that you've been in pain for so long AND that your docs are pooh-poohing you. You don't deserve that.  I heard some people say (above) that their pain did go away eventually so maybe that's the usual outcome. I'm impatient and I hate when docs blow me off.  Not sure if this is helpful but just some ideas. Good luck. Ongoing pain isn't any fun. 

GmaFoley just read your post and all the suggestions of others. The only thing jumping out at me is to ask you if you have been evaluated by a LymphEdema Therapist? There are forms of lymphedema that affect your chest/ breast/ armpits/ and back / arms/ hands that can be pain pain painful! You may have it and not even be aware of it....and likewise your Drs. may not be aware of it. ( And many Breast Surgeons/ RO/ Med Onc's are not current in Lymphedema)

I can only suggest you ask your Drs. for a Lymphedema Physical Therapy Evaluation to rule this out.  And I would mostly trust that diagnosis to come from Lymphedema Therapist. or a very well versed Dr who treats LE and can diagnosis it.... Any one of your Team should just be able to write a Script for you w/o any problems.

Stop by the Lymphedema Threads for more info. Radiation/ lumpectomy can cause LE. I would not consider a Post Mastectomy Pain Syndrome Diagnosis/ Evaluation complete without being worked up for Lymphedema.

Healing healing takes so long after mastectomy....I am 2 years out and still working on it.

Feel better!

xo

brazos

'Zapping' pains are from your nerves growing back & can take a long, long time to resolve (like years)...... not that it will make you feel much better but it is normal, and I think the lingering pains would have been even worse if you would have had a mastectomy.