continued Tissue expander pain!!

kes

Sherry,

Congrats on having your swap done. Hope all goes well. Let us know how things progress. You must be glad that it is done.

Kerry

conmom

My mastectomy was in Jan 07 but I just started the reconstruction in Feb 08.   My expansion is completed and surgery is scheduled for 5/29 and it can't be too soon.  With the expander in it is sooo much bigger than my real side, sits so much higher...very disfiguring.  I have been working thru all this but it is so difficult to sleep and so difficult to find clothes that keep eyes away from my chest.  My problem is that since the last expansion, which was 3 weeks ago, the pain has become excrutiating.  My ps staff tells me it is muscular but it feels more like stabbing hot pokers being pushed at me.  I can't see anything poking out but have almost continual burning, poking feeling.  Anybody else experience this??  

AnneW

Burning, stabbing pain makes me think of nerve pain, but I'm not sure why you'd be experiencing it at this point.

I hated hated hated my expanders and the size. I'm way happier with the implants, and they look better, too. Hang in there. May 29 is around the corner. It will be here quicker than you know.

Anne

too_young_momof2

So glad to hear I am not just a wimp! I had expander done Feb of 07 and then radiation. But the rad side failed x3. We have put the expander back in after a 6 month rest. I just had my last fill on Tuesday for a total of 600cc, I was in pain just after and by Saturday I was doing alot better, but last night out of no where I was in crazy pain I couldn't sleep can't roll over nothing. I thought it would go away after I got up but it is so bad it has brought me to tears I called the plastic surgeon and he said to take a advil and a tylenol. It hurts to breath, laugh and to top it off I have a caugh which does not help!

Is there any other ideas to decrease the pain?

Thanks

Michelle

kes

Michelle,

Can you ask your PS for something stronger for pain. Taking an advil and a tylenol might not be enough. You could try percocet for the pain or a muscle relaxant. Or you could need both of them. If that fails ask if he can take some saline out. You may get relief if he takes out a small amount like 25cc. See what he says. Good Luck, it can be very painful.

Kerry

kt56

After bilateral mast. with expanders Jan 08, I'm filled to 750 cc and see PS next week, hopefully to schedule exchange. Mixed feelings - dread another surgery and recovery but so looking forward to having these expanders removed. I was filled to 100 cc at surgery and had 60 cc fills. It was rough, I felt like giving up in the beginning but this message board helped keep me going. The first few fills were difficult and then got easier. I took a pain pill prior to fills, had a friend or husband drive me and chilled on percocet, or oxycodone the day of and day after fills before returning to my "new normal". I started out doing weekly fills but towards the end found that every week and a half worked better and gave my muscles time to recover. Just when I thought I was cruising along I found that as I got closer to my PS's  750 cc goal it seemed as my muscles had reached their limit of stretching and I had to reduce the last fills to 40 and 30. It does get easier. I can actually sleep on my stomach now which the PS's nurse suggested to help loosen the muscle on my previously radiated side. I also had to have Physical Therapy to help regain some loss of range of motion in that arm and the massage and stretches the PT did on that side were so helpful. Thanks to all of you ahead of me for the tips and advice and for those behind me, hang in there and it will get better.

KT

conmom

Don't think of yourself as a wimp...ever!   I also have been on the verge of tears, involuntarily screaming out when I went to turn over or get out of a chair (scared my husband!).  I don't really have an answer but have found out that when a get a stab of pain or a continual pain it helps to lift my arm up over my head.  Can't imagine why this helps but you might try it.  Good luck!

too_young_momof2

Thank you so much! I mentioned my pain to oncologist today and put me through a whole bunch of x rays and say it kinda looks like a hemothorax, mabey he said when they filled the expander they peirced the lung the tiniest bit and have some blood on the plural linning. I see the plastic surgeon on Wed just going to try and get through it!

Again Thank you

Michelle

kes

Michelle,

Sorry to hear about the hemothorax. That is a drag. Sounds like you have been living with a lot of pain. Glad that the Dr. listened to you and did x-rays. Let us know what happens.

Kerry

oldgram1

On May 13th I had my right tissue expander put back in.   I had to have it removed in Dec. due to infection.     I was sooooo dreading having this done because I was in such excruciating pain for 3 straight weeks when I had the bilateral mastectomy with immediate reconstruction.    This time the Dr. put in about 8 ounces of saline in the expander when he did the surgery.    I had minimal pain and only took a few of the pain pills.    It was such a relief not to have the pain I had before.    I'm a little worried about the fills which start in 2 weeks but hopefully things will be okay.     Gail

kes

Gail,

Glad to hear that this time was better for you. Just go slow and steady with the fills. Hope it goes well for you with the tissue expansion.

