Charleston Bound, part 2

SAMayoFL

Brenda, woohoo!!!!  You are the only other person I know of so far that have used Drs. Klein and Baron.  They are the same team and hospital I am signed up for.  My surgery, however, is not until November, although that may change if my onc. releases me at the end of this week.  I can not wait to hear about your experience.  Where are you?  Are you traveling?  Have you already met the surgeons?  Please stay in touch and let me know how things are going.

Susan

Del11

Brenda- Do you mean Kline?

bennetts1

Thanks ladies for the support.  The itching was very intense yesterday.  I was about to go out of my mind and ended up taking one then had to take another valium.  Finally, the itching went away.  This morning it was back again, but not as intense.  It helps to apply pressure to the area.  Anne, your explanation does make sense, but why is it happening in the mornings?  It would be wonderful if I am getting feeling back in that breast!

AnneW

Sandy, not sure why it's happening in the mornings! And I can't really say that you'll be getting any significant feeling back (though wouldn't that be nice!) It may be that the nerve is just finally losing its mind completely, and shorting out...

Glad it's not as intense, though, whatever the heck is going on!

heatherbless

we love you sherri always!!!!!   IT ALL STARTED  WITH YOU1!!!   LOVE HEATHER

Journey

Snobird - Wait, at 5 weeks post op stage 1 you were downhill skiing?  Wow.  I thought I was doing great at 7 weeks going back to very very light weight training.  Crap, at six weeks I was just released to use a broom or vacuum by my doctor.  You're one tough gal!!!

SAMayoFL

Sandy, I am curious with your itching how long ago your DIEP surgery was.  I had a mastectomy in September, 2010.  The back of my arm is still totally numb.  Every once in a while I will get an itch way down inside like you are describing but I can't scratch it because the surface is numb.  Like someone else said though it is nowhere near as intense as what you are describing and it lasts only minutes.  I hope you can scratch your itch today!

Snobird, every time I doubt my decision, which seems like happens daily, can you repost your story to reassure me?  LOL!!!!!  I was really active before BC.  I walked last night for the first time in 6 months.  It took me almost 30 minutes to walk 1.5 miles but by golly I did it!!  I am really trying to get myself back in shape before attempting this surgery.

Sherry, we are all thinking about you and praying for you.  Please post an update soon!

Susan

Del11

Based on what I was told, just because you feel *up to* doing something before 6 weeks doesn't mean you should. Most people feel better before then, but the activity restrictions are to protect the flap from injury. If you have clearance from your doc, by all means, go for it. But get that clearance first.  Even then, think about what a flap failing at 5 weeks would entail. Not fun.

Snobird

Journey- not so tuff just motivated. I love to ski and my DH and I had month long trip out west that was bought and paid for. My PS said I could start out easy at 4 weeks but I wasn't ready at 4 so one more week and I was jonesing to go. I had to keep it easy on blue groomed slopes but by the end at 8 weeks I was doing black diamond powder runs. Just hung up my skis for the season. I believe that all that activity everyday for 4 weeks is what kept me from gaining weight and loosing mobility. I was very in tuned to my body and knew when I needed to dial it back or rest. On none ski days (about 2 per week) I did yoga for flexibility.

Journey

It's funny how all our doctors are different in what they allow and when after surgery.  If I told Dr. Massey I wanted to go downhill skiing I think she would have personally gotten on a plane to strangle me! LOL.

Glad you had a great trip and a good season of downhill.  I just hope to get back to some sort of yoga / Pilates/ martial arts stuff once I am healed from stage 2.  But of course I have to deal with my lymphedema issues so martial arts is probably not in the cards anymore... I'll find something!

LindaG47

 Brenda (jeskachi)  I think the other Brenda is referring to Kline and Craigie, but Baron is the regular surgeon that may be doing her mx.  BrendaLee can confirm, but this was my take on it.  I had Massey, Craigie and Grice.  Grice did my Proph. MX.

SAMayoFL

Well girls, I may be heading out of the Charleston Bound thread.  I have contacted Drs. Klein and Lee at M. D. Anderson in Orlando.  They are so much closer to home and the stay is much more doable for me as far as transportation, lodging and, in general, the cost of the trip and stay.  I haven't made up my mind but I am thinking about it.  Does anyone have any input?

