continued Tissue expander pain!!

CBJ, I had muscle spasms BEFORE my first fill.  They could be alleviated by doing the PT exercises that they gave me in the hospital.  The two that helped the most were: 1. pushing my shoulder blades together and holding it and 2. clasping my hands in front of me with elbows bent and pushing (like an isometric exercise).  My spasms got sooooooooooooooooo much better with my first fill.  On surviving fills, go slow.  I had approx. 60 cc every TWO weeks and I did fine.  I never took any muscle relaxers or pain meds.  I ALWAYS told my PS when I could feel the fill.  Twice I had 80cc without any problems.  Slow and steady wins the race.  Best wishes!

Hi Ladies,

Welcome to the new ladies,seems like we have a few that have had their surgery at or around the end of Jan/08. Just take it steady and slow. My fills were done by Feb 11/08. Still cannot believe that.My exchange will be done on Apr. 25/08. With the first fill see how you tolerate it. I was fine when my PS was filling it, but by the time I had my coat on and made my next appt. and was downstairs in the hosp. lobby then I would start to feel extreme pressure and tightness. Ask the PS to do a small amount the first time to see how you react to it.

Hanna,

What will your final expansion be before your exchange? Do you know what size implants you will be getting? You are a trooper!

Yes, I think that I will patent the word"foobulous". My licence plate could be "I'mFOOBULOUS".Or how about "GLOFOOB". I could go on and on, but I better not.

Take Care,

Kerry

CBJ,

I don't know how much you have read, but it seems that the first couple fills for most people don't seem to be as bad, then it gets worse.  My doctor said that only 2 of his 10 pts. (one being me) experience pain.  Some of them take 100cc's with no problem.  My first 4 fills were 60cc's each, then I cut back to 40.  I should have cut back starting on my 3rd fill.  My fill of 40cc's this past Friday has been the easiest so far and that's what I will continue to do.  I will get them every 1 1/2 to 2 weeks inbetween. 

You'll just have to see what works for you.  My best advise to you is to take it slow if it hurts.  Don't be in a hurry.

Laura

 Hi Ruby:
I don’t think your experience disconfirms my hypothesis. You had small fills spaced out and it sounds like you have more feeling in your breasts than most. I am looking at more the extremes – the women who get 100 cc per week and have no problem verses the ones who are suffering intensely with 50 cc every 1.5 – 2 wks (like I did). 

Hanna, I expect that having the skin sparing mastectomy results in a bigger expanse of numb skin than having the skin removed as in a regular mastectomy. When the skin plus the breast tissue has been removed the skin that is stretching is originating from an area that still has nerve supply. In my case the nerve supply is gone and the skin is mostly numb – about a 2.5 inch radius around the nipple and all of the bottom aspect. Nipple is totally numb and I doubt that it will ever get any sensation.  The fact that it becomes erect when stimulated or cold is a local response and does not involve transmission of sensory information. As I mentioned though my pecs have a good nerve supply (that is where I am experiencing the enhanced sensation).  This is probably my brain compensating for the lack of information coming in form the skin. I did not feel the first couple injections but certainly by the end it was painful especially on the one side.  Now, there is one woman who might have the opposite to me. She said that her skin hurt to stretch, but the muscle is fine. There are different nerves supplying the intercostal, pecs and the skin – so maybe there is something to this. 

In terms of the mastectomy procedure and skin thinning. It is my understanding that all the breast tissue cells are sucked and scrapped off of the muscle and skin, but the muscle and skin are not disturbed – unless there is reason to believe that cancer cells may be harbored there – in which case they cut suspected muscle or skin out completely. My sister had some muscle removed as well as the breast tissue. The doctor won’t do a skin saving if the cancer is near to the skin. They do turn the nipple inside out and suck as much of the cells out of there as possible. My PS said that it is the recommendation of all doctors to remove the nipple/areola complex – as determined by the American Board. But I said that I can check my nipple/areola easily so anything growing in there can be detected right away, and given that it is a whole long way away from my rib cage, and the likely hood of bc in those few remaining cells is so very low that I feel pretty good about keeping the nipple – cost benefit determination, right? He did agree with me and went ahead with the skin plus nipple and areola saving procedure. I am very happy with it. 