Kerry

JanCM

Well, I have just finished reading all 1122 comments on this thread and I cannot thank you ladies enough.  I would not have made it this far without realizing there are others out there going through the same thing as me.  My bilateral mastectomy was 4/7 with reconstruction and I was filled to 240 cc's at the time.  I kept my drains for 3 weeks (thank you to everyone that shared your experience in getting them removed!)  and I have had two fills of 60 cc's in the last 2 weeks.  (again thank you to all that shared their experiences with the fills!)  I don't think I would have made it as easily as I did without all of you.

A special thanks to Katie for starting this thread.  Where are you?  I miss seeing some of the earlier ladies:  Sheila, Margaret, Sharon, Anne, Jean, Jani, Michelle and her mom, HannaB, Kerry, (glad you're still here) and RubyTuesday.  And what happened to Teribear?  Does anyone remember who got the silicone implants when she was supposed to get saline?  I wonder if everything worked out ok.  I am sure I left out plenty of names but please know that I am so impressed with each one of you.  You all seem to have such wonderful strength and it is passed on to the readers.  I know for a fact that I have been more mentally at ease these last 6 weeks because of what I have learned from you.

I have been tempted to print out this whole "story" and place it at my PS' office for those who have no idea what they are up against.  Sure I watched the video and yes, my PS discussed the details of what was involved but do you really absorb any of that info when you are facing chemo and possibly radiation?  I know I didn't. 

Here's to crying in the shower, turtle shell chests, pain medication, and lots of vitamin E lotion.  Hats off (or should I say "bras" off?) to each one of you!  Thank you for making my journey more bearable!

-Janelle

kes

Hi Janelle,

Thank you sooo much for your lovely post. I am still around. Now my exchange surgery is booked for June 6/08. Actually my expanders are easy to live with now. They did fall and droop down and I went back to work 2 weeks ago. It was good to get back to work as I was able to regain a little part of my life again. Crying in the shower is absolutely THE best place to do it and it is very cleansing at the same time. It was a long HARD winter, but I found strength from this group of women on this thread also. No one else would understand why we obsess about cup sizes and how many CC's are in each side.HA,HA,HA!!! I think that all PS's should have a copy of THIS story and read it and give it to their patients. I sure did not think that it would be SOOO hard to have tissue expanders and I thought many times about going back in and having them taken out. I thought maybe I should have gone for the DIEP surgery, but I made it through. And you will to. Eventhough you feel like you are in expando H*LL at the time just remember that it does get easier and your chest will loosen up. My husband told me that I was obsessed with boobs and I told him that was because I did not have any. What a journey!!!

Take Care and let us know how you are doing. When do you get your exchange done or do you know yet?Jean was the lady that got the silicone implants instead of the saline ones. She started a new thread but I can't remember the name of it. She did change PS's I think.

Kerry

JanCM

Kerry,

I get my 60 cc fills each Tuesday (so far) and after the next two I will be at 480.  I think I will go to 500.  My PS does not overfill nor does he require me to wait a period of time between the last fill and the exchange.  So my surgery should be at the end of June. I hope.  I am tired of this.

You only have about a week?  Wow!  I am excited for you.  Please keep me updated as to how it goes.  I keep saying to myself:  "immediate relief!" 

-Janelle

kes

Janelle,

Wow, no waiting period for you after the final fill and exchange. That is great. I sure wish that my PS did things that way. I found that a lot of PS's did things differently. The end results were the same, no problems. I will be glad to get the expanders out. I get my hemoglobulin checked this week and if all is well then I am a go for June 6/08. If not then it will be postponed again. Keep your fingers crossed for me. I am back to work so chest is feeling tighter. But it feels good to get out of the house. I will let you know how things go.

