Charleston Bound, part 2

Catie2013

Has anyone had seromas after the SGAP?



Bogie, so sorry to hear about your mom. She sounds like she was a real hoot making light of her implant!



I was able to get into the Hope Lodge and can't speak highly enough about it, or Dr. Kline and Dr Craigie. Although would be great to get my stage 1b ( failed flap) done in this calendar year, hubby used all his vacation time for this year. Not sure I could do it alone or take people away at the holidays. So, I may be going for 1b on Jan. 2nd, and start a whole new year with my deductible met again! Will be glad when this is finished.



Dr Kline has a webinar going on on the 28th of August, go to their site and check it out.



Tanks so much, good to read about others going through the same thing.

PinkHeart

GMA10 ~

Today I am 3 weeks post-op on my SGAP with Dr. Kline and so far so good.  Is there a certain time frame in which seromas usually form?  I still have my hip drains with daily output at 40 cc daily.   Do seromas form if drains come out too early?

Still have a lot of pain in my butt & hips so Oxycodone is my BFF along with sitting on a stack of pillows when riding in a car and still feeling the bumps.  Dr. Kline ordered HBOT-hyperbaric oxygen therapy, which I started 3 days ago and will go everyday for the next month and lay in the chamber for 90 minutes.  I have been taking oxy before I go in the chamber because the bed/cot I lay on for 90 minutes is not too comfy.  I also take a small dose of xanax because even though the tube/chamber is clear it's a little claustrophobic.  I have been able to fall asleep since it is not loud like an MRI.

I'm not sure why I didn't at least get a call from Hope Lodge that they were full.  I called ACS to start getting rides from volunteers next week to HBOT therapy, and the representative said that I was already registered in their system and saw I had requested the Hope Lodge.  I told the rep that I did not end up staying there and he said that normally I should have received a call if they were full.  Everything worked out great in the end staying at a nice and reasonably priced hotel, did stop and have a tour of Hope Lodge and can vouch that it is very nice for future patients interested in it.  Their web site has 360 degree virtual tours, too. 

Wish you the best on your next flap surgery and all goes well!

   

bdavis

Pink... yes, seromas can form if drains are pulled too early.

cascader

Hi Pink, thanks for keeping us updated on your HBOT therapy. I will start in October if I can find housing in Seattle. I will have the option to actually go twice a day(830a, 130p) for a total of 30 times, which will cut my out-of-town time to two weeks. Sounds like a long time to sit and do nothing, but maybe a good option. I am 11weeks postop sgap today. My breast has softened quite a bit except for a small area above the sternum. It is sore there also so I am guessing that is where they took out rib cartilage?? The redness below the breast where most of my radiation damage seems to be has lessened also, all good things.  Yesterday I wore a bra all day for the first time(the Ahhhh bra) and it didnt hurt. That is a big milestone for me as I have not been able to tolerate anything but loose clothing until now. Being able to wear a bra will greatly increase my wardrobe possibilities because it evens me out. I have been out hiking a bit with my dog but need to get back into the gym, or some routine.  I would like to loose these 10lbs that I crept up on me since last October. I think I have been in a little bit of a funk since surgery, not really wanting to get out there and do much, just hanging close to home. I know excercise will help both with the mental and physical part, but....just do it comes to mind. Got to get the active part of me going again!!!

My daughter is leaving in 2weeks for the Peace Corp for 27months, and her twin sister arrives home this weekend after spending the summer interning in Geneva. Lots going on.  

PinkHeart

Cascader ~

Glad to hear you are healing well.  Hiking with your dog?  I can only wish, but have to remember I'm 3 weeks out vs 11.

I am in a funk about this HBOT therapy and it's only day four.  Today, the 90 minutes in the tube felt like 90 hours.  Part of it is because I'm still in pain, still have drains, still taking oxy, can't lift arms more than 45 degrees, and most of all -- I can't drive.  So getting rides 45 minutes away every day puts a damper on an otherwise great therapy that will do good things for us.  I think also having to go to LE therapy 3 times a week in addition to HBOT is making it feel like too much.  Still ... hanging in there and hoping that maybe in another week I'll be driving.  How many weeks were you off from driving?  I don't blame you for wanting to double up HBOT to go just 2 weeks vs. 4 weeks.  I was told today it's possible I may end up with 6 weeks vs. the 4 weeks . . . so I think that added to the funkiness feeling.   

My son leaves for freshman year at college tomorrow so I'm really busy, too -- only SLOW MOTION busy.    I woke up this morning with a pain scale of 10 and I think I know why -- an overdoing it mom.