I researched the nerve regeneration issue and there really is so little information out there on how the nerves regenerate, how much capacity there is to regenerate and how to enhance regeneration. I did find some research on methylcobolamine (its is the neurally active vitamin B12). I do take this a couple times each day. Who knows weather it helps. Does not seem to be any adverse effects so I figured why not? Again the cost/benefit determination that only an individual can make for her self.

Have a foobulous day ladies!

Jani 

Hi again!

Here are my stats - 5 ft. 5 1/2 inches tall, was DD's with a 38 band. Droopy DD's!!   Now, I'm expanded to 850cc's and will still keep on taking slow fills up till I'm ready and that should be around June. This is because I was previously radiated and the longer the skin and muscle sit there in the hard expander, supposedly the better the result.  Who knows.  I am truly getting tired of this.  Anyway, I don't know what my final fill will be but my PS is mulling over possibilities.  See, one thing about me is my ribcage doesn't seem to be flat across. It didn't ever look like that before because I had all that filled up with breast tissue and always looked straight across.  My surgeon said this was noticed after the surgery.  I think I was able to take the 500cc's at the time of surgery because my ribcage angled slightly around rather than being a more straight across type of ribcage.  I am making no sense I know. ?

Anyway, this I think is why I am so filled up compared to some.  Me being at 850 might be like the rest of you up to 450 to 600.  When those implants are put in, they'll sit right there on the front of your chest bones.  With me, I think they need bigger ones to fill up the space.  So, my PS is talking about 700cc wide base HP silicones.  I think anything bigger than that has to be specially ordered! Yikes!! 

The thing that has always bugged me is why they make the front of the implant boob look flat across?  Why can't they make a pointier (is that a word?) front?  Oh, I know all about that muscle stuff and the straight across incision.  But since they know that, why do the incisions keep on being those 3 to 4 inch horizontal things?  Ruby!  How'd you get your surgeon to make a dart incision?  Was he a tailor before? 

OK, so after the fact, no sense looking back at our bs's incision decisions.  We have them.  But, what I'm wondering is if it's possible to get some kind of graft thing to poke it out more.  More cone like. Maybe the nipple will help. Well I'm done with boob talk for now. 

OK, well I'm heading out again.  I just love crisp, sunny weather!!

I finally am feeling like I'm poking my head up out of the winter doldrums.   Loving the sun!

Hanna   

Hi Ladies,

Jani and Hanna,

Hanna, you are my hero. Filled up to 500cc at the time of surgery.WOW!

Jani, one more fact to throw in is that I have scoliosis (curvature of the spine) Not bad enough to have surgery, but enough to give me pain in the lower back. A Dr. or Physio can see it if they look at me from behind but a lay person would not be able to tell.

Kerry

Hi Kerry:

You have clearly taken very careful measurments and been over all the ccs that went in. By the way, how much tissue was removed during your mastectomy?  It must have been much less than the fill if you are bursting your bras now. Oh, for the projection I just held my fingers under and straight out from my chest just below my breast, then looking straight down I measure 4 fingers. Then I measured my 4 fingers across with a ruler and it is about 3". Sounds like with that way of measuring you will be about 3 as well.

So, I guess we have to chalk this up as just another mystery of this bizarre expansion process. I remember the frustration coming up to the exchange and trying to figure out how things were going to end up. You can say, "well, people are different", but here are you and I and we are very similar in build and similar cup size -but dramatically different cc's! Go figure!

Thanks for the information Kerry. I am glad that you did not have to expand further.

Hanna, there is simply no possible way that I could have gone up to 800 cc you are so brave! It is a long wait but it is worth it. Just think the longer you carry around those awful expanders the greater will be your joy at getting rid of them!

Take care all,

Jani

OK,

I tried to measure myself and it's maybe off a half inch or so but here is what I got.

I measured about 33&1/2" under the breast on the ribcage... I also measure 38" at the widest point of my 'expander boobs'.

I tried to get the projection holding a card and measuring and it's about 3" out from the chest.