Kerry

sneakypie

Bilateral mast 4 weeks ago, with expanders placed. 200cc filling in each right away. Continual pain (sounds pretty normal from what I'm reading), which I'm now "handling" with OTC painkillers. Simple mast mound with horizontal scar looks great and is filling in a regular pattern, but modified-radical mound (maybe due to odd diagonal scar resulting from original lumpectomy, then sentinel node biopsy before tissue removal) not looking good. Big lump forming at the bottom of the expander (and sits low--on my rib cage--ouch) and flat in the mound center, like incision area is resisting fill. First "refill" (ps wanted 100cc but compromised on 75cc) at 4 weeks made bottom lump bigger, though a little more fluid is also going toward the center. ps suggests massaging under and at the bottom of the lump, though warns that some skin sometimes just resists and he may have to replace the expander. Under ideal circumstances, he would try for 100cc every week until I reach about 500cc. Any hope for its resolving? Any suggestions?

ehall

Hi there--yup my left expander had similiar issues (SNB side)--but in the opposite direction.  It was very high and tight.  Hated it....and each fill of 100cc was good until the following morning.  I went in weekly up to 800 cc.  Then waited 4 weeks for my exchange 2 1/2 weeks ago--700 high profile silicone implants.  During the expander period--I saw a breast PT--she was great.  Helped with stretching and dr. gave ok to massage to expander--which brought it down and made me very comfortable.  Remember the more ccs the tighter it gets.  I highly recommend a PT who specializes in breasts and mastecomy patients.  Good luck and take care...

jeanb

I just had a double mast., with expanders a month ago. I always feel like I am carrying an elephant on my chest, but can function. My big problem is the weather. I can't sleep and find it unbearable to walk around in the rain or right before the rain when it is humid. I spent yesterday in bed, as it was raining and I was so uncomfortable when not laying down. Has anyone else experienced an increase in pain due to the weather. Also, a shower or bath at least twice a day and moisturizer helps when things feel really tight.

Thanks- Jeanb

jeanb

I just had a double mast., with expanders a month ago. I always feel like I am carrying an elephant on my chest, but can function. My big problem is the weather. I can't sleep and find it unbearable to walk around in the rain or right before the rain when it is humid. I spent yesterday in bed, as it was raining and I was so uncomfortable when not laying down. Has anyone else experienced an increase in pain due to the weather. Also, a shower or bath at least twice a day and moisturizer helps when things feel really tight.

Thanks- Jeanb

texas94

jeanb,

I can understand what you're talking about, because I always felt it was impossible to breathe well with the expanders, which got worse in humidity.  It was just hard to take a deep breath and function.  For sleep, another survivor recommended Melatonin and it helped immensely.  I found a great sublingual one at Whole Foods (I take 5mg per night), and it gave me much more peaceful sleep.

For pain, hot baths or showers, massage around the expanders with shea butter, stretching until it hurts, and valium (which has muscle-relaxant properties) were the things that helped me.

Good luck- there is a light at the end of the expander tunnel!  The exchange surgery is so easy compared to what you've been through, and the implants are SO soft in comparison! 

EHK

HKitty71

Question has anyone had the Alloderm put in with the expanders? I had 200cc put in at surgery but well the area under the incision is quite firm almost hard and you can see the top of the expander at the top (not as noticable as Posh Spice implants but does kind of have that same look). The thing that disturbs me is over to the arm pit area near where they did the SNB it looks dented, is that normal?

The PS seems very happy with his work and I am frankly surprised it is well  not flat.

Any comments are welcome. 

JanCM

HKitty,

I too had the Alloderm put in with expanders (bilateral, April 7th).  I also was filled to 240 cc at the time of surgery.  The area under my incision is extremely hard and with each fill, (I've had 3) the top grows closer and closer to my neck.  I will probably suffocate before reaching my goal.

I did not have any nodes removed so I cannot answer your question about the dented portion being normal however...I do have some areas that are dented and "puckered" for lack of a better word.  My PS says he will fix it at the exchange.  I am continually amazed at what we now consider normal.

Any fills yet?  Mine scare me to death but I am a big baby when it comes to needles.  I am pretty much a baby when it comes to any of it though.

-Janelle

kes

Hi Ladies,

I did not have alloderm or a SNB so I am not much help there. My one expander on the right sat higher than the left one. Now that I have had them in since Jan 25/08 the right one has dropped down and is even with the left one.

My exchange surgery is for this Friday June 6/08 at 4:30pm. Day surgery and I hope that I do not get bumped. If the cases ahead of me are delayed then I will get cancelled. My Hg is 119 so I am a go. I cannot believe that this day is coming. Back in February, I thought that I would NEVER make it and that the pain would NEVER stop. I am anxious and nervous. Afraid of the size, as I am not going big and just want a B cup. Hope that they are not too small and not too large. Just looking forward to something soft in my chest for when I hug my DD. I still have trouble getting my head around all of this. What a journey!!!!And it is not over yet.

Kerry

HKitty71

 Janelle I have only had the initial fill of 200cc's at the time it was installed. I am glad to know I am not the only one that feels like there is a shelf underneath. I feel like I could stack some books on it. 

