6 years after BiLateral Tram flap, increasing pain, Back pro

Dear Mihah, 

I am sorry if I offended you, that was not my intent. I was only pointing out how LUCKY YOU ARE. I pray things only improve for you. And that your surgery, complications, and cancer, improve for you as time goes on! I am wondering. If the staging of all of our cancers, length of time on chemo, radiation, and other treatment of our original cancer, may have a connection to how our surgeries turned out?

i was stage 3 B, had 3 different types of chemo, got chemo poisoning, as well as 4 months of rads. (Every day.) I'm sure this would be an interesting side note to the nightmare.  also, our ages. I was 39 at time of 1st diag. Cancer and tumors, very advanced at time, and oncologist insisted on doing chemo immediately. And initially told I less than a year, without treatment, and mast. I am 4th generation breast cancer. With brain, and pancreatic, as well as intestinal cancer on mother's immediate family side. My dearest mother died from pancreatic cancer several years ago. After surviving breast, (twice) lower intestinal, and then the panc. Her brother primary brain cancer, took him after 18 months.

mihah, may I ask you age? And all of you: your general health at time of procedure?

Prayers and positive thoughts for ALL! No matter the severity of your condition! We are here to support each other. As well as try to acquire some help and direction!

 Happy New Year!

amanda l.:-D

AMANDA: I AM 59 YRSOLD WILL BE 60 NEXT MAY...I HAVE TRIED TO STAY IN GOOD HEALTH...I HAVE HAD ONLY MINOR INJURIES THRU OUT MY LIFE-TIME..I TRY AND WALK ATLEAST 3MILES DURING SUMMER MONTHS AROUND THE LAKE HERE....IM NOT EXTREMELY SMALL /IM AVERAGE. I HAD 6 ROUNDS OF CHEMO AFTER LEFT MASTECTOMY/ AND 28 RADIATION TREATMENTS...NO ONE IN MY FAMILY HAD ANY CANCER , SO WE WERE SHOCKED WHEN THIS CAME UP WITH ME.... I WAS NOT EXTREMELY SICK AFTER CHEMO TREATMENTS, BUT I DID FOLLOW THRU ON STERIODS WHICH HELPED ALOT.... MY DRS. STAGED MINE AT A 3 BUT TREATED LIKE A STAGE 4....THATS WHAT DR. TOLD ME... IM SORRY TO HEAR THAT YOU HAVE HAD SO MUCH TO DEAL WITH ...THAT SADDENS ME AS U KNOW.... MY PRAYERS ARE CONTINUOUS WITH ALL OF YOU WHOM HAD SO MUCH SUFFERING WITH TRAMSFLAP...IM HOPING I GET THRU IT ALL OKAY....NO, I WAS NOT OFFENDED ( LIKE YOU THINK) I JUST FEEL EVERYONE HERE HAS COME HERE TO FIND ANSWERS TO HELP JUSTIFY AND EVERYONE SHULD BE CONSIDERATE WITH EACH OTHER... AFTERALL....WE NEVER KNOW WHAT KIND OF DAY ONE IS HAVING... HOPE I HAVE ANSWERED YOUR QUESTIONS....MIHAH

I had 3 different types of chemo. The first and second being 8 rounds each. The third was Taxol. This particular chemo, from others I have spoken with, including health officials, and those receiving it, is horrific. I only had 4 treatments of this one. As I got permanent nerve damage, as well as chemo poisoning, which I was hospitalized for 3 weeks while they flushed the system. As I was close to death, and this type deposited itself on joints and bone. (Pelvis,etc)

I'm hoping this goes to all posts, and not just our conversation. Not sure how this site works! For anyone else. Can we hear of your experiences with treatment? To see if there is a connection? Also, place of treatment. Meaning state or town, city, county. I was in cal. San Diego, to be exact. So received great treatment from oncol. Not so pleased with plastic surgeon, general surgeon. My onc. Was at Scripps La Jolla. He saved my life. Was second oncol. As the first was terrible. You are right about how crappy ones day may be. If I told you the other circumstances of my life, you would shudder. I am living in N.J. Was Hit by Hurricane Sandy. We lost our house, was in shelter for 3 weeks. That's just a small portion... So forgive me, if I have got off on the wrong foot with you!

peace and blessings,

Amanda L.

sorry if I post this twice!

As a tram-flap survivor, having to go through the cancer treatment was actually the easiest, as perhaps it was for many. The unfortunate concern here is that this surgery has traumatically affected all of our lives, the constant stress, endless therapies, while doctors that have done these procedures walk away. The way most of us were treated by the physicians, acting as if nothing was wrong, yet most of us have debilitating issues from this, and to be honest I cannot continue to financially survive. Not only did this happen, my husband also filed for divorce in between all of this, I lost my health insurance, cannot remain on my much needed therapies and this has been horrid.while raising two children. All I can say is that there is a bigger purpose in this, and we need to speak out. Anyone knowing a respectable person who could expose this, needs to step up and connect with all of us. I have been trying, but I think we need to make more attempts. I believe then, perhaps we can come together, get expert opinions, and perhaps have hope for our futures, I don't believe this is completely hopeless, we need to gather forces!