I wore a 34D before mastectomy... and I am hoping to get back to that. I tried to use the calculations to check band size and there is no way a 38 would ever fit me. I got some sport bras in 36 to wear after my surgery because I wanted something loose...

I have gained about 15 pounds since surgery but even with that can still put my 34 band size bras on (but the cups will not fit around the expanders because they had wires and the shape is not the same or in the same place)...

I am currently filled to 670cc and plan to keep going to around 800cc... or so...

I think I have a size 13 expander (I'll ask again next time)...

I am 5'3" and weigh about 155.  I usually weigh 140 and I'm getting back to that slowly. 

I had 717g taken out of the left side (which was swollen from the lumpectomy and always had been my larger side) and 623 taken from my right side (non cancer side)...

I think I am on the right track to have a 34D again--my hope is to get a high profile 750 or 800cc silicone implant... and if it's bigger that's fine with me, I just don't want to be smaller than I was before mastectomy. My breasts fit my curvy stature...

Thanks for all the help measuring and sharing your stats... This is kinda 'fun' in some way because it gives me some hope.

Hi Ladies,

Laura,

Don't get worried about your expansion. After reading about everyone else I think I am the odd man out.

Jani,

I was looking at the width of your implants and it seems like my expanders are narrower than your implants. You measured 10" from edge to edge and my measurements were 7.5" on the right and 8" on the left. I am wondering if I am more narrow chested that the rest of you. Now I am starting to get worried. My PS always tells me to forget about cc's and cup sizes, but that is the only way I can relate to this. She just eyeballs me, and she thought that I would be a B or a small C with a 275cc implant. I will have to call the BS's office and see if I can get a copy of my final path report. When I was expanded to 360cc I was HUGE!! Then I read about all the other expansions and I think maybe I am going to small and will end up with a AA cup size. I should go on the picture board and see how many cc some of the expasions are and compare to my size now. I cannot fit into my B cup bras now. They are way too small for me, I look like I am busting out of them. Very weird!!!!

Ruby,

I tried that bra measuring site and my foobs were too high at that time to measure above the foob. Will have to try again.

Take Care,

K

Kes, I was surprised to hear that you also have scolosis. I was dx with double scolosis as an infant and had surgery at age 11 to put in a herrington rod to support my spine. Has your scolosis given you any problems? I have not done any of the extensive measurements but have found that a 40a cup or 38b fits me fine. It is the same size I was prior to surgery. I had about the same amount (cc) of tissue removed as what was put in my expanders. (530 on the left removed and 650 on the right removed and expanded to 650 both sides). prior to surgery I had an A-cup left and b/c cup right. Now they are both perky B-cups in a 38 band.

Sheila

Hi Ladies,

Jani,

Thankx for the ideas. Printed off the measurement guide. Will go to wally world tomorrow and try on different bras. Tried to call the BS to get a copy of my path report but he is away until Thursday. Am seeing GP tomorrow and will see if he has my path report. Will also make another appt with the PS to talk about sizes again, just to have my mind more at ease. She will think that I am a lunatic. Oh well.

Sheila,

Yes my back has given me problems now for about the last 15 years. Chronic low back pain. I take flexeril 10 mg at bedtime for it. I have tried chiropractor, but physio works better for me, as she manually stretches me out once a week.

Take Care,

K

Well.  I certainly am impressed with you all here.

My goodness, I don't believe such an analyses has ever taken place anywhere. 

Now I'm feeling like I have to wonder what's up with me?

How come I had 700 cc expanders placed filled to 500cc, get 160cc five weeks later, then lower dose fills since then I'm at 850cc's now and you all think I'm some kind of hero cause I have that much in me and but it doesn't bother me because I don't look big at all because I think most of it's all back in my chest somewhere and I can't possibly be done yet cause I don't think I'm any cup size known to woman?  I wonder if any cup at all would fit over me.  This setup is not anything I could wear a bra over.  Not even for test purposes!  I'm thinking more a cereal bowl.  Or a soup bowl.  The kind you get a bowl of vegetable soup in at a diner.  Not a cup, a BOWL.  I'll just have to string together a couple of bowls together and wear that for a bra.  Gosh.

