Post Mastectomy Pain Syndrome (PMPS)

The base is just neutral white cream, no smell no added chemicals.  It kicks in after 15 minutes or so

Also, once I'm on 3 caps per day, can I take them all at the same time at NIGHT so I won't be so tired in the day?



Violet

Hi Violet.  yes, there is an article done by JAMA (Journal of American Medicine), November 2009. It's called Prevalence of and Factors Associated with Persistent Pain Following Breast Cancer Surgery.  It was the first article that my PCP found one year after my surgery that explained all of my symptoms. There are many others that I've found over the years.  I think if you just Google Pain + Breast Cancer Surgery, you'll get quite a few that will not cost you anything.  Be careful and go to only reliable sources.  Hope this helps.

Maggi,

Thanks. I joined that FB group but didn't see a category I really fit in...I think the BMX one is no recon...? I wasn't sure where to post...?

Violet

Hi all!!! I had BC in May, 2012 and had a BMX and going through reconstruction and am fine.

Unfortunately, my sister had a prophylactic BMX with recon because of BRCA2 and developed post mastectomy pain syndrome.

She had to go on Cymbalta, tried PT, accpuncture, etc.

Can someone please help me give her good treatment advice? She lives in NY. I saw someone mention Dr. Ahn. My friend went to her and loves her for recon, but can anything be done for the awful tightness she feels.

She even switched out her implants for asmaler size and switched to saline.

What are her best treatment options? I want her to have a good quality of life. She never would of had a MX if I had not gotten cancer. I feel bad for her. Pam

Pam--I second Linda-n3. Definitely find a good massage therapist who can do myofascial release. It was a life saver for me! I had ongoing daily pain and tightness along with muscle spasms for 6 months following my mx. Once I started with massage therapy, I got off all pain meds. I went once a week for 3 months along with joining a cancer class at a gym where they taught me how to do circuit training to help with keeping my muscles supple. They also had a warm water pool where I would float on a noodle and do the breast stroke to help with stretching and loosening my shoulder and pec muscles. Now, 4 months after starting therapy, I am almost 100% pain free. I have days periodically where I have to stretch a bit more or do some of my own massage at home, but for the most part, I feel really good. I'm convinced the gym and massage made all the difference!

MaryLou, I just had 3 intercostal nerve blocks Tuesday. I felt completely numb afterwards and he said that was from the lidocaine. Today the soreness is comong back in some areas. He said to give it 5 days to gauge how it will be. How did yours work? Thanks for any help.

I am two years out and am just starting to get some relief with mayofascial release and stretching by my PT. I am hopeful I will eventually lose the iron bra...

Hi ladies today would be day 3 after the nerve blocks. I fell better. I am not having the shooting pain down my side under armpit. I am still having minor soreness in a few spots under my breast and medial at the sternum. I will use the patches and tramadol for that. I go back to work Monday so we will see how it holds up to my job requirements. Healing hugs to all.

Mel,

Did nerve blocks hurt?

V

Thanks Mel.

V

I guess I'm confused about these diagnostic nerve blocks. Dr. Williams had explained how they work like Novocain. They are not meant to last for an extended period of time. What I had was just diagnostic and lasted for about 6 hrs. He used something in the lidocaine family (starts with M, sorry can't remember name). He used ultra sound to guide him to troubled nerves (T3, T4, and T5 areas). What he is doing is a resection of the Intercostal Nerve and will implant nerves into muscle. This is the best I can describe in lay terms. Basically, he is killing the nerves. I honestly can say I'm extremely nervous about another surgery, but on the other hand, I'm so very worn out from chronic pain. On Monday, I will be 4 yrs out from my bmx and this is way too long to feel this way and way too long to be on meds that are really just putting a Band-Aid on things. Keep me in your prayers and maybe this will be the answer for all of us who wear the "iron bra"

Yes, that is exactly what he is doing. He used something like Marcaine (not sure of spelling). He injected this into the areas that I feel the most discomfort. When he used the ultrasound to guide him, it was much more accurate and it worked great! I honestly felt pain free!

Hi All,

I am wondering if those of you who use the keta/gaba/lido cream or other compounded creams are able to get your insurance company to pay for it. Mine typically does not pay for compounded prescriptions. I got a quote from my compounding pharmacy and it was high! Over $100 for just an ounce!

I have had neuropathic pain on the chest wall and under my arm since my UMX 3 years ago. In the beginning, I could not even wear any clothes on the upper half of my body. It finally calmed down enough that I could wear a coobie bra and soft material shirts. Still was constantly aware of it. Then I just had a redo of my reconstruction (TE's again and Mentor CPG a.k.a. gummy bear) and that seemed to kick it up again, especially since my areola tattoo last Monday and the oral gabapentin is just not knocking it down.

Thanks,

Connie

Bren, how long does your cream last, i.e. when does it expire? Mine expires in 2 weeks from the compounding date, so my doc has to write a new Rx every 2 weeks - has to be an original as the ketamine is a controlled substance, no refills allowed. So I have to physically pick up the Rx, take it to the pharmacy, then go back the next day to pick up the compounded cream. I have a $5.00 copay each time, which is not bad. It takes about 25-30 minutes to rub the cream into my fingers. Does it rub in quicker on the chest? My PCP has suggested I try it on my chest, but it is such a mess and I just don't have that much time to deal with it. The cream I have is for peripheral neuropathy of my fingers.