Tightness in back and side after lat flap reconstruction

nash

I'm four months out from unilateral lat flap done for a recurrence in a previously radiated lumpectomy breast. I've been reading people's "iron bra" stories, and I have that (it feels like I always have a tight sports bra on, with a brick strapped to my chest), but I also have excruciating tightness and pressure in my side and back on the surgery side. It feels like a combination of having duct tape on my ribs and someone pinching ribs with their fingers, plus the whole area being encased in cement.

These feelings started as soon as I woke up from the lat flap surgery, and have continued 24/7 with varying degrees of intensity. It was a 10 for the first few weeks after surgery and got down to a 7 about a month ago. The PS and pain clinic are mystified, and keep telling me it's PMPS and if I take gabapentin all will be fine. I don't want to take gabapentin, and I think it's all mechanical anyhow.

I self-referred to PT (PS didn't think I needed it), and PT found that my diaphragm, which is normally tight to begin with, is in spasm. Also, ribs and vertebrae are not moving properly. She has been doing release work on that and also some myofascia release. After four sessions over a few weeks, I am down to a 4/5 in the mornings, then things get worse as the day progresses. She said my back is tight on the surgery side from the neck all the way down to the top of the hip.

I had to ask for Flexiril right after the surgery, and it didn't help anyhow. Heating pads don't help. Ice doesn't help. Stretching makes things worse. So far the only relief comes from the PT manipulating things, but it is short lived. I've also been going for massages, but they don't do much.

Has anyone experienced anything like this? For reference, I am a competitive athlete and on the thinner side of things. No meat on my back, so I'm sure most of this tightness is from losing a big hunk of flesh off of my back, combined with surgical incision tightness, plus getting manhandled during the surgery (I had a bruise the shape of a handprint on my back after surgery, pretty much right where most of my problems have been.). But I'm just curious how common all this is, and what others have done about it. If it's permanent, I'm going to be really unhappy, b/c it affects my QOL in a big way.

notadaygoesby

Nash - Go online and check out the intercostal brachial nerve. This is a nerve that a surgeon can accidentally cut in surgery however, I'm not familiar with the lat flap surgery if this is at all possible to happen. I had a double mastectomy with expanders in January 2013 and two weeks out of surgery and ever since I have had nothing but pain on both the cancer and non cancer side. The pain radiates across my chest and down along the side of the ribs and travels to the back, which is the cause for the back spasms. Similar to the "iron bra" feeling. Wearing a bra, whether its lose or normal doesn't effect the pain level. I'm probably at a level 5 all day until I get home and whip off the bra! Yay! Sitting and working at the computer all day(for my job) is the absolute worst! After online research, I believe, for me, this nerve was cut. I have done physical therapy, massages and a nerve block to the T2 area, which gave me 4 days of short lived happiness, this procedure should last up to 3-4 months in some patients, UGH! . They are saying PMPS which I think ties together with many issues people have. It is very frustrating because on one hand you are grateful to be alive but on the other hand although the level of pain is not severe, your quality of life is compromised. Wish I had ALL the answers! LOL. I hope this helps you!

nash

Thank you soooo much for your post! I may or may not have damage to that nerve, but while researching it, I came across a bc patient blog that mentioned Post Mastectomy Reconstruction Syndrome. I'd never seen that term before, only PMPS, so delved deeper into that. And came across info put out by Memorial Sloan Kettering in NY that actually discusses "iron bra" and tightness. It doesn't describe the tightness in the back and side like I have, but it does say that PT is the way to go (which I'd already been figuring out), and that there are drs who specialize in this called "physiatrists". They are is a rehab specialists, and at the medical center I go to, they are in the orthopedic surgery dept. I'd already been thinking I needed an orthopedist.

https://www.mskcc.org/blog/coping-pain-after-breas...

I have an appt with pain clinic tomorrow, and one of the physiatrists is on staff there. The pain dr I've been with doesn't have the right background to help me. So thank you so much because you have totally gotten me headed in the correct direction. I will also ask about the intercostal brachial nerve while I am there.

I hope that you are able to find some relief.

nash

LOL Joanne! Will keep you posted. Was thinking of you today.

notadaygoesby

Thanks for that info Nash. I too will look into what you posted. I think I have just become so tired of trying to figure this out that I have given up on possibly getting any relief plus its financially draining. Keep us posted, I would love to hear what you find out. Good Luck!!!

I just went on the link you included. Great info! I have a lot of the symptoms they mention as well as cording, so I will also dig deeper and find a Physiatrists in my area.