That's great your girls will get to see each other for a bit before another leaving. 

cascader

I was driving at 6 weeks. Certainly could have sooner but was just being a baby ( and remember, I stayed in CHS for 4 weeks). You are dealing with alot right now , and so soon out of surgery. Can you dbl up on your HBOT , or maybe go just three times per week? Do you have a friend that lives closer to the hospital that you might stay with one or two days a week? I am sorry that you have to deal with logistics on top of everything else. Remember, 6 weeks will seem like a blip when looking back . Hang in there.

PinkHeart

Cascader~

Thanks for cheering up.  Your thoughts picked me up as well as a phone call.  I had heard that a former doctor of mine and that I know through community involvement, just retired a few months ago.  Along with other community service, his mission trips to give medical care in other countries, he also just started volunteering to drive for the ACS Road to Recovery program!

He just called earlier and told me he is assigned to drive me two days next week and was surprised too when ACS called him with my name and info.  So small world  . . .  he's very positive and easy to talk to and one of those docs that really shows he cares for each patient and all his patients are crazy about him too.  I heard he drives a Bentley to take cancer patients to appointments - so maybe I won't need my stack of pillows to ease the pain from road bumps. 

I also got another good call this afternoon from lymphedema sales rep that my insurance approved the LE pump for my arm!  He is coming to my house with it early next week.  So that will also cut down on visits to my PT-CLT.  However, I will start ROM sessions with her at 6 weeks post-op but only 2 times per week.

When I see the HBOT doc next week and if she thinks I may need go longer for therapy, I am definitely going to ask about 2 times per day.  I appreciate learning about that from you!   I'm also a little hyped up about trying to find a job now or waiting until after Stage 2 surgery, etc. etc.  I have a possible opportunity starting the last week of September . . .   

All ~ Are you signed up for the webinar with Drs. Kline and Craigie?  August 28?  I did and hope I don't forget it!

Is there an SGAP thread?  I found a DIEP 2012, which is also helpful, but hoping to find SGAP.

cascader

So how do you feel after HBOT? Any different at all ? and how do they determine if you have to go for longer ? How do they know it is actually beneficial? by looks? so many questions.....During my consult it was explained that protocol for radiatied patients was a minimum of 20 times to receive benefit and 30 times was standard. Any more than that did not seem to make a difference.  If it is going to help me have a more successful stage 2 then I feel like I should do this. Let me know what you find out.

A Bentley to your appts, nice!

Dont think there is a SGAP thread...but good idea.

PinkHeart

I really don't feel any different yet from HBOT.

However, the day after surgery I felt relief like a load had been taken off my chest (sorry for pun but true).  Just having all that scar tissue removed, pec muscles fixed, twisting up Allerderm adhered to my chest wall removed, radiated paper thin skin replaced, etc, was a good start.

So all those questions you just asked are also on my notepad to ask at my appointment next week for sure.

Forgot to say . . . the PT-CLT trained sales rep who fitted me and ordered my LE sleeves last year and who is now bringing my LE pump next week?  He is from Charleston and was excited to hear I had surgery there and wants to learn more about it.  He said he will fill me in on all things Charleston, too. 

   

Catie2013

YES, if the drains come out to early a Seroma can form. Mine malfunctioned and I had them in for a long time at that ointment, so Dr said we could remove them, but true to form for me three weeks later I had two. So, the drains are your friend. I learned the hard way.



I have an insurance request in for HBOT because I have a radiated skin that is healing but could use the extra push in oxygen. However, I am claustrophobic - so somewhat hoping I don't actually have to do it. What about your ears popping?



Hope lodge was exactly what I needed, sorry you didn't get in. Good thing you got to view it. Are you able to use it on the next trip?



I didn't know the ACS had drivers, that is fantastic. Do they charge?



Hope you are doing well. I think I stayed on the oxy for at least 6 weeks, ( remember I had complications x 3) , then I asked for something less and got Percoset and stayed on that for another 6 weeks, taking it just he. I needed it. Finally just a Tylenol, I profit or aspirin worked for me. I never saw what people who get hooked on the heavy meds got. Did nothing except take the edge off the pain or took the pain away but no high.



The 90 minute nap sounds like a really good idea, I found laying flat a lot helped me. I also have some kind of inflated seat that I put a pillow slip over and used that in the early weeks to sit on, both in the car and on hard seats. I got it at the hospital on my second visit.