Hi Bonnie, It is hard to find help as to date no one I have met in the Medical field has acknowledged any of our issues. Can we all take the time to reply telling our story. Meaning what type of reconstruction was done i.e. Tram Flap, Lastissimus Dorsi ,Diep, Siea Flap, Igap or Sgap etc, was the reconstruction 1 or both breasts, was your stomach muscle removed and Mesh inserted into the abdomen to cover lost muscle and if so are you suffering Mesh issues as well. I do not wish to upset anyone but I am trying to understand like we all are where it is all going wrong, is it just women who had there tummy muscles used that are having problems or are there women who have had the Latissimus surgery suffering as well. I feel that if no one wants to help us we need to start helping ourselves and that means we need to try and understand who is suffering what. And I think we need to try to understand why there are women who have have both types of surgery Tram and Latissimus and have walked away FINE with no issues, no pain no nothing. I know I am asking a lot and if no one wishes to do this I understand, but this is the only site I have found where we all seem to be in the same boat which is comforting for me as I was feeling so alone. I am hoping that we can all pull together and see if there is some sort of common denominator that has brought us all to the same place. I apologise in advance if I offend anyone with my suggestions. Kind regards Rose

My surgery was a tram flap that took a large portion of the rectus muscle. The surgical site then tore and the muscles needed to be reconnected and it was a mess, literally. I have a large area where you can actually the divet in my abdomen where the areas were removed. My right side overcompensates and you can easily see the bulging mucular defects. The pain issues for me come, with most movements, my rib cage is affected since muscles do not surround and support like they normally should. The abdomen muscles are pulled drawn down tight making it feeling like I'm in shrink wrap.. only way I can explain. It has been a snowball effect since one area compensates for another. After years of this myofacial tightness it has also affected my back and neck because of the strain in the abdomen. Mesh was possibly used, but then taken out because of comlications.

Hi Bonnie, Thanks for sharing. Mine was a Bi Lateral Tram Flap. I was told that a portion of muscle would be used along with fat and skin from my tummy to create two new breast. Whilst in theatre pre op I was then told they were going to be using Mesh and that it is used all the time and it will be fine. I knew when I woke that I had issues with the right hand side hip/groin area. On day 7 I was told to get out of bed and walk. Well I was not able to stand up straight, the best I could do was walk hunched over and I limped because my right leg was twisted. As time went on the tightness got worse, my surgeon called me "gutless" as when I explained to her I could not stand properly she replied by tellng me I was "weak and gutless" Since then every movement feels strained, the tightness running down the middle of my body (ribcage) is so uncomfortable. My stomach feels as if it is constantly being pulled down and it sticks/bulges out which I am told is the Mesh. I had to have more mesh put in to release some tension on the right side so I could move my leg properly. I have a trapped nerve in the right leg/groin area and my pubic mound is "right out there" meaning it really sticks out this is due to the mesh. Like you Bonnie my body just cannot move like it used to, the pain is constant and the tightness particularly around the abdomen is never ending. I have had like you physio and what i find is if I stretch it relieves some of the tightness for a while, and I am talking few hours but before I know its all back with a vengeance. If you have Mesh it cannot be removed as there is nothing else they can use in its place at the moment. So please check and confirm that you either have it or your don't. I have now discovered so many bad things about the Mesh that I was never told about and had I known I would have declined this surgery. Bonnie if you had tram flap on one breast you may not have mesh but if both breast were done and muscle was used then my understanding is that mesh is used to keep out stomach in place so we do not get a Hernia. If the Surgeon had properly informed me of the procedure and all the possible negatives I would have stayed with implants. i did this because I had so many issues with the implants, encapsulation etc and I was so tired of having to have them re done that I was led to believe this was the perfect solution. The joke was on me. I would take my implants back any day compared to what this surgery has done to me. Thank you so much for sharing your story, I feel that if others chose to do the same we may read something that can maybe help us or others in finding help or solutions. 

 

The one thing I am not sure I can explain well is that I was sewn together so tight and as we all know we are sewn back together in a semi seated position on the operating table that when I did try to stand the skin/leg muscles in the lower front half of my body below incision line would be pulled up each time I tried to stand straight. After 1 year of pulling my body up and up and up my body from the back half of me meaning hips down actually ended up elongated meaning my bottom fell about 2 inches and now when I try to wear pants/shorts they sit weird because my body was forced to stretch in a way it was not meant to and if you look at me side on you can actually see how my body was forced to adapt so that I could stand as close to straight as possible.  I am not sure you can understand what I mean but I hope you do as I have never really said this part out loud.

