NOLA in September?
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I just scheduled PT for my tight ab fascia. I can't say exercise alone has helped, it just makes it more noticeable and more painful. Hopefully there's something else that will help. We will see!
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Michelle I can totally relate to being a lurker and not posting often. I too am finding the waiting difficult and I Am so scared. My surgery was scheduled for June but I choose August to have my summer and my son's wedding. Dr. M and. Dr.S will be the PS and Dr. LeGarde the BS. Reading about everyone's recovery has made me nervous. I don't consider myself a pansy either. What brave woman on here. They inspire me. Does this get better. All logistics are done.
What is the FORCE?0 -
Caitlin B, I should have added your fix up to the list! I am glad you are okay! Holes no more! Nice that you and Adey could meet up!
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"The FORCE" love that! FORCE is facingourrisk.org. It's a support org for people at high risk for breast and ovarian cancer.
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Brenda, the PT will help the tight abs. I hear some PTs will address only the very specific area the one complains about. But mine treats the WHOLE body. So, for me, I have other body issues that are contributing to my pain and discomfort (hyper mobility) besides the surgery. I have some lower back pain that can be related to the ab scar. I have rib pain from BMX. Each shift in body position leads to another body shift. I think I may be more sensitive than others. I have a chiro appt and PT appt tomorrow! I have stretches I have to do daily.
Betsy, my PT worked with me on strengthening my core after stage 1. My belly is so numb from DIEP. I had to re-learn how to use my ab muscles correctly. Now, I was a competitive athlete through college (but major slacker the last 10 years) and I thought it was absurd that I wouldn't know how to use my abs correctly. But it was explained to me that due to the nerve damage that my brain would have to learn a new pathway, and it did. It's hard for me to explain, as it's not really my 'language.' I was not utilizing my internal ab muscles and would sort of use my whole body instead of isolating movement.
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Chellehump- feeling nervous is all a normal part of all of this! I remember being nervous, wondering if I was doing the right thing, but I really wanted boobs!! It will all be okay. I know that it probably seems so daunting reading here. Complications do happen, even with the best of surgeons. But really, you are less likely to have them when you have the best! Please consider ALL the women from all over the country that go to New Orleans to have their reconstruction! I did not have any major complications (except the usual fatigue and some nausea) with either of my surgeries. I had to have my seromas drained... I thought then and I think now, "So what!" it was just a few bumps in the road. And I had hip flaps... And I LOVE them! Hang in there! It will be okay! You PM me anytime with any questions.
Okay, ladies, I just heard from Glostagirl today. She has been in the hospital after having surgery to repair her femur. She had an accident skiing the 4th and is currently in rehab. She is thinking she may go home on Thursday. Please send all of your prayers, positive vibes, and anything else you can think of, her way. She is hoping to be healed enough to have her surgery in June, so fingers crossed!0 -
Who asked about the symposium with Dr. M?? Can't remember! But I went in February and it was fabulous. So much information. She is a very good speaker and mixes humor in with all the information. You will love it.
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Betsy - they cut the muscle? Really? First I have heard that - but it explains a lot more. I am still swollen in the upper belly. I try to ignore it. I am doing an hour of Tae Bo 5 days a week and walking 2 miles a day. I can still feel my abs when I do anything that involves them (which is just about everything). I truly thought that at 9 months out from Stage 1 and 5 months out from Stage 2 that I wouldn't feel that tightness any more. But if they cut that muscle - it does make more sense. I'm sorry to hear that you are having pain. I have not experienced that - just the constant tightness/pulling. I hope that it does get better quickly.
Good luck to all of the surgeries coming up. And for those waiting - hang tough! It is VERY hard to wait but it will be here before you know it!
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Ladies, with all due respect.. It has always been my understanding that the abdominal muscles are gently pushed to the side and NOT cut, to gain access.
I must caution you that EVERYONE heals differently. Trust your Docs.While we all here to offer love and support we are NOT medical professionals. (Although we might have slept at a Holiday Inn last night
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I will caution all yet again and ask you kindly to remember that when posting please consider that newcomers might take your comments out of context and perhaps be unduly alarmed. It is simply not right!
To the newcomers, please do not take all comments here as "gospel" and check with your primary surgeon regarding any concerns you might have.
Marcia
Marcia0 -
It's true that everyone heals differently. But I believe our experiences here represent a pretty dependable spectrum of experiences. A caution is good for people who haven't yet been through surgery and are worried about what to expect--you should always expect the best until reality proves different.
But in reality, someone having this surgery could have an experience similar to mine, or Betsy's, or yours. When it comes to some things we aren't *all* special snowflakes
Some of us will have very similar experiences. 0 -
The NOLA docs pride themselves on NOT resorting to cutting muscle to perform free flap surgeries. It is true that other less-experienced surgeons frequently find it necessary to do this and therefore convert to a free TRAM in the process. I would encourage all to please contact the Center if you have questions about this issue. This is one of the advantages to those lucky enough to go to NOLA: one which sets the NOLA docs apart from the rest!!! Dr. D has explained their approach many times on his bulletin board. He recently stated that they take intraoperative photos to document that muscle has not been cut. Nearly everywhere else you may go to have DIEP, you have to sign a consent form that includes agreement to having muscle cut if the surgeon is unable to proceed without doing so. That was one of the reasons I didn't choose to have my surgery at UCLA.