Hugs



Catie

Catie2013

Pinkheart, I agree with Cascader, so good you are giving us the first hand HBOT info. When the wound doc where I live saw me after I got home approx 2 months out from surgery, he said I would benefit from HBOT while he was removing a scab from my radiation wound on my radiated side breast after the SGAP. I just thought he was trying to drum up business and not really needing it. And all the fears popped into my head. I must have not listened correctly because I heard 20 weeks, not 20 sessions! 5 months! Later I found out I was wrong. Whew. But still getting there seemed crazy. I am only 15 minutes from the place. You are 45 and you make it work. Makes me feel like a big baby.



And, when my son went off to college, that in itself was a bummer, so that on top of all you are going through no wonder you were in a funkie mood.



I am 4 months out from my surgery. I still have good days and bad days and some in between. Still have a zillion questions and most of them are dumb, but good to hear and see what others are experiencing that have gone through the SGAP. Would be nice for a SGAP thread. Also, yes I am signed up for the webinar on the 28th.



Chris at Dr Klines said I needed to wait until the drains were out. When I first starts driving I noticed I stretched my arms so much that it hurt at night.

cascader

gma10,

Just fyi, not all the HBOT are single chambers. The place I will be going looks like a big submarine, looks like something out of a James Bond movie. It has 3 separate chambers for emergencies, but the largest chamber holds 14 people plus a tech inside. You put on scrubs,sit in recliner chairs with a oxygen hood on. There are strict rules about what you can bring in,no ipods, kindles etc but books,magazines, knitting etc is fine.  Not sure if there might be a place similiar near you, but you might want to check at some of the bigger hospitals. I hear HBOT does miraculous things for wound healing. I too am a little skeptical, but if it will help with a successful Stage 2 outcome then I think I should go for it. I also learned that radiation damage is a gift that keeps on giving, the damage to the tissue can continue and it actually changes your DNA! There are so few downsides to HBOT, mainly the time committment. Oh, and there are no dumb questions! We are all in this together.  

Catie2013

That is a fantastic idea, and I will check into the bigger room HBOT. Right now my wounds are healing so far as none are open! Woo hoo! Today is the 4 month mark. I thought it would take me longer to want to get the replacement for the failed flap (the left side which wasn't the radiate side) , but nope, I'm eager to get I done!



I am hoping for the winter and earlier the better. And you are right anything that will help the next step go smoothly is what I aim to do.



Thanks much! Okay, dumb question: bras, which, when, and how long?



For people through this already: the part of my new breast that has the football looking flap, what happens to that with stage 2? I was told it goes away, but most of the new mound is this football and I had a wound that just healed about the size of a half dollar on the rim of it. Does that make my now c cup a aaaa? Again this is on a very purple ish looking flap that had previous radiation.



Hugs to all



Catie

PinkHeart

GMA ~

Good to hear from you again and that you are gearing up for Stage 2.  You have been through a lot of pain and past surgeries, too, and hope we all can get on a straighter road to to recovery this time.   So thankful for having Dr.K and his staff's expertise and compassionate care to get me through this difficult surgery. 

ACS Road to Recovery . . . they do not charge at all for rides.  I'm not sure if the volunteers submit mileage to ACS for reimbursement though.  I received confirmation calls from my drivers today so I'm all set for rides every day next week.

Charleston Hope Lodge . . . I won't need it for Stage 2 because I am staying with my friend in Charleston/Summerville the entire time and flying both ways.  For Stage 1, I flew down a week early to stay with my friend for fun before surgery, then DH drove down, and when I got out of hospital we went to hotel until post-op, then he drove me home.  For Stage 2, I am again going a week early for fun with my friend, but this time don't think I'll be swimming in the ocean in December!  Just walking the beach still works wonders for me.  I am going to do more of the sight-seeing things this time versus living in my swim suit and island hopping.

HBOT . . .   Your ears will pop at the beginning and end of each session when the technician is pressurizing the chamber.  I just yawn a lot like I do on an airplane.  Afterward, a doctor always comes to check your ears, listen to your heart and lungs.  The technician takes your BP before and after, too.  My technician is very caring, answered my initial questions on phone with a friendly, positive attitude, and has been there many years.  Having med staff like her helps a lot since you will get to know each other well after soooo many sessions and it's not the most fun thing to have to spend so much of your time doing HBOT --so her friendliness helps.  I like to bring a thank you gift of appreciation for her like I do for my PT-CLT therapists that have spent many hours over the past year taking care of me.  All three doctors in the HBOT/wound care department are also great.  One is super talkative and really into research and studies.  Got a question?  Let me know and I'll ask him!