Janice

Shoulda-woulda

Hi Nash, I actually just posted under (I think) "pain" thread if you can find it, but wanted to reply directly to your very well written post. I've never posted to a blog before, but am now at my wits' end trying to get to the bottom of these issues. I don't want to alarm you, but I have been dealing with this since a bilateral w/ lat-flap in '08. I'm happy to see you are self advocating! Don't ever stop- I wish I had started sooner! My PS also didn't prescribe PT, but after going myself, I told her it should be mandatory after this surgery. I certainly swung back a lot sooner from knee surgery than this one. That particular PT was a few years ago for a shoulder issue (which I now think is connected since both shoulders & other joints have had significant problems), and my local PT was wonderful in massaging & manipulating my back skin, which he said was basically "stuck" to my ribs. I am thin like you & had the "tight bra", etc issues. The skin is still loser which helps some, but thoracordacil nerve regenerations cause a heavy pulling forward, affecting posture & disc pain, etc. Had 3 nerve ligation surgeries w/only short-term relief as they keep regenerating. My PS said this is more common in athletic types due to strong muscle memory. Ironically, after all these years, the intercostal brachial nerve referred to by notadaygoesby was brought up by my PS as a possible cause of my severe nerve pain (axillary thru arm). She referred me to my breast surgeon who did a chest CT with only diagnosis "no malignancy found." (Since this was not the question or point, I have to chase more info down from breast surgeon. I'm curious how you made out with physiatrist. I did not have much luck with mine or the PT she referred me to, but this could be bc they may have been treating an extension of the main problem. I recently had several visits with an osteopathic ortho who was very helpful with manipulations, "cracking", etc which helped short term. She recommended OT/PT that specializes in myofacial & deep tissue massage, as well as experience with breast surgery patients, but I haven't been yet.

As I said, I don't want to alarm you with doom & gloom. I just want you to keep these things in the back of your mind so you know you're not alone. Also, KEEP COPIES OF EVERYTHING! I started doing this several years ago because all the drs. expect me to reiterate what previous drs. had told me, however many years ago- no kidding! In doing so, I've also discovered several errors in reports ("tram-flap" ipo "lat-flap", etc. or ordering a scan that may have been done 2 months ago).

I honestly hope by the time you're seeing this, you are much better! Can't believe I've gone on a tangent---I will stop now!

Woulda-shoulda-coulda

Shoulda-woulda

ps- I have never heard of PMRS before either so thanks for the heads up!

nash

Hi, Shoulda-wouda! I'm sorry to hear you are in the same boat. Yup, my muscle memory is doing me in, along with my already Type A/tight muscle self. I was not a good candidate for this surgery, and really wish my PS had been more upfront about all the possible complications.

Anyhow, the physiatrist I found is also an osteopath, and the manipulations he is doing are helping a bit, at least in my back. He got my back down to about a 3 after the first visit, during which he got my scapula unstuck. The second visit I didn't notice much difference. During the third visit, which was yesterday, he made some major adjustments in the axillary area that really loosened up my shoulder, but made my back/side/front worse again. I am hoping things will settle down, b/c after the first visit, I was thinking things were sort of to a point where I could tolerate them.

My PT does myofascia release--I can't tell if it's helped or not. Overall I can move better and the tissue and muscles "feel" looser to the PT and physiatrist/osteopath. But there is still all the pressure/pulling/bra feeling. But it is less intense than it was.

I also started using a compounded cream of gabapentin, flexiril and two anti-inflammatory meds. The swelling in my back is much better--not sure if it's from the cream or from body parts getting unstuck or just from time.

Feel free to PM me any time. Not too many of us seem to have this sort of extreme reaction to the lat flap surgery, and we need to stick together!

monroe7702

When I saw your post I knew I had to respond. My back feels just as you described and sometimes, it's like there is a suction pulling my exterior skin and muscle inward...my back area from the flap area to under my arm feels stuck and it wakes me up with anxiety. My PT, says these symptoms can last for a very long time. He does similar treatments from what you have described. I am 7 months out and exercise daily, trying to loosen that area. After stretching in the AM, I am good for a few hours until it starts all over. Did you have your exchange surgery done? I have not but I am hoping that after I have soft implants which don't extend into my armpit, that the lat muscle might relax somewhat. I had the lat on both sides and have no problem on my other side - which is the cancer side. I, too had a lumpectomy and radiation many years ago but when the cancer returned, I decided to have the lat surgery on both sides. I didn't mention that besides the discomfort , that I have also had many seromas; fluid accumulation under the scar that needs to be aspirated each time. Our problems are not uncommon, but I was not prepared to have this occur after 7 months out. I hate that 'stuck' feeling - so tight, so stiff. I've tried muscle relaxers and all sorts of creams - nothing really helps. Keep posting as I will also. Good Luck.

nash

Hi, monroe. Thanks so much for responding. I'm sorry you're having the same issues, and I wonder what causes it to happen on one side and not the other.

My exchange surgery is on hold until I feel better. I see the surgeon this Monday, and am prepared to tell her no more surgery, period. Do you have tissue expanders in? I have an implant that is acting as an expander. The exchange is supposed to be for a bigger implant. I can't even begin to imagine a bigger implant in there, aggravating my pec even more.

The physiatrist has started acupunture on me, and that seems to help a bit as far as loosening up the scar on the back.

Exercise makes the tightness worse for me, which is very, very frustrating b/c I am a competitive athlete. I just power through the discomfort, but it is very disheartening.