Susan

LindaG47

Hi Susan,

I can't help you with Klein and Lee.  MD Anderson has a great reputation though.  Of course I would certainly try to find out a little more about them.  Ask to see some before and after pictures.  Find out what their success and failure rate is and foremost how many they do a year.; i.e., Dr. Massey has a 99% success rate and does over 100 a year.   I know money is important, but I wouldn't let that stand in my way if I wanted the BEST!  Weigh all the pros and cons and then decide.

I see there is a member named paras that had her surgery with Klein and Lee in 2008.  Maybe you can PM her and find out what she thought of them.  Good luck and you can always stop back by this thread and say hi and let us know how your are doing. 

Best wishes, Linda 

LindaG47

Sandy,  Hows the itching doing? 

bennetts1

Linda...no itching in 2 days!  I don't know what was going on, but I am glad it has stopped for now.

 Got an e-mail from Ashley today and my surgery was approved by my insurance!  She just sent papers in this week...that was quick!  I was so impressed! Huge relief since I have a new policy and had to get new approval. 

Susan, I agree with Linda.  Find out all you can about the surgeons...and you DO need to see photos!!  I knew there was a surgeon I could go to 2 hours from where I live, but I knew he had not performed that many DIEP procedures.  He was a new PS to the Memphis, but I just felt I wanted someone who did nothing but breast reconstruction.  My wonderful husband knew how much I wanted this surgery and said if we had to borrow the money to have it, we would go wherever I wanted.  I contacted NOLA first, and it was going to cost more than a new vehicle to go there.  Then I contacted Dr. Allen and Dr. Massey.  After the phone consult with Dr. Massey, I knew I WAS going to Charleston!  My insurance worked wonderful with her...I paid VERY LITTLE out of pocket for medical expenses, just money for travel!  So Susan, you just have to do your research and follow wherever your heart leads you. 

 Best of Luck to YOU!

Sandy

nowords

I don't know anything about those Drs. - but one thing I have gathered from all of the DIEP threads is that some of the Docs do extra Lipo etc. and just sort of work it in there insurance wise, and others do not. If that is important to you, you may want to check that out. I have developed lymphedema and I know Dr. Massey is very vigilant and knowledgeable in that area and that is of great concern to me-as I do not want to end up with a great boob and a much worse arm and side...I think success rate is important and also numbers performed...

SAMayoFL

Thank you all for your input.  I will keep you posted as I continue on the journey.

You know Sandy, that is soooo crazy.  I called Ashley yesterday and talked to her about Dr. Massey.  So many of you have had good results with Dr. Massey that I figured I would give it a whirl.  Ashley said that if NOLA was out of network for me Dr. Massey would be too.  I don't really understand how all of that works.

Susan

LindaG47

Susan,

Call your insurance company and see if Roper in Charleston is in net-work.  Massey ins't in-network with anyone, but ask your insurance and Ashley how to go about getting an in-network acceptance for Dr. M, if you go to Charleston.  NOLA wasn't in-network for me either.  I know Massey prefers to do stage I in NOLA,, but if you HAVE to go to Charleston, she will go where she is needed.  It doesn't hurt to ask.   Linda

AnneW

Susan, is your out-of-network cost significantly higher than IN network cost? Mine wasn't. I used Roper for the big stuff, as the hospital was in network, even though Dr. Massey was not. My insurance will never pay for the cool digs at The Center, but I was still able to use Fairway Surgical Center in New Orleans for my last surgery. Dr. Massey and Dr. Sullivan do surgeries there, too. One of my friends had Dr. D at a hospital in Slidell. There are ways to get the doc you want, even if you can't go to the Center!

bennetts1

Susan,

I got a network exception or a network waiver because there was not a surgeon within 50 miles that did DIEP surgery.  This has to be approved by your insurance company.  The closest surgeon that did DIEP was 2 hours away, so I was able to choose where I wanted to go...and Dr. Massey was willing to work with my insurance and not balance bill (pay what insurance does not pay).