I am only 10 days out from surgery so it is still really new. Still have both drains, they do not want the same problem I had with the lumpectomy to arise.

Kerry, that is really great, I will keep my fingers crossed you do not get bumped. Congratulations.

Amy 

Sharon67

Greeting Ladies from wonderful Michigan!!!!!!!!!!!

Well I finally am back. So sorry for the lack of input, I've been through what I call the "30 days of Hell and Back". Fellow wonderful ladies, never make the mistake of asking "what else?, or "what next" could possibly happen........I'll give you a brief re-cap of my life of the last month of so....

As many of you have read, my dh is a recovering alcholic, I have 3 step children, and I work with special education children. I also have a commercial flower installation company and travel thru the state of Michigan the last week of May to plant 3500 flats of flowers for a major furniture chain.  Keep this info. in mind as you read what happened in just a 10 day period.

It starts with a Friday afternoon, my daughter and I are going down state to prep flower beds. I decided to save on gas and just take my Lincoln Towncar because of the hugh trunk space. I put 2 brand new rototillers and a backpack plower into the trunk. While traveling down a off road highway (4 lanes) I stop for a older women so she can turn into someone's driveway. A man in a pick-up truck (who by the way was jumping lanes to pass everyone in site) backassed us at 65 MPH. I knew it was going to happen, I could see him in the rearview mirror. I told my daughter to hold on, and Boom!!! The trunk is now in the back seat of my car. The $1000 of equipment is now wedged and I can't even get it out of the trunk without a crow bar. The police come, as well as EMS. They want to take us to a local Hospital that I wouldn't even take my worst emeny! My house is 35 miles away. EMS is in a shift change, they just left my little town, where the hospital that my DH works at.  They tell me I have to wait until the next set of EMS guys, and maybe they might take me to my town. The next thing I know my car is up on a flatbed truck and taken away. The state police officer informs me there's another accident up the road. I explain I need a ride back to my little town. He informs me "we just won't leave you on the side of the road". Well guess what, that's exactly what happen, I go into the VFW hall that was infront of the accident, come out, and everyone left. My daughter and I were stuck on the side of the road for 2 hours until we found a ride home. My DH decided to jump off the wagon after 145 days, he and his sons decided to go over his ex-wifes house (who was out of town) and entertain about 50 kids. He didn't get home until 5am. I ended up calling a local friend and he picked us up because the DH was just unavailable...

Saturday.....I couldn't get into my car to get my equipment because I was informed by the backroad hick that owned the towing company, that his son was getting married and no one was around and then Sunday was Mother's Day, so he would meet me at the stock yard on Monday.

Well Monday came. Now I reminded you of my Special Ed class, he's why. Monday our class was on a lock-down and children were not suppose of leave the classroom because EMS was in the building. A 6 year old with down's bolts from the room. I was the closest, so I ran for her, her little legs made it down the hall in record time. The teacher was out of the room, was not happy when she returned, and to make a long story short, had a bi-polar moment with me. She started poking me in my reconstructed chest (without nipples until next Friday). She got written up for her lack of control, I was in the right, she the wrong, and she was suspended without pay for 2 days.

Next day Tuesday....the what next day! Tuesday was Special Olympics, My student did great in the wheelchair events, right up until her ran over my foot with his very heavy wheelchair. Oh well, I fluffed it off as an occupational hazzard of the job. After the events I decided to go to the local Sheriff's dept for a copy of my accident report. The other office in the county that it happen would fax me a copy for $3.50. I say great, do you take Visa? She replies no, only cash. So what she was telling me was I had to drive 35 miles to get the copy? Go figure....So anyways I go to the local office, thinking, it's a small town, most of the officer's know me because of my DH jail days. They tell me sure, they can get a report, come on back to the fax. So I go thru the metal door, for the local officer to inform me "Sharon, do you know there's a bench warrent out for your arrest?" Needless to say I was stunned, If it was my husband, it wouldn't have surprized me one bit, the way my week was going, but ME, I never even had a speeding ticket. I was informed that I missed a court date that I was to attend regarding a condo that my DH and my stepchild purchased without my knowledge 5 years ago. (A whole nother story) Anyways, the association was sueing my husband and obviously myself because my name was on the paperwork for $4000. The court date turned out to be the same date as my exchange surgery back in Febuary. The office manager (who is the ex-wife) was suppose to reschedule the court date. Guess what, she rescheduled with the attorney (theirs not mine) never with the court house, and I was booked! They took my finger prints, mug shots, and put me into a cell for 4 1/2 hours until my attorney, (who had the day off and was on Lake Huron fishing) came to the court house with the check. My husband couldn't get me out because if he came up there, they would have arrested him too! So I sat in a cell, my foot still hurting because of the wheel chair accident. When the officer asked if I had any scars of tatoo's I did enjoy flashing him MY NIPPLELESS CHEST to remind him why I was not at court, I was dealing with breast cancer and knew nothing about a court date. He then stated he was just doing his job, and I tried to stay calm.

