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Still in pain 1 year after bi-lateral mastectomy & reconstruction

nelliott59
Posts: 16
Joined: Oct 2009

I'm new here and I'm hoping someone can shed some light on this for me.  I had a bi-lateral mastectomy in Feb. of 2012 followed by reconstruction with saline implants.  All went well but the pain I continue to have is getting to be too much.  Constant tightness and heaviness in my chest and difficulty sleeping in bed for longer than 2 hours.  Had physical therapy for 2 months which did help but have now exhausted my insurance on that.  Any suggestions would be so helpful as I'm very discouraged and wondering if I should have the implants removed. What can I do?

McMarty's picture
McMarty
Posts: 187
Joined: Nov 2012

I am so sorry to hear that you are going through this!  Have you gone back to fuss at your plastic surgeon.  If they can't help, I bet there is one that can! 

You'll probably get some good tips and pointers from the people on this sight.  They have been VERY helpful for me.  I had a different kind of reconstruction so, I'm no help, but soon you will meet people here that have gone through the same thing and have good ideas.

Marty

nelliott59
Posts: 16
Joined: Oct 2009

Hi Marty,

   I have discussed this over and over again with my plastic surgeon and she just doesn't understand why I seem to be in such pain.  My physical therapist said I must have a lot of nerve damage and tightening of the connective tissue.  I really feel this is way too long to still be feeling like this.  Its also getting old sleeping in my recliner most of the time but it is the most comfortable.  Thank you for your kind words.

jnl's picture
jnl
Posts: 3873
Joined: May 2009

I don't know anything really about this, as I had a lumpectomy, so forgive me if my question is dumb.  But, could the implants be too big maybe?  Could smaller implants possibly feel better? 

Leeza

nelliott59
Posts: 16
Joined: Oct 2009

Hi Marty,

   I have discussed this over and over again with my plastic surgeon and she just doesn't understand why I seem to be in such pain.  My physical therapist said I must have a lot of nerve damage and tightening of the connective tissue.  I really feel this is way too long to still be feeling like this.  Its also getting old sleeping in my recliner most of the time but it is the most comfortable.  Thank you for your kind words.

VickiSam's picture
VickiSam
Posts: 8137
Joined: Aug 2009

Call your Oncologist and his staff - see which Plastic Surgeons they recommend you seeing.  Check with a larger Hospital in your area, specializing in Breast Cancer -- get a listing of Plastic Surgeons.  Make a few calls, get references on physicians -- and proceed to get check by another Plastic Surgeon.

No need to be in this much pain - unless as you suspect, there is nerve damage.  Please  .. Please .. Please don't give up.

Gentle hugs, dear Sister.

Vicki Sam

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

I agree with the 2nd opinion.  You should not have to endure the pain you are in.  Let us know what you do.

 

 

hope4thebest's picture
hope4thebest
Posts: 108
Joined: Aug 2012

Hi, I am also in recovery from a bmx but it was in July 2011.  With reconstruction surgeries, my implants went in in Nov 2011.  I am interested as to what others say because I also am in pain, still.  I am most comfortable sleeping on my back.   (I think most women feel better than we do, don't get too discouraged!!) Having the mastectomy on both sides is alot for the body, For me, yoga seems to be one of the best things to help stretch the muscles.  I try to do something every day to get the circulation going, and that helps.  Any kind of movement is good for the body.  For you, maybe the deep breathing will exercise your lungs enough to expand things.   

Lately, I noticed my posture was getting bad, hunching over.  So I am now trying to hold my shoulders back as much as possible and open my heart, pressing the sternum out and forward.  The helps me, but we are all so different.  Most of my discomfort is in the back, and I know it is the muscles.  All of these minor things can impact how we feel.

If it is really bothering you then get a second opinion from another Dr, or a different physical therapist/healer?  It helped me to speak with my dr or his nurses to get information on recovery time, maybe they could discuss a reduction of the implant size?  Either way, try to give it some TLC and try some daily stretching ( there's a book, "Thriving after Breast Cancer" by Sherry Davis that will give you ideas).  