 

Thanks for letting me share my story.

 

Rose

I understand everything you posted. The details are also a way we can share and heal at the same time. I also recal how the doctors made me feel, the pain going down the leg, the tightness, most of symptoms were "unexplainable" often leaving me feeling like they thought I was exaggerating, I wasn't, everyone avoided, many physical theapist could see how I'd have to move, yet couldn't explain the horrifying results. I believe this will be healing to others who read this, because if you haven't had this happen to you, it often is unexplainable!

Hi Bonnie,

I am hoping we all benefit from this. You are right, no one in the medical community meaning Doctors acknowledge our issues.

Our physiotherapists understand, they can see and feel the tightness and tension our bodies are enduring, yet NO DOCTOR CAN? WHY?

I have lost hope with the Doctors, not one of them seems to be able to see or feel the tension, and have you found that when you ask them have they heard of these issues before they all say NO.

Do you think you have the Mesh Bonnie, I feel that maybe the Mesh plays a huge part in this and I would be interested to hear from ladies that either Do or Do Not have Mesh.

I know we are not imagining our issues/pain yet sadly no one I can find is interested enough to want to try and help me find a solution.

Rose

I also have been part of myofacial theapies and John Barnes, who initiated a therapy based on muscle movement and the role myofacial connective theapy plays a part in healing after traumas of any sort. Most in the medical community DO NOT WANT TO acknowlege what has happened to us. What we need here is to have someone that would get our stories and get this into the news media for exposure. People would come forward that perhaps could help us in some way.. being silent about this is the worse thing we can do. Once we find more we need to help connect to exposure to this... keep lines open.

I have been trying to reply for hours but this site tells me each time I press send that I have posted TOO MANY TIMES,

 

WHAT IS THE POINT OF THIS SITE

 

WE CANNOT SHARE ANY VITAL INFORMATION LIKE EMAIL ADDRESSES, WEBSITE INFO, DOCTORS WHO MAY BE WILLING TO HELP.

 

SO ALL WE CAN EVER DO IS WRITE ABOUT OUR ISSUES, SHARE OUR STORIES - THE END.

 

SO REALLY WE WILL NEVER ACHIEVE ANYTHING HERE, WE CANNOT MOVE FORWARD, AND IF ANY OF US EVER FOUND A SOLUTION OR SOME FORM OF ASSISTANCE WE COULD NOT TELL EACH OTHER.

 

WE WILL FOREVER BE STUCK IN A VOID OF GOING NOWHERE.

 

AM I THE ONLY ONE WHO THINKS THIS IS CRAZY!!!

 

Rose

Yes, I do understand all that you have said. I believe many of us feel that we can help others by sharing our experiences and hope that this can be related to others as well. However, if there is a way, and there may be
I will let others know if a story is released and the media can then contact or post about the story and help
can be relayed in ways that is not an option on this site. This is how we get through the avoidance of everyone
being "quiet" over all that we have had to endure. If our numbers increase, so does awareness. Please remain
hopeful.

Hi, I don't know if you will see this or not but I want to thank you for the information on the Squeem. I will look for it and buy it!! I am a year out from my surgery and my stomach is very large. I wear two sizes bigger in a top so the protruding tummy looks a little less noticeable. it can get less "full" every once in a while, like in the morning when you first get up but my doctor told me that just with walking it will expand. I am often short of breath.

I think this has caused depression for me and therefore I eat at night. This just exacerbates the problem so I was encouraged when I read your post and others who are experiencing a bloated stomach. Men can get away eith anything as far as a tummy is concerned but for women it is a difficult pill to swallow.

I am single and 62 years old (I was married and have 3 children). Looking like this I don't even entertain the thought of dating so it's a pretty lonely existance. BUT thanks again for your encouraging post!!!

If you get this brought out into the open please let me know. I also would never have had this surgery. I was out and out lied to as far as I'm concerned. Just think of the money the surgeons and hospitals make on this procedure. Women should be screened to see if this surgery is the best way to go for their body. There must be some way to figure this out prior to surgery. My stomach is huge as well as my pubic area. I have no plans for ever dating again. What man wants disgusting intimacy.

most of the women posting here do NOT have a flat tummy and great looking breasts as a result of this surgery. I wear tops 2 sizes larger so i don't walk around looking like a 62 year old pregnant woman. My stomach is huge. it looks like someone used a bicycle pump to blow it up. when i eat a meal it inflates unbelievably----you are one of the lucky ones--the rest of us are marred for the remainder of our lives. I'm happy for you that it worked out well and you are living as normal a life as possible after such a big surgery but for those of us that didn't "luck out" life is lonely and depressing.