Anonymous

My deconstruction was partially funded as in-network, since Roper Hospital is in my network. However, I have to max out my OON deductible and OON cash out of pocket expenses. That money is what will pay Dr. Massey, since she is OON. She also told me she wouldn't balance bill. I have a hefty out of pocket limit, so this surgery and cost of travel is a financial burden to us. I consider it an investment in my long-term health and well-being. The lymphedema element just wasn't available locally, nor was any other surgeon going to repair muscle after removing implants. Dr. Massey rocks! I've been treated so well here - almost have to pinch myself!

Anonymous

The facility in NOLA is owned by the plastic surgeons themselves, right? It's my understanding that the docs there demand their payment up front vs. Charleston, where Dr. Massey bills post surgery. Roper/St. Francis isn't owned by docs, rather it's a private, not-for-profit hospital.

Fearless_One

Susan, I am in Fla, too - let me know if you decide to go with Klein and Lee.   Do you know if they do SGAP?    The breast recon site says they do, but on the MD Anderson site, it only mentions DIEP on their page. 

Del11

Having had SGAP, with a partial failure, I would recommend only pursuing that surgery with the docs who do it the most. That would be NOLA (Dr. Massey is there as well). I say that with the utmost respect for the delicate nature of the surgery and the doctors who do it, and no regrets about my choice. It's just a really complex surgery, the blood vessels tend to be shorter and smaller, and the risk of failure is higher than DIEP. A lot of practices list SGAP as something they do, but you can be sure they don't do many of them in a year, because they're so difficult.

Del11

For those of you who were lopsided at one time or another... I need to augment my bad & shrinking side with some kind of pad in my bra to even things out for a few months, before my next stage 1. It's about a cup size smaller than the right side now. I'm somewhere between D and DD now (on my good side). Any recommendations? 

bennetts1

Brenda,

You can get breast enhancers at a store that sells mastectomy products.  They are mainly worn if you have have a lumpectomy and your breast is not the same size as your othe breast.  You might want to google to get an idea what I am tlking about.  The place where I used to buy my products at had them and a lot of women who had rconstrction would still need the enhancers because their breast were not the same size.

Fearless_One

What are some things that might cause flap failure?   Other than inexperience of doctor?

Del11

fearless:  Check out Dr. Massey's site at drmarga.com, she has a good explanation of what can cause failure.

Sandy: I can't believe I didn't think of mastectomy/lumpectomy forms, thanks for reminding me. I was checking out regular "push up" pads but I knew they'd be too small. Thick enough but not wide enough.  Too bad I can't justify buying Amoena just for 4 months, the "bottom half" one is the shape I need.  I got this instead, I think it'll work: http://www.makemeheal.com/mmh/product.do?id=12490

bennetts1

Tina and Kim...how are you both doing?  Haven't heard from you in a while!

Brenda, glad I could help you out!  That was exactly what I had in mind!!!  Hopefully it will be perfect for what you need.

Countdown has begun for me...8 weeks!!!!  I know it sounds like a long time, but time will fly by.  I have lost 25 pounds and I would really like to get 5-10 more off by then (Mike said I could only lose 5 pounds more!). This means new clothing because I will be less than pre-chemo weight!!!!  Mike did remind me about swelling from lipo, and I know that will last a while, but it will be worth it!  Wish some more Charleston girls were going to be there when I am going to be there.  It has been so much fun meeting some wonderful bco friends in Charleston. What ever happened to our summer reunion?????  That might be a great weekend for one...we all could rent a large condo!!!  We do need to think about this...so much fun!!!  I know Marga will be in Germany the second half of June, but I do not know for how long and then back in Charleston in July.  I would be glad to ask Marga a convenient time for her if enough people are interested in a weekend reunion.

Have a great week Mermaids!

AnneW

A reunion sounds like a blast, but my summer is pretty full, between work, family, and hiking to prepare for our August trip to Peru/Machu Picchu.

Sandy, way to go on the weight loss! You should be so proud! It's all lifestyle change, and will keep up after you've done the revisions--which makes you want to keep that hard-earned body anyway!!