Ultra-Sensitivity Pain

poodle_mum

Hi everyone -



I'm 4 weeks post-op tomorrow from a bilateral mastectomy using the skin sparing method. They were also able to keep my nipples and use my own body tissue instead of implants.



I went in for preventative reasons due to family history and after surgery I actually did find out I had DCIS that hadn't been picked up before during mammograms or ultrasounds.



In any case I've been having a rough time with pain in general as well as seromas on both sides. Lately I've come to the spot where for the most part pain is more discomfort.



Last night I woke up with pain I've never had before. The nipple on the right has been pretty sensitive since day go and with only a small patch on the side and bottom, I have most sensation in the right breast. Right now the skin just above the sutured area of the areola is in absolute ultra-sensitive pain. Not the areola itself as I have very little sensation there. But if anything touches the suture line or about 1cm of the skin above it (at the top), I see stars from the pain.



Is this caused from nerves reconnecting?



Part of my therapy treatment is breast massage. Ironically when I'm doing that it doesn't cause any out of the norm pain. I just can't stand any fabric touch it. I've been in bed most of the day today but I still need to go out - but that means wearing clothes!



Any suggestions are greatly welcomed.

cinnamonsmiles

Before I comment, can you be a little more specific on what you mean by your skin being ultra-sensitive? Can you give more details on exactly what it feels like and the sensations?

Thanks.

poodle_mum

It's really hard to explain but I guess the best definition would be pins and needles. Only when something brushes against it. I usually wear an undershirt rather than a bra because I had complications on my left breast that has left me with about 2" in scabbing so pressure from a sports bra tends  to open the scabbing.  But, in the hopes of maybe being able to stop clothes brushing against this really sensitive spot, I even tried wearing a sports bra in the hopes that something snug against it would stop the pain but no dice.  I'm getting used to the little "zapping" pains that come and go in areas but this is a first for me. I was just wondering if anyone else has had a similar situation.  The incision itself is healed closed so I was wondering if maybe there was something I could use to numb the feeling (believe me, at 4am the first thing that came to mind was baby orajel!) But if it's just another inconvenient part of this healing processs, I'll have to just suck it up. Sorry for the vague description - with all this being so  new to me, I never know what to expect from day to day.

cinnamonsmiles

That sounds exactly the type of feelings that I had and still have almost three years post BMX w/node removal.

My doctors tell me it is nerve damage from nicking nerves during the BMX and SNB/axillary node removal.

If it becomes to the point that you can't tolerate it, there are oral medications such as Gabapentin (generic form of Neurontin), Lyrica, Amitriptyline (an anti-depressent that has had some success with some that have pain and helps promote sleep at night if you are waking up from pain) that have had some succuess for nerve damage pain.

Make sure you talk to all your doctors about this so they know and document it in your files.

I am sorry that you have this side effect, too. I know for myself firsthand, what you are doing through with this stuff.

I hope  you find some relief. Talk to your doctors.

poodle_mum

Thanks so much for the info. It just seems one thing after another - swelling, seromas, what I called an exploding nipple when I woke up to find the seroma on the one side had leaked out all night (I didn't have drains), then another area away from the incision on the left side opened and drained and now scabbed over, the zapping sensations and of course the complete lack of sensation in a lot of areas (which makes me wonder if my brain is making the areas that I do have sensation appear more sensitive).



I never know what to expect each day but at least I'm getting my strength back.



Thanks for the advice, it is greatly appreciated

:-)

violet_1

Poodle,

So sorry to hear of your painful situation. ..:(

I can relate to the one side extra sensitive pain part. It sounds like neuropathy pain. I can't wear a bra or seatbelt when driving...nor sports bras.

I'm in the process of finding a GOOD pain management specialist.

Do you think it's due to your nipple sparing MX?

More work done/needed for that & using your own tissue?

I'm not sure what method they used to recreate your breasts?

Do you like your PS/ BS?

My breast/foob doesn't hurt to directly touch it, but is super sensitive to ANY pressure like bras, seatbelt s, etc. especially by my MX scar..but hurts/sets it off on inside of foob where bra hits by cleavage & on outer side & bottom. It started during fills w TE's so they think it's Mastectomy Pain Syndrome...nerve damage...but having implants probably didn't help...;)

What do your docs say about the pain?

Violet

cinnamonsmiles

Violet, have you tried any of the meds I listed above for your PMPS? Or OT?

violet_1

Cinnamon,

Gabapentin--had horrible reaction. Taking low dose Kadian & Norco for break through pain...TRYING to get Lidocaine patches approved by insurance. ..

Thanks...:)

Violet

poodle_mum

Violet - My surgeon is awesome. I spoke with him the other day and he said it's probably due to nerves reconnecting at the areola. It was pretty constant for a few days but then just became an occasional pain. So that is good news.



I did not want implants - I told him just save what you can and whatever size they ended up, so be it. It has only been a month so there is still a significant amount of swelling, particularly on the right side. He had to re-open part of the incision on the left side this past week because of the seroma but it's actually healing quite well now.



I have very little sensation on the left but more on the right. His response was that he had to do a lot more work on the left side where he found the DCIS.



Thanks for all the input. I can't wear a seatbelt yet without a pillow. I have a couple of sports bras and a couple of microfiber bras but neither are comfortable yet. I'm waiting for some bandeaus I ordered. I'm hoping to have more success with them.

Widdershins3

Just wanted to mention that the only bras I can tolerate at all are those Genie ones with the shaped thin foam pads. But I'm just 3 and a half weeks out from my bilateral mastectomy (skin/nip sparing) and the areas where the drains were is super tender, so I can only wear them for a couple of hours, then have to peel them off. Even that ultra-fine knit fabric presses on the sore tissue. I got a post-surgery camisole that I can't yet wear due to that pain, too. Very expensive and it's just sitting there...

I also had an area of skin the size of a quarter *die* right over the drain tube. It's horrific looking, like something you'd see on one of the zombies on "Walking Dead" on TV! The surgeons ignored it completely and by the time I insisted something be done it was infected-looking. But now I have a sulpha and silver cream that's halted its growth in size. I'm going to have the plastic surgeon suture it closed instead of waiting for it to heal, in hope of having a smaller scar.

Sure wish I'd been warned about how much pain I'd have post-op.

poodle_mum

Widdershins3

I had the same procedure as you did - August 22nd. I found at the beginning as the nerves were "re-connecting" the ultra-sensitivity was almost unbearable. It felt worse than the pain of the surgery itself sometimes. I'm amazed you can wear a bra so early. I've had a lot of problems with openings on the lower incisions so I have not been able to wear a bra although I've tried a few times. I've found that it was just easier to wear an undershirt.

Usually the surgeon will not suture an area such as you described (I don't know if your surgeon has or not). Since it needs to heal from the inside out, stitching it closed will not allow it to heal (I had asked the same question when mine opened two weeks post surgery and he said no).

I've found that with time the ultra-sensitivity has eased, occasionally I still get a shooting pain or it hurts if my shirt rubs against it. I have some parts with sensation and some parts without. Since the most intensive part of my surgery was on the left side, there are a lot more nerves damaged so very little sensation on that side as opposed to the right side.

How are you making out now?