Charleston Bound, part 2

Hello, ladies! I saw Dr. Massey for my final appt this morning, and she pulled my second drain. Woohoo! Had my last MLD session with the LE therapist also. Actually, Dr. Massey came in and did the drain while I was there. Did I mention already that I think Roper Hospital is top notch? Well, it is the best hospital I've had the experience of using or staying as a patient. The quality of care the staff provides is super. Dr. Massey's lymphedema training and the therapists there rock! I hated to leave; I wanted to bring my LE therapist home with me! Back on my own and readjusting to therapists at home, who are great, too, but in their own way. I learned some new methods for self MLD, which is always welcome, and I was pleased when she said I was a very educated patient as far as self care. Those thanks go to Binney and Kira and all the gals on the LE forum who provided the info I needed to find a good LE therapist and have shared a truckload of info!



Well, just as I did when I first met Dr. Massey, parting brought me to tears, too. How do you say thank you for being such a compassionate and caring doctor? She talked with me about how this would be a period of adjustment and mourning for me. I acknowledged that and said that deconstructing has been like revisiting the mastectomy. She agreed and said to give myself some time. So, it was nice to have her confirm that the crying jags I've had are to be expected. I guess I'll cry until I don't feel the need to cry so much. I'm hoping things heal and look a little better, as I am hoping to avoid revisions. Revisions would mean longer incisions, which start to get a little too close to the lymphedema area on the side of my chest. And, of course, with each surgery there is scar tissue, so it's good to avoid that when you can.



Flying home this afternoon, and can't wait to see my kitty and sleep in my own bed. A few moments ago, I looked over at my husband and realized we had actually made it to the end of our journey. We did it! I mentioned this to him, and he held his arms up and sung "we are the champions". Yeah, that's exactly it. We came, we fought, got a little battered, but we won. I have been released from Implant Hell

You know, you ladies have some really great ideas.  It never occurred to me that the doctor and the hospital could be different as far as in and out of network.  Duh!!!  I am going to blame it on chemo brain.  I will keep you all posted!

Susan

Hey Fearless, yes, I am still looking at Drs. Klein and Lee in Orlando.  Having said that, I still have my appt with Drs. Craigie and Kline in Charleston and am going to call Dr. Massey's office again as well.  I am in Panama City.  Where are you?  Have you talked to their office yet?  Yolanda is the person I talked to and she gave me general information but nothing as detailed as Chris in Craigie/Kline's office did.  Also, they will not do an initial consult on the phone like Craige/Kline will.  You have to go there in person.  Keep me posted as you make your decisions.  What time frame are you looking at?  I will probably stick to a November surgery date because my work is typically slow during that time and it will be easier for me to take more time off.

I didn't get a chance to post this last week but I had an appt with my oncologist on Thursday.  I was getting the results of my PET scan so my husband went with me.  I posted early on that my husband is not on board with this at all because I have gone through so much in the last six months.  Anyway, the oncologist asked me about my reconstruction plans and I told him I was looking at DIEP surgery.  He totally bashed the surgery in front of my husband.  I was SO mad!!!!  He said that ALL of the women he knew that had gone through the surgery regretted it and would never do it again.  He said that I need to look into implants here locally and not put myself through such a big surgery for something I will be miserable with.  So, I told you all of that to say that we are also going to consult with a local PS about implants.  At this point, although I have spent two months agonizing over it, I still have not made any decisions. 

Susan

Fearless, as far as the traveling goes I am worried about that too.  Southwest flies from Panama City to Orlando for $79 and M.D.A. has a hospitality house with 16 rooms for $40 per night which includes 3 meals a day.  I see that you had a PBLM on 4/05.  Did you have any reconstruction at that time?

Susan

Fearless, what part of Florida are you in?

Bennetts, so your total hotel stay was only 5 days?   That is fantastic..... 