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Oh Boy... didn't mean to alarm anyone... THE MUSCLE WAS NOT CUT, JUST STRETCHED OR PUSHED TO THE SIDE TO ACCESS THE VESSELS. I fixed my post above also.
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I meant to post on this last night, but forgot while posting about our friend Glostagirl who is in the hospital with a fractured femur (which is a really big deal, since the femur is the largest bone in your body, and is very important for all weight bearing activities - walking!). Anyway, no! The muscle is not cut in a properly done DIEP! I am not sure if they have to make a tiny incision in the fascia (this is a connective tissue that covers/surrounds the muscle) to get to the muscle, but once there, it is my understanding that they carefully tweeze through the muscle to access the blood vessels. The docs at NOLA are very meticulous when performing reconstruction and take pride in not having to resort to the use of muscle to obtain a successful reconstruction. It is true that we are all here to share our experiences and support each other. But this is one way that sometimes misinformation gets passed on and causes some fear and panic in some of the women that are just starting this journey. Yes, there are complications. Even with the best surgeons there will always be risk. That is why they go through everything with you ahead of time for ANY procedure, with any surgeon, and have you sign a consent form. Having said that, the better the surgeon, the less risk of complications... But that risk will never be zero. And if anyone is concerned that I may not have a clue what I am talking about, My degree is in physical therapy. I worked in a multitude of settings -primarily acute care in the hosptal setting- for 13 years prior to having cancer and my kids. I can tell you from experience, even the very, very best doctors will have patients that have complications. It just happens much less often than the docs who, uh, let's just say, are not so great. I know we have a few nurses in this thread that I am sure will tell you the same thing. So, I am just saying, yes, be supportive, yes, share your experiences, but let's try to remember when giving advice that we might want to state what our opinion is, rather than stating something as fact. It is one thing to say, "this has been my experience" (good) vs. "this is what I think you should do". And then encourage people to check with their doctor. I don't know about you guys, but I sure would hate to tell someone the wrong information and then have them make a decision solely on what I said. Anyway, I am off my soap box now. I hope I don't come off snooty and mean. This is not my intention. The only reason I stick around here is because I really want to help. I write letters on a weekly basis to my elected officials to try and get them to improve the current reconstruction laws. This is an issue that is so important to me and I am here to support women in their reconstruction process in any way I can. So... Now I have run out of words! Lucky you!
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Yikes...betsy maybe put IMHO b4 haha...
Wanted to ask for opinions on chest pain.....I am very tender in my sternum area and under my breast (wear bottom of bra rests) I did start PT about a month ago (2x week) and have been lifting light weights and she did have me on balance ball on my stomach....well let me know how you all feel....thanks ladies
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Nordy, if you're referring to my posts (not sure you are) then you and everyone here should know that I wouldn't ever say "do this" or "you should do this" unless it's said in a friendly, joking way, with the knowledge that the person I'm speaking to knows I'm not a medical professional. Also with the knowledge that that person is not a total stranger to me. I don't recall doing that, to be honest, but I think in general people on this thread are pretty good at treading carefully on the "this is not medical advice, check with your doctor" tightrope.
Sometimes, someone asking a question in the vein of "what should I do" or "what would you do" colors the responses with an unstated "you should do X". So, to be fair, people should be careful about how they ask questions too, don't you think?
Bottom line: we're all adults here. I would hope that people visiting an internet message board know to take everything they see on the web with a grain of salt. If they don't, well, they've most likely got bigger problems.
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Lol! Have you been doing pectoralis exercises or a lot of pec stretching? I have found that since having my initial mastectomy - not even since having reconstruction, that I feel more pec discomfort and feel it differently than I did prior to my surgery. So... THAT has been MY experience....
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Jeskachi. No I was not referring to you, but it is good to know that I managed to completely and totally offend you when I said that was not my intent.This is just a general statement. And I think it would be great if people did not ask what they should do, but most newbies with BC or even considering reconstruction are often so overwhelmed that this is the route they take. I am sure the last thing they are thinking about is how they word their questions. I know that wasn't my concern when I started out.
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PS - did not mean to put you on the defense this morning. Not sure why you think I would be referring to you...
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I'm sorry. Some people DO take things they read on an internet board to heart - unfortunately. And you are right, they DO have problems! It is called cancer - or the genetic potential for it- and they are overwhelmed and scared and looking for someone to talk to and get advice from... Because maybe they don't have friends or family that can relate to what they are dealing with. And maybe they might think that some women who appear very well spoken and knowledgable might know what they are talking about when the reality may be very different.
