Hi, I would really welcome the opportunity to talk more to you. I am 4 years out, tons of complications and don't really know what to do any more. I've heard of a few women planning to start a private forum where we can all reach each other and I would love to find one that's current. Are you familiar with any?
where are you located
I had the TRAM breast construction in 1990 in Atlanta where the surgery was first done.
Now, 25 years later, the restriction on my breathing, like being caught in a vise, has gotten worse. I have constant pain, difficulty breathing, and nausea. I have severe fatigue and want to sleep a lot. I have developed dangerously high blood pressure that does not respond well to blood pressure meds. I wonder if the high blood ressure if from the constant discomfort or damage from the TRAM. I feel as though I am going to die. I have extreme fatigue. Scans have shown artery stenois and I can't find out if the TRAM could have caused this. Has anyone else had this side effect?
Barbara in Houston
I am not familiar with any forum - but the past few weeks have been horrible for me. My PCP did give me a script for Ultram 50 mg 3x day - I use it minimally, but find myself needing it more lately. It could be weather related as I seem to do a little better in the summer months. Keep writing and maybe we will get a few other women and we can go from there. This is the most recent I have seen. My PCP said he would work with me and to avoid getting into a pain management practice since they would be quick to put me onto medications that are habit forming. I agree, but some days I can really use the relief. My husband keeps telling me to use the Ultram more than I do and to look at it as if I had arthritis and taking Aleve for that pain. I guess he has a point - but it is not the answer I am looking for.
I live ouside of Philadelphia. I have been to Univ. of Penn for consult and was told there is nothing to be done and to go to a pain management group.
Keep writing and maybe we can at least share info on what helps and what does not. My PCP has been great. He has given me scripts for Ultram 50 mg to be taken as needed up to 3 x a day and I just started with Neurontin 100 mg at bed time and I can increase it every 3 days by 100 mg up to 600 mg at bed time. I am seeing improvement with the 100 mg. but will try the 200 mg this week. I want to move cautiously with this medication as I will get brief periods where the pain is better than others so I do not want to say it is working just yet. I would say that my pain is not as bad - may 3 out of 10 consistently over the last few days. I will keep you posted on how things are going. I kind of gave up on other medical providers - my primary was a pharmacist prior to becoming a physician so I feel comfortable working with him on this matter.
Linda K
I had a TF on my left side in 2003. I, like so many of you, got an infection. I had scar tissue that caused pain for three years. I also had mysterious rod blotches from time to time on the recreated breast and went through many rounds of antibiotics. Three years after the surgery I had an infection-like blotch that was treated with 18 days of IV antibiotics and it didn't respond. My insurance was about to run out so, two days before it ran out i had the TF removed. I'm happy to say the pain I'd had for three years went away completely. I still have all the horrible scars but Thank God, not more pain in my chest. It sounds like, compared to some of you, I'm actually lucky/
The reason I've lookd up TFs now is that I'm having terrible pain in my groin on my left side. I've tried a lot of things but can't find any relief. the woman that does DEEP tissue body-work on me says it's likely that the pain in that area is due to lack of muscular support on that side. You said you walk with a limp. Is it groin pain? Anyone else with Groin pain????
I wonder if there is a Facebook page, or a class action lawsuit?? My best to all of you!
I'm very interested too
I had infections galore following my TF. However my doctors were good though in that they informed me that my back would be problem because there would be no muscle structure in the front to support. I decided to live with it. I had MRSA for over 6 months that nearly killed me. I had one breast with terrible scarring and one that deflated because the fat used died. I guess most of what could go wrong did. I had two hernia repairs subsequently and probably need another. I was never okay. The breasts are terrible, the tummy is not straight and is lumpy and they did not make me a waist like I had before. I feel like a Frankenstein monster the way I was put back together but I do not want another surgery. I would like to have no breasts rather than this and my old fat stomach again rather than the mishapen mess I have now. Would not wish this on anyone! Melody
Have you found Scrambler Therapy yet? It's the only thing that helps manage this insane pain as a result of my bil TRAMP flap
So good to be with others like me!
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I am willing to get a dialogue going - I am 10 years out and my PCP just prescribed 100 mg Ultram SR - I take it once a day and sometimes twice - it seems to at least give me some pain relief. The other issues of distended abdomen and feeling like I am carrying a watermellon in my gut is still there, just less painful. I do not think there is a lot to be done - or at least all of the doctor's I have consulted with seem to say "oh well - live with it and go to pain management" - what an overrated type of reconstruction this has been. I wish I did nothing (I was not a candidate for implants due to having breast CA 12 years prior to my diagnosis in 2010 and the radiation causes tissue damage that makes the implants difficult and they usually fail.
Right now I do feel like I have won the battle with cancer, but have really lost a big part of my life.
Linda in PA
Its 6:25 am eastern time and I've been up since 5 am because I'm concerned about the pain I'm having in my abdomen and back . I had the tram flap surgery 6 years and 4 months ago at the same time that I had a right breast mastectomy. I too am experiencing the tightness that feels like a tight rope around my waistline. I thought my bloating and strange plump stomach area was normal and I too feel alone in this. Recently my abdomen, side and back started paining me all around theTF area and God sent me here to this sight this morning. I do wish there was a site that we can immediately log into for support and encouragement and I'm going to have my daughter start developing one. This is our community ladies and we should not be suffering in silence. We can operate like Facebook. I'm going to see my physician tomorrow then I'm going to make this happen
The statute of limitations is one year after you discover the malpractice. Not one year after the procedure. I, too, am a TRAM flap survivor but in much pain--now almost 13 years later!!
Facebook page set up - Tram Flap Sufferers!!