continued Tissue expander pain!!

Hi everyone,  I'm sorry I've been not here.  I've had a lot of family stuff going on, especially with my mother who is elderly.  I like to be upbeat when I visit here and I just haven't been lately.  I'm sorry.

First, I want to say Jani, I think your idea of compiling the notes and messages and records of our various experiences and emotions would be a fantastic idea for a handout book at the breast surgeons and the plastic surgeons.  I know you mentioned the start-up costs and financial upkeep of such an endeavor, but maybe if you put a rough one together - you could approach the ACS or the Komen foundation or Avon for some advice.  I would even think some publishing companies would be interested in supporting such a booklet because as we all know - 1 in 7 or 8 women will be diagnosed with breast cancer in their lifetime so perhaps some publisher would be interested in supporting your idea.

Next, Michelle, I want to second your idea of the immediate implants.  If you live anywhere near New York, there are several doctors there who perform immediate breast reconstruction with Alloderm.  Your mother could have the expanders removed, and the surgeon would place soft implants underneath the lifted portion of her pec muscle and sew a piece of Alloderm onto to the southern edge of her pec muscle and then sew the Alloderm into the inframmary fold pocket.  Your mom would have drains because it is important that the Alloderm stay as dry as possible within the breast to help it take to the skin.  Alloderm is human donated tissue that has been reworked to remove everything but the cellular matrix.  The Alloderm arrives in dehydrated form, is hydrated in the OR, then with the correct side facing the breast skin so as to be fed from the skin's blood supply, will attach to the breast skin.  The backside of the Alloderm will rest on the implant.  This method of immediate breast reconstruction helps very much because it doesn't require the pec muscle to stretch an enormous amount.  In immediate reconstruction, if your mom had a skin-sparing mastectomy, there will be skin left.  Now, the skin left with the Alloderm attached will be lain over the implant and will create a breast - most likely a bit smaller than what she would have attained had she gone through with an expansion process - However, it sounds as though she may have naturally less flexibility in her muscle cell makeup or her ps placed her expander entirely under her pec muscles or pec and serratus muscles and even possibly hitting at some nerves.  For the pain to be so severe to radiate around to her back and ribs and only be getting worse, I'd be concerned like you are.  For some women here, they found some relief when they had their first fills - frightened as they were - the fill actually helped.  Did this happen yet for your mother?  If it has but she is still in debilitating pain, then if it were my mom, I'd go to one of 4 surgeons I know do the immediate reconstruction with Alloderm and have soft silicone implants placed immediately.  I would help my mom understand that smaller would be better - at least until her body has become accustomed to them as well as her eyes becoming accustomed to them.  If she ever wanted to go bigger, at least the space would be kept sized out.

I will PM you a link to a surgery involving immediate implants with Alloderm and the surgery performed by 4 prominent surgeons.  Now, if you can't get one of these actual surgeons, get them to refer you to someone who has been in a fellowship with the training surgeon or works in practice with them.  All four are affiliated with prominent hospitals.  The link is forthcoming. 

You are a wonderful daughter.  Both of you take care,

I'm PMing the link to you now so check your "my home" site in a few minutes.

Hanna

Michelle,

I CANNOT BELIEVE THAT. Your poor mother.Do any of the hospitals near you have a Pain Team? That might be an option. Or can your GP help you out. Pain is Pain, and what she feels is real. That just sends me around the bend when health care professionals leave someone in excruciating pain. My PS said that I could apply heat to the area. I personally am afraid of a burn because the tissue is less sensitive after the surgery, but what I found helpful was those little hand warming packs that guys put in there mits in the winter, and I would move it around very frequently. Physio helped me greatly as my physio manually stretched out my pec muscles.Some people find relief with warm baths or showers. I preferred the warm showers over the baths because in the shower you can cry easier and just let the water wash away the tears and my DH never knew. Felt better after that for sure.Some women use warm wet wash cloths or towels and just lay them over the breast area. This did not appeal to me. Other women will massage with lotion all around the outside edge of the tissue expander. I find this helpful and my PS said that I could do this.Also I got a script for Ativan from my GP, just to help with anxiety,because I felt that I could not breath and I was being crushed, but after the 25cc was taken off I have not had to use it .