Pain Meds . . .  For past surgeries in my life, I would turn down pain meds or just take them for a day or two.  Since my Dx of BC last summer and all my surgery, radiation, axillary cording, and LE hell, I've been on oxycodone for most of the past year.  I've had five BC related surgeries with one more to go.  Hoping and praying no more!  My local PCP keeps tabs on me regarding pain management and Rx.  

We took our son to college today.  I didn't lift or carry anything, but I'm disappointed in how much PAIN (in butt & hips) I am in from walking from car to his dorm building which is on a steep hill with many steps up to entrance, then had to take stairs to his room on the 3rd floor!  Once he got settled and took my husband on the walking campus tour, I walked alone next door to the Union building to get a surprise gift from bookstore and then put myself through more torture going up all those stairs again to leave the gift on son's bed.  But well worth it!  I am thanking God for oxycodone right now.

Take care and let us know your progress and when you get a date for next surgery.

   

LindaG47

Sandy, sorry I have been AOL.  I have a date, but I have been waiting to hear back from the office about finding another date that will work better for me, but haven't heard back and it has been awhile. I just sent another email yesterday. I may have to cancel if it doesn't work out.  I hope we can talk soon about Colin and Adam.  

Everyone, I have a lot of reading to do to catch up  Hope all is well.

Catie2013

Pinkheart, so happy you have your son all tucked away. I was a baby when my first went off to college, but soon experienced him coming home every weekend ( not so much to see me, but because he had laundry and a girlfriend) .



Can you ask the wound care HBOT doc about what HBOT does when a person goes in with seromas?



Thanks so much



Catie

LindaG47

I don't know anything about HOBT.  Can someone explain it to me.  Is it for wound therapy?  Thanks

MsSherryInFL

Hope everyone is doing good.  Been reading along.  The HBC sounds like it is a great solution for wound problems.  So far my scars are looking great.  She did some extra glue and tape to try to improve them since they were so dark.  Finally coaxed SOME of the tape off and the look fabulous.  Does not look like the fat graft to my upper chest stuck but that I guess is pretty normal.  Still have 1 groin drain putting out quite a bit.  WOuld be great to get rid of that but not pulling it too soon.  Going to talk to Dr M today I hope.  

Anyone else going to Charleston after Christmas? 

Catie2013

I should be going after Christmas, tentative January 2nd, but not sire yet. The drain is your friend, seromas are a pain in the butt ( literally).



HBOT was suggested for me when I went to a local Wound care specialist for the dark scab to be removed instead of traveling back to Charleston (6 hour drive) . They thought since I have a flap on radiated skin and an open wound that I would need it for the flap to survive and the wound to heal. At this point, 2 months later, the wound is 99% healed but still in that very pink ne growth of skin. I don't know if it would bolster the skin up for the next stage or not. But that's all I know about it. So glad Pinkheart is sharing what goes on with it.



When are you scheduled?



Hugs



Catie

PinkHeart

Hi Sherry. Linda & All ~

HBOT is used for several types of wound healing:  breast cancer patients with infections and open wounds, diabetics with ulcers, burn patients, flap surgeries, etc.  In my case, I am fortunate to not have any open wounds or complications from the flaps.  Just sent PowerPoint of my pictures to Dr. K and he and I are pleased so far.  Of course, still lots of usual work to do at Stage 2.

I am having HBOT because of underlying radiation damage in my chest wall and skin, and to improve/boost the health and healing of my flaps.  The surgeons spent several hours prior to start of flap surgery repairing previous recon surgery damage to pec muscles, removing chunks of scar tissue and chunks of AlloDerm used with the implants that fell apart and adhered to my chest wall prior to radiation and then radiation cooked further.  Path report also states scar tissue with staples removed, and dense fibroconnective tissue with localized foreign body reaction.  They also had to rebuild my axilla using part of my donor flap.  I had severe, refractory axillary cording and axilla damage from the ALND-axillary lymph node dissection during my difficult 7 hour long mastectomy last summer.

So hopes are up for help from HBOT to improve healing in my chest wall, radiated skin, and flaps to be prepared for optimal healing for Stage 2 and possible lymph node transfer surgery.

HBOT is beneficial according to literature, but takes a LOT of time and patience.  It really isn't painful in most cases; however, I am starting immediately after surgery so still have drains (which they have me empty before I go in), and my butt is still painful so definitely no fun laying on that bed/cot in chamber for 90 minutes.  (Oxy helps!)  I will definitely be celebrating the last session!!  Not to mention getting these hip drains out!