PS: Maybe you need a new bed? 

nelliott59
Posts: 16
Joined: Oct 2009

Thanks for the kind words, everyone.  Any recommendations on plastic surgeons in the SW Florida / West Central Florida area for a second opinion would be greatly appreciated.  I have an appointment with my plastic surgeon who did the reconstruction next week and am not leaving until I get some answers!

Josie21
Posts: 335
Joined: Nov 2012

Good for you!!   Go get the answers you deserve.   Pain is not acceptable!!  

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

My advice is to also seek a new surgeon, or at least, another opinion until you get relief.

 

So sorry, Angie

muffingranma
Posts: 107
Joined: Sep 2012

I had a mastectomy Nov the 5th, and drains put in, at the end of Nov. 2012 he took out the last drain. Each time I have went back about every week he goes in with a needle and tube and drains it and still is. My cancer keeps coming back. I will have another surgery the 15 of Jan. 2013, I have had pain from after the surgery and stilll have it not sure why. I never had reconstructive surgery. Not sure this helps will pray you get better. good luck

DebbyM's picture
DebbyM
Posts: 3295
Joined: Oct 2009

Did you get to see your plastic surgeon this week?  What did he say and how are you feeling now?

 

nelliott59
Posts: 16
Joined: Oct 2009

I did see my plastic surgeon and she said she actually doesn't know why I'm having this pain as its not normal.  She said she could try a reduction - but she didn't think that would help - or just take the implants out as maybe my body just can't tolerate them.  After she said she didn't know, I told her that I knew that I needed a second opinion which I am doing this week with a new plastic surgeon in Tampa.  Hope he has more suggestions.

24242
Posts: 1407
Joined: Mar 2001

I am disappointed that still today the pain suffered by patients still goes unaddressed.

There is truly no reason in this day and age that issues like this are not addressed with all the side affects possible from every form of treatments we end up having.  It took me more than 4 years to uncover the layers of pain that I was experiencing after begging for help.  With each medication one pain would end uncovering another that another medication would help.  Yes it is true some of us do not fair very well with our treatment phase while others whistle and dance their way to work.  When I was suffering my doctor was stuck on the anxiety cancer patients experience instead of looking for the reasons for my pain riddled body.  Thankfully I was insistant on having Quality to my life and demanded action when anti depressants only gave me more side affects to contend with.

There are Pain Specialists out there and Cancer Facilities are known to have them on staff.  Doctors use to try and make me believe that this was my destiny and that this was my new norm.  I refused to spend the rest of my life suffering and soon found out that when the diseases were addressed I could return to work something they said I would never do and actually have found I can work harder than ever now a Drywall Taper at my age.  Fighting for the quality in our lives is truly worth doing and it is hard to deny.

Good luck and don't stop trying

Tara

Pink755
Posts: 16
Joined: Aug 2011

Hang in there. I had similar experience. Slept on the couch for 2 years, had to buy a bed that the head went up and had PT. But eventually the tightness went away. Focus on stretching exercises - Every Day! and  Yoga!

nelliott59
Posts: 16
Joined: Oct 2009

Thanks so much for your response.  I'm not hearing from many that have had this problem.  I do hope that time helps as you say.  I'm starting yoga classes in one week and I do my stretching exercises every day - I'm afraid to see how I might feel if I stop. 

nelliott59
Posts: 16
Joined: Oct 2009

So, I had a second opinion today regarding my pain and tightness after my bi-lateral mastectomy one year ago.  It seems I have capsular contracture on both sides around my implants.  Not many options - go to a pain clinic which I don't really want to do as I don't want to depend on pain pills.  Option 2 is having the implants totally removed and hopefully that will take care of my pain.  I really liked this plastic surgeon.  Told him I couldnt' make that decision yet after all I went through to have the reconstruction done.  Has anyone had capsular contracture?  If so, any suggestions on things I could possibly try would be very much appreciated.

survivorbc09
Posts: 4378
Joined: Jun 2009

Nellie, I am so sorry.  You do have quite a decision to make.  I had a lumpectomy, so no implants.  I hope someone else here has been thru this and can give you some advice.  Keep us updated and good luck!

 

Hugs, Jan

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