RECONSTRUCTION warning, wish i knew

roz123 · 01-15-2013, 03:24 PM

hi ladies
I posted this on bco.org aswell
as some of you know I had a bi-msx (my choice) with TE's. Due to rads damage I was advised to have a lat dorsi flap on that side. I was not a candidate for DIEP due to insufficient fat.
Well, I have had a ton of complications, the most distressing being constant lower back pain. Seems the rest of my muscles are not "compensating" they way my PS assured me they would. I voiced the concern about loss of muscle strength to him prior to surgery to which he replyed that I would be able to do everything I did before and only if I was "mountain climbing" would it be a problem
Nothing can be further from the truth - my back feels horrible
I am currently doing PT and back to yoga and myofacial release - but after finding some ladies w the same surgery, seems for a select few of us this issue is chronic
so here I am, 44 and in chronic pain due to breast reconstruction surgery
I know I may be the minority here but I just want to let anyone considering this surgery what can happen.

IrvineFriend · 01-15-2013, 03:41 PM

They did not work for me, but I was Rx'd lidocaine patches to relieve pain. My roommate used them for back pain, but they didn't do much for her either but that doesn't mean it might not help for you.

As you know, I'm another unlucky one with on-going chronic pain and it get's old and very tiring.

Personally, I would try acupuncture if your Docs OK it. It's kept my 99-year old Grandmother mobile and still living on her own.

Good luck and thank for the support you have given me as well.

-Julie

linn65 · 01-15-2013, 08:00 PM

Oh man that is awful! I will not get reconstruction for another 6 months, and I was told as well due to radiation that I would be able to get some sort of flap. However, I am not sure which or what one yet since just started radiation. All these things you are to know as a patient and it can be very confusing. I am so sorry for all of your pain after everything else!!

roz123 · 01-15-2013, 09:17 PM

linn - you can do other flaps that don't take muscle - DIEP, SGAP etc. If you PS says you don't have enough tummy fat look for alternate areas to take -(I think they take from the buttocks as well as stomach) another suggestion (which was never made to me) is that you can do the radiated breast using DIEP and the other (non radiated) breast with an implant, not ideal but at least you won't be sacrificing muscle - TRUST me you will never be the same

linn65 · 01-15-2013, 11:04 PM

How much tummy fat do you need?

Mtngrl · 01-16-2013, 08:02 PM

I'm so sorry it has worked out badly for you. Thank you for sharing your experience.

I haven't had surgery, and I may not ever have it. But before I was diagnosed at stage iv I was looking at the different procedures, and I was skeptical about ones involving muscle tissue. I really hope you get pain managed successfully.

ele · 01-17-2013, 06:48 AM

I had the Diep procedure and I'm thin with not a lot of fat. My surgeon asked me to gain weight and I added 11 pounds before surgery. I have a small breast from Diep which was fine with me since I had DD before and 6 months later my other breast was reduced in size. A lot of mds won't do Diep on thin people but I was lucky to find a surgeon who had no problem helping me.

LoisLane · 01-17-2013, 01:57 PM

Hi Roz sorry to hear about this ongoing pain with your recent reconstruction, I did see your post on breastcancer.org and I was hoping you would be feeling better. I have tossed the idea back and forth for years about reconstruction. I had a consult with Dr. Hofer's office and they said I (definitely) have enough fat from my abdomen for a bilateral diep. I was worried however because one side had been radiated and I thought there could be a problem with that. I also went to an information session at Sunnybrook with Dr. Laura Snell and Dr. Joan Lipa. Another women I know went through the surgery with these docs and she is thrilled. She said the recovery was very difficult. I hope that your situation will get better with time. Cant the docs do anything to fix this? I think at my age (60) I am not sure I will go ahead with reconstruction because apparently it takes about six months for full recovery. I feel terrible that you are having such a difficult time. I am thinking of you and wish you some relief from this very soon. Lois

roz123 · 01-17-2013, 02:32 PM

loislane - Dr Hofer did my surgery so it was technically well performed. I seem to be a bad case. I would have done 1 diep breast if I was informed of the complications and how much re-hab I would have to do. I have heard of women who do 1 diep and 1 implant. It is what it is now so I have to deal with it.
I am only 44 (42 at diagnosis) so I just couldn't see living without reconstruction but of course hindsight is 20/20 and I wish I would have just done the msx's or at the least a different type of reconstruction

'lizbeth · 01-17-2013, 02:46 PM

I had severe back pain and found accupunture very helpful, not pain from the reconstruction but another cause.

After taking 10 Advil per day for about 1 - 2 years I tried 6 visits with the acupuncturist. I also received some vigorous massage from the acupuncturist. The pain was totally relieved for about 2 years. Then I went back for another session.

I typically only have minor issues usually for too much of a workout these days.

I see you are receiving myofascial release, but I feel that neuromuscular therapy could be a more appropriate modality. Where is the pain? A contracted muscle spindle will refer pain to another area. Is your therapist familiar with working trigger points?

The Latissimus Dorsi muscle originates at the bottom of the scapula, the spinous processes of the last six thoracic vertebra, last three or four ribs, thoracolumbar aponeurosis and posterior iliac crest. The muscle inserts into the Intertubercular goove of the Humerus.

Lat. Dorsi extends the shoulder, adducts and medially rotates the shoulder.

The Teres Major is nicknamed "lat's little helper" because it is a complete synergist. This muscle originates on the bottom and outer edge of the scapula and inserts on the lesser tubercle of the humerus.

If you remove the Lat Dorsi, the Teres Major will be forced to make up for it's loss.

I checked the referred pain patterns and the Teres Major trigger points typically refers pain into the shoulder. The Lat. Dorsi trigger points refer pain into the mid back at the lower scapula and at the waist.

You can try reaching back, finding the outside edge of the scapula and try squeezing the tissue between it and the axilla to find trigger points. If you find a tendor point or a trigger point hold the spot gently for 30 - 60 seconds or less if it changes. If it worsens lighten the pressure.

Hope this helps and that you find the help that you need.

Get better soon!

Joanne S · 01-18-2013, 11:35 PM

Roz, I feel for you. I had multiple severe complications too. (reconstruction w/expanders) In addition to severe PMPS (post mastectomy pain syndrome) I had a severe infection that almost killed me.....and ended up with chronic back problems. My plastic surgeon was in denial that there was a problem. In addition to physical therapy, I saw two other plastic surgeons and had additional surgery. I also saw a Physiatrist (physical medicine doctor). And I still get treatments regularly from a Manipulative Osteopathic doctor. Unfortunately I don't have breasts. My chest is deformed and I can't wear a bra w/prothesis because it causes pain. I still have back pain but it's more tolerable.

Perhaps you can get some additional diagnostic tests to find out if there is a pinched or dangling nerve or some other hidden problem. In this day and age we should not have to suffer with continuous pain. Please, please consider getting more opinions and diagnostics. Wishing you improvement! In my prayers, Hugs, Joanne

roz123 · 01-19-2013, 08:45 AM

thanks joanne - I did have a bone scan yesterday (Friday) because my onc was concerned - obviously I am too and keep thinking about possible bone mets since the pain never seems to go away
I am in the process of seeking out different opinions but unfortunately in Canada that process takes a very long time.
What concerns me most is that I spoke to a PT yesterday after another member PM'd me (from bco.org) and she said her lat patients do very well and don't complain of lower back issues. So of course now Im thinking there is something more sinister going on.