Take care everyone! 

cascader

Pink, I hope you get those drains out soon. I had my hip drain for 4 weeks. i drove to Seattle and back yesterday(8 hrs of driving) and my bottom hurts, specifically the bunny tail where it kind of sticks out. Will be happy to get rid of that!

LindaG47, I too will be going for HBOT for delayed radiation tissue injury, it is something that tends to get worse with each additional trauma(surgery) and can inhibit healing. I will be doing it proactively in a sense, to optimize my Stage 2 results. 

PinkHeart

Cascader ~

What is this "bunny tail" that you and a few others on NOLA thread have?  Is it specific to SGAP surgery?  Know where I can find pictures of it? 

Feeling around right now - LOL - but don't think I have this.  Hope it's not something I could develop later . . . 

I have been having on and off swelling in my otherwise skinny ankles.  My right ankle is more constant.  Anyone else have this?  Wednesday will be 4 weeks post-op for me.

cascader

Pink, haha...you would know if you had one. Yes it is specific to SGAP, it is where the incision on the butt is, the crack end...wow, that sounds weird to say. Anyway, it kind of puckers and sticks out. Not sure you will find pics, if you don't have it now you won't. What do they call the pucker on the other end by the hip?? A dog ear? I have that too, however minor. I think any kind of exercise, especially walking, would help with the swelling. Another question...do you know who your anesthesioligist(sp???) was? I thought the hospital used Apollo  and they are part of my network and would have been covered 100%, but I just got a bill (out of network) from SC
Anesthesia. Not happy about that , will call tomorrow to find out more.  I imagine the hospital uses more than one group, guess I should have specified.

Catie2013

Pinkheart, Cascadervwas right if you don't have one, you won't get one. The bunny tail is specific to the SGAP as far as I know. Even some of the nurses started asking about mine while was in the hospital. The friend who told me about thendoctorsmto begn with had her surgery last January. She has gone through stage 2 already and the dog ears and bunny tail are all gone in that procedure. I sometimes call,my bunny tail my boob in waiting.



My ankles and feet were swollen unbelievable for the longest tome while I was in Charleston, I came home at 6 plus weeks and the started to go down and were normal within a week if coming home. It didn't hurt so they weren't concerned. I think it was IV fluids, remember I had 3 admissions and 4 surgeries besides my initial 14 hour mastectomies and reconstruction, so I believe it was the IV fluid they pumped into me. Now they are fine, no problem.



Thanks for the info on HBOT I'm still in the process of having insurance say ok. I've met my deductible for sure - don't know what the hold up is. Then I decide if it will be ok in the tubed or me. I'm going to see if there is a HBOT room but not sure close enough.



Hugs to all

Cathie

slh_tn

Just checking in with all the Charleston ladies to say I'm glad you all are doing well!   I'm learning so much about what to expect for my SGAP surgery in December.  Thanks for continuing to share your experiences.  

PinkHeart

slh_tn ~

You're so welcome.  If you're anything like me, so wished I'd found this thread after my Dx over a year ago!

Warm wishes for the very best outcome for your upcoming SGAP surgery! 

Adey

******Alert*************

Isaac screwed my NOLA surgery and I am rescheduled for this Friday in Charleston.  Any advice appreciated.  We just drove 14 hours from NOLA yesterday and now have to drive 14 to Charleston tomorrow!  And plan it all today, blah!  Hotels?  How is Roper?  Airport transfers, cab or do most hotels have shuttles?  Is there a cheap/decent hotel and restaurants walking distance from the hospital?  How far is the beach?  Ahhhhhh..........

cascader

Adey...so sorry about that mess...but am happy that you are safe and can continue with surgery. There is a Hope Lodge in Charleston, might want to see if it is available. I dont know about Roper, I was at East Cooper. I am thinking Folly Beach is probably closest to that area (10 min?) . I loved Isle of Palms beaches, across the bridge to Mt Pleasant but not too far, maybe 20 minutes?

Hopefully someone will chime in quickly with hotels in that area for you.

 Here is the number for Hope Lodge:

Telephone: 843-958-0930

Downey30

Adey,  Well it looks like you are going to see Charleston if you want to or not!  Wishing you safe travels and a very pleasent experience.  I know one thing for sure.......you won't want to do another car trip any time soon.  Hugs, J

Catie2013

Hope lodge is definetly cheap as in no money. Walking distance to some hospitals, not sure which. Meals are comped Monday through Thursday as they are made or brought in from different organizations. Loved Charleston. Many hotels give a discount for patients. Food was never a problem. Hope all goes well.



Catie