How dare that surgeon bash DIEP. I would run and run fast from any surgeon who would bash a well accepted procedure. There are thousands of women who have had the procedure. It has no where near the 50% failure rate of implants. I spoke with well over 20 PS on the phone or in person and not one of them bashed any of the Flap surgery options. Every single one felt it was a good option whether they could perform it or not. Of course many of them pushed to do the TRAM or LAT procedures because that is what they were capable of doing at the time. In fact everyone one of them said that they would not recommend Implants for me due to radiated skin issues (and I was 3 yrs post radiation). When a Dr. bashes a procedure that has been well accepted I would be very wary of them. In fact I would discontinue my relationship with them immediately. There are too many other well respected physicians out there to listen to someone with such negativety. If A Dr. provides you with actual reasons and or issues, that specifically pertain to you, to not recommend a certain procedure for you (ie: you smoke, you are diabetic, you are too fat or too skinny, you have heart problems, whatever....) those are things to pay attenetion too. Not 2nd hand stories about women who wished they never had it done. Check out all the women who are having there implants removed on this site.

You need to be the one who makes this decision about the surgery not your husband. You are the one who has to live with the results. Be Strong.

I'm guessing that the oncologist is connected with a medical system that doesn't provide that kind of surgery. Hospitals are businesses, too. My breast surgeon who performed my mastectomy (and was my third opinion) was excellent, and I loved the way he explained everything and took a lot of time for me. He asked his assistant to set up appts with onco, rad onco, and two PSs. I was so relieved to have this responsibility lifted from my shoulders after months of trying to get through the diagnostic process with a different doctor. He sent me to the top docs in each of those fields - within their medical system. It happens that I was using a very good hospital, and all these docs are well respected, but still, in hindsight I realize I was steered along a path that their system provided. It was fine because I had determined I wanted implants, and I'm fairly thin and didn't want to mess with other body parts. However, when it came time to getting proper attention for my truncal lymphedema, I hit a brick wall. Only one PT was LE trained but not very well. So it took going outside the system to find a local LE therapist who was qualified to help me. When I asked my breast surgeon for a LE therapy script, he wanted to send me back to their therapist and I refused. He wanted to know where I wanted to go, so I showed him the two names of therapists who were part of a different system. I could tell he was visibly annoyed but I didn't care. He and my PS had been denying I had LE, but I knew they were not only wrong, but unknowledgeable. The new LE therapist took one look at me and said I definitely had truncal LE.



When it came time to deconstruct, I had consultations with three doctors, two local and from different hospital systems, and Dr. Massey. She did a 1 1/2 hr phone consult with me after sending her an application form and photos. She was the only one who talked about repairing the dislocated muscle, the only one who is knowledgeable about LE (and has done the LANA training) and tailored her surgeries to be proactive in preventing LE, and for working on patients who already have. No arguments about doing neck IV, BP in calf, arms wrapped for surgery, and MLD therapy pre and post surgery. Only one local doc offered MLD therapy pre and post surgery, which was outpatient. He couldn't provide anything else.



So, I think I've mentioned that this has been a financial burden for my husband and me, however, it is nothing compared to the potential costs if my LE were to worsen and need treatment. Not to mention the additional physical pain and suffering of LE. I thought long-term and what I knew was right for me. My husband wasn't happy at first, but after calling and talking with the office himself and then meeting Dr. Massey, he was very happy with our decision.



There are immediate costs and then there are long-term ones, both financial and physical. I haven't done the complex surgeries, but I will tell you you know when you are in the best hands. Worth every penny.

Journey, what a nightmare - so sorry you had to go through all that - glad to know Massey was able to help you.   If my implants fail, I might go to her.   

May I ask, was insurance ever an issue when you had to go out of state for Massey?

Thanks, Journey....I guess my next hurdle would be whether I am even a candidate.   I was told by some local DIEP docs that I didn't have enough belly, but when I look at the NOLA pics, some of those women appear to be my size, so I  don't know....I am about a size 10 pant size?   But I want at least B cups.

25K!!   Holy Cow.....I would have to cross them off my list, too.   

Susan, I got another Florida name for us - Dr. Jason Rosenberg in Gainesville (I guess he is out of Shands)?     I did a search on some old posts here and the ladies who have gone to him are very happy.....

Yeah, I'm a size 10, too, but I would be happy with B's ...   I am size 10 about 140 at 5'5  1/2.

I agree - but ultimately is has to come down to insurance coverage (at least for me).    And if NOLA tells me my portion will be 25K (as they told Susan), they are off my list.  

So few surgeons perform all the free flaps, it's really just a handful of them.