Well, Wednesday I still had to go before the local judge, my attorney at hand, totally pissed at my husband for me being booked, (he's a personal friend, more mine than his) and had to take the day off work.

All thru this adventure, I kept thinking...."what would have happened if I was traveling the next week planting flowers. If I had a traffic violation, someone could have thrown me in a Detroit jail, hooker's and all" all because of a bench warrent I knew nothing about.

Well Thursday was the funnest. At 6:15 a.m. my neighbor was on my porch as well as Maverek. My Horse. He had gotten out of the gate and was following her on her morning walk before work. She came to the door to tell me he was out, and so did he.  At this point during the week, I just shook me head.......laughed.......and grabbed an apple.

Ladies, never ask...."What else"

Love and miss you all.....

Sharon

HKitty71

OMG

kes

Sharon,

UNBELIEVABLE is all I can say!!!! What can go wrong will, and horribly wrong for you!!!! I think that I would have lost it when the teacher was poking you in the chest. Just would not have been able to help it. And the DH and one of his sons bought a condo without you knowing? And the horse on the front porch with the neighbour? He must have been out of sorts, the poor horse, at least he had the hindsight to find a friend and follow her around. I think that if it was me I would be moving into the condo by Friday.LOL!!! What a week. Was there a full moon? WOW!!! Take a rest now or a vacation.  My exchange surgery is for this Friday. I hope that they are large enough. Just want a B cup. Let me know how your nipples go. I am day surgery on Friday, so will be home in the evening. Probably drooling and not know my middle name and with the traveling throw up bag. How utterly glamorous!!!! What we do to have BOOBS!!!

Take Care,

Kerry

Sharon67

Kerry,

Friday will be here before you know it!!!!! I do hope and will pray that all goes well with your exchange surgery. As for your size, don't let first impressions of your surgery disappoint you. It is true what all the other ladies have said. You will need time to settle. Although I still to this day wish I was larger. I call my chest a "Baby B" cup. Back in April I begged me PS to make me larger. He explained to me why I am the size I am. There just was not enough space or skin. As the months go by, I do notice more projection because of the muscle finally starting to loosen up.

To all the other wonderful ladies that are still in the expansion process. Just remember - use pain meds if you need them. We have all been through enough pain, mental and physical to have to suffer with the fills.

To the newbies who have just had your surgeries: listen to your Dr's. when it comes to recovery. Don't try to be super woman. We all know we are, but let someone help  you for a while. If the house is not perfect, that's okay for a while; let someone else cook or order out; if the neighbor's or relative bring a dish, thank them and even if you have enough, place that dish in the freezer until later. But most important, remember they just took our chest, life does go on, and the pain will not always be there when you bend over or reach for something. I remember when I was first Dx with BC. I thought my life was just over. After the after shock, I took a real close look at my life, it was then I thought of my students that I work with. They are SMI kids, who will never talk, some never walk, or even be able to eat on their own. They will always be like this. I, on the other hand, was not always going to have breast cancer. It has been 8 months since my bi-lat mast. 7 months and 2 weeks ago, I would have never though the pain would end. It does wonderful ladies, it just takes time......

Take Care

Sharon

JanCM

Sharon,

I am new to this thread prior to your last 2 posts but I followed your story from way back.  Oh my gosh!  You know, you should finish out your reconstruction and head down south to live!  It is calm and is a wonderful place to get away from all of those "what next" problems.  And we even have plenty of need for special ed teachers in my school system!  Let me know!  -Janelle

Sharon67

Janelle,

I am due for a much needed vacation!!!!!! I've never been to AL, how's the weather out by you????? As for relocation, there have been days that I just wanted to pack up the dogs, horses and leave. But then I remember how much I love the kids I work with, and the land I live on. The DH and step kids are so-so. I do have a wonderful 16 year old daughter that keeps in just sane enough, and reminds me of me when I was her age. All tom-boy. She's beautiful and all of her friends are boys, she one of the best dirt biker's in our little town. Life is never boring!!!!!

Keep in touch,

Sharon