I mean really. I always did hate math.

Ok girls, I am cracking up, because I thought I was the ONLY one crazy enough to do all these calculations to get "just a little bigger and perkier" than before my mastect.  I called my dr's wonderful nurse and made her pull my chart, tell me the grams of tissue that were removed and then convert that to cc's.  We were on the phone forever with our calculators laughing about it. She said she had never had anyone call and request her to do that. Good news is- it really was helpful in figuring out what size would be good! I ended up with just a little larger and of course more nicely shaped than I had before!  Good luck- it will be worth all the "figuring" I'm sure.

And Hanna 850ccs? My Lord, I would have had to have been put into a coma to handle that much pain! I went to 480 and thought I might die if they tried to put in 1 more drop.  You are very funny though- soup bowls- the good news is I just got my expanders out and implants in last week and they are HEAVEN in comparison. They are nothing like the baseballs strapped to my chest expanders I had going on before- what a nice look that was. I promise- your implants will look much nicer and you'll find lots of nice bras

EHK

Hi all.

It is funny how we obsess with the measurements. But I think it is healthy at this point. Gives us some sense of control of this crazy process, and a distraction from the uncomfortableness, as we dream of what will be.

I went to the gym yesterday for the first time since the exchange surgery (Feb 12), (ouch my muscles feel it this morning!) and just wanted to relate another bonus with these implants that I had really not appreciated before. I left in a hurry and forgot to put in my sports bra (the real heavy duty one that kept my heavy, droopy premast breasts from flying all around when I run - I am really not one to put on a show for the boys at the gym!). Anyway, I was disappointed because I was really looking forward to a good run, but only having my regular bra on decided to just walk quickly anyway. Part way through I thought I would just try a little run.  Well, hallelujah! What freedom! These breasts are the same size as my pre, and while they do move up and down they don't flop!!!! No kidding, nooo flopping! I was so excited. I ran for miles - well just 2- but it felt so good. What a bonus for here after!

Another thing. You have all seen the augmented breasts at the beach that appear to be stuck in place. The woman lies down and her breasts stick straight up in the air? Well, these implants don't do that. They actually pancake down just like regular breasts. Pretty cool, huh? On the down side (always is one, huh?) when I bend far over I notice a wrinkle on the left outside edge. But it disappears when I stand up.

I know I will always mourn my premast breasts. I loved them. But there are some really positive things about these substitutes that make it all easier to swallow. 

So hang in there girls - there are good things ahead!

Jani 

hi kerry and hi everyone-

thanks for asking about mom. i read all of your posts to her so she can keep up with everyone. Jani- she cracked up when i told her the sports bra story and hanna when i told her about the soup bowls and the 850 cc's i thought she was going to pass out!

we talked about calling the PS to have them check the pathology report so we can figure out the cc's. mom said at this point she'd be happy with a training bra if she could get these da*n things out of her...

she went to physical therapy yesterday and she got some exercises. two of the exercises have something to do with a cane. the other is a "wall wash" and the last is a "doorway stretch". she'll be going twice a week so we'll see how it goes. the therapist said that she would get her moving and she'll be able to vacuum in a week or two. i told her no way! the ladies say absolutely not! (see how much you've taught me?). i must say that was a little concerning. can it be that we've hit the lousy doctor/therapist trifecta?

went back to the BS yesterday. she again said that she's never heard of anyone having this amount of pain and discomfort. we told her about this web site and we now know of several women who have had a similar experience. she said  websites are only for people who have problems :- {

is it me? 

hanna- i found a PS at u of p hospital that does alloderm w/ immediate implants. i'm going to make an appointment to see if mom is a candidate. the only thing that worries me is the fact that this PS probably knows PS #1 and we know what happened the last time......if you have a chance to send me the # of the doc in maryland i'll give her a call as well.

so, we'll see what tomorrow brings. i may look in the yellow pages for a snake charmer. maybe he can get the boa constrictor off of mom's chest. why not? i've tried just about everything else.

take care everyone. have a good night!

michele