Regardless, Jeskachi, I have never had a beef with you. I am not sure why this has gotten you so fired up this morning...0 -
Glosta,
If you're reading this I just want you to know that I'm sending healthy, healing thoughts your way! I'm so very sorry you've had to deal with a broken leg on top of everything else..
Gentle hugs,
Marcia0 -
Nordy... Actually I wondered the same thing... if you were referring to me... I always tell MY story and never tell people what they should do... I have been asked a lot what should they do, and always try to preface with "everyone is different, but if it were me...." and "ask your doctor"...
I also apologize for using the word CUT in an earlier post... I knew Laura never meant cut and remove, and referred to her explanation of "teasing" the vessels from the muscles as cut... It was the way she said it to me, and I knew what she was saying but relayed my message poorly. Bottom line, my muscles were manipulated (as with all DIEP patients I presume) and they are sore and having a hard time healing... She recommends exercise and ifit is still a problem in the Fall at my consult with Dr D, we will discuss what's next.
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Betsy, it is a general statement. I include myself in it, you know...
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Iamthe one who has asked about seeing Dr. Marga at a symposium in Chicago. I thought it would be a way to see her and meet her before my surgery in August. It sounds like it is worthwhile and will attempt to attend.
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Well, I haven't been on the board for awhile and I thought I'd drop in to give a quick update on what little progress I have made with getting approval of facility use and Dr. Sullivan. Dr Massey is in network...... I am contacting a lawyer this week but in the meantime I spoke to Cigna(SMIGMA) :)today and was told a "peer to peer" appeal must take place between Dr Massey and the Physican with Cigna who turns down the appeals. Never knew anything like this existed. I don't have a good feeling about this but who knows! Nordy, where was Glostagirl skiing? Do you know which hospital she is in? Hugs to you and all of you gals for your support! katiejane
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May I be a puny whiner for a moment? I've come down with something - fever, chills, aches, sore throat, congestion. It feels like a cross between a cold and the flu. None of the symptoms are dire, but I'm just feeling pitiful. I called Jeanine and she talked to Dr. Trahan and they've put me on Augmentin and Tylenol Cold Remedy. Probably picked it up at the gig Saturday night - it was packed, but honestly, I can usually fight off anything.
<sniff!>
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<sniff>
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Hi everyone, Got released from Nola yesterday and drove about half way home today. I can't wait to get in my own bed and give DH a break from nursing care. Also, miss my kitties and horse.
Met Adey yesterday....fabulous. I am sending her prayers and healing hugs tomorrow.
Cailin, I'm so sorry I missed you....I would have stopped in after my post op appt. Healing hugs your way too! Stay tough and lean on your support.
For the ladies coming up for surgery. It's so normal to be scared. I just trusted in my choice of physicians and felt so strongly I was making the right choice for me. It's a trip but surely one that can be done. Lean on these strong women that have "been there done that". I surely did and would not have gotten here otherwise. YHANK YOU. Jamie
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Are we all okay here now?
My understanding, the ab muscles are like vertical curtains, they are gently "teased apart" I think.
Honestly, for those of you having surgery upcoming, I would suggest try not to thing about the detials! I made the mistake of watching the Beth Isreal Surgery thing online, and could not get it out of my head! I think listineing to the "Successful Surgery" CD noted above in the notes, (or other meditation or centering or prayer techniques) and trusting that you've found the best place in the world will help! It is normal to be scared and even unnerved. But if ya want boobs, this is the place to go!
I remember getting so worked up that all I wanted was for the surgery to be OVER, to be on the other side so I just had to heal and not worry about it anymore. For stage 2, I remember waiting for my surgery, all hooked up to IV, and thinking, i should just run away! (HA!)
Downey says it best! And I am so glad you are feeling okay!
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Nordy, thanks for the news about Glostagirl!
Glostagirl, if you're reading, this really sucks and I'm so sorry it happened but quite thankful you're doing well post-op. Hell of a way to end your ski season...
Jeskachi, I hope the PT helps. Myofascial release ain't fu, but boy it helps. Got to get you doing Swan in Pilates soon!!
katiejane, I'm sorry, but I'm confused. Dr. Massey's in network for you, but the Center is not? You could have Massey & Sullivan at Fairway. Or is it that you want Sullivan & DellaCroce? I missed something along the way...
Downey, safe travels. Your bed awaits!!
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Dana, I think it's great you are doing the yoga sessions for the FORCE conf. I am going to have to see if I can go this year. I love going to seminars, meetings, retreats, etc. I really wanted to go to the C4YW in NOLA last month, but it just wasn't do-able. At least I can listen to the podcasts on the YSC website.
The waiting can be difficult. I find that if I'm 'waiting' too much then I need to take extra good care of myself: what I eat, who I talk to, how I'm spending my time, exercise, sleep, etc. There is always something to wait for; I have to be careful not to put a lot into waiting and shift that lull into patience.
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