Hope that helps and Hang in There!!

Kerry

Hey, me too!  I've got a nice Pinot Grigio chilling and I'm ready to do some chillin'.....

OXOX  Hanna

Kerry, They don't EXACTLY glow...you need to put the flashlight up against it and then it 'appears' to glow....it is an absolute HOOT!!!  Have a few glasses of wine on that one!!! 

All I know is my PS said that I will have a cohesive gel, but he had not heard of "gummy bear" implants. So I just assuming that they are different.



Anne

Michelle - I too had bilat in mid-January and had a hard time with it.  I could honestly say that I didn't start to feel better until 3.5 - 4 week point.  I also had my first fill then too so maybe that helped.  I also found a hot shower, pain relievers and muscle relaxers to be a betime ritual.  I also got a prescription for Lunesta to help sleep and that help tremendeously mentally so that I wasn't so drained during the day and feeling like I always had to take a nap.  I also think doing my stretching exercises also helped stretch the muscle and maybe give it that little extra room to breath better.  I have to more small fills (30cc) to go and am still very tight but I do keep up with the stretching.  If I were you I'd probably find another ps and in the meantime maybe she can go back and talk to her bs about the pain.  There might be something out there that works better for her.  I tell you I don't think I'll competely be off the pain meds until after all of this.  I regards to the heating pad my ps didn't recommend it because there have been women that have burned themselves because you don't have much sensation or nerves to tell you that it is too hot.  I hope this helps. Good luck.  Your mom is lucky to have you standing in her corner helping.  Keep trying it may just need a little more time.

Sandy

Hi Ladies,

Jean,

Did the PS give you a reason why he put in silicone instead of saline? What was his rationale for this? You have had sooo many twists and turns in your journey. That certainly is upsetting. Hang in there.

I think that the pain is drasticly under estimated by many of the PS out there. I found the drains to really burn my underarms,and the weight of the tissue expanders to really burn my incisions from the inside out when I bent over to pick something up. Did not expect that also.Generally I think that I felt better around week 4-5 post op and even better at week 6. Pain control seems to be a real issue with some women.Find out what works for you. It is a trial by error process, unfortunately.

Kerry

Hi Ladies,

Jani,

I am getting the gummie bears then, they are the anatomical shaped cohesive silicone gel implants. My PS told me that they are the ones that she uses the most on her breast reconstruction patients. I hope I have made the right choice.Will have to wait and see. Jani, do you have good projection with your implants, will they fill out the end of a bra. Most of the stuff that I have read on other threads is that the projection is not the same as a real breast.And some say to wait 3-8 months for things to settle and drop and then they will look different, and possibly larger.

Thankx,

Kerry

Hi Ladies,

I feel so out of touch.  I've been so busy over the past week I didn't have time to log on.  Now to catch up.

Kerry,  I'm planning to go to 400cc and that should be a full B.  My PS said they usually overfill, so I don't know if I'll go 440 then get a 400 implant.  Did you decide how much you're going to get?

Jani,  I didn't realize the path report documents how much tissue was taken out.  My PS estimated that I was 250 before, that's why I'm going to 400.  I need to get my report just out of curiousity.

Sandy,  You and I share the exact same filling experience.  My first 2 60cc's were fine, the next 2 were horrible.  3 days of horrible pain.  I had a fill yesterday of only 40cc's and it went sooo much better.  I'm still popping major pain pills, but at least I can function and am not couch bound.  I usually wait 1 1/2 weeks between fills.  I'm going 2 1/2 between my next one and see if that helps any.  I asked my PS why I hurt so much, and he said he has no idea why some hurt and some don't.  He said he is treating 10 patients right now and only 2 of them have pain.  Most of them can handle 100 at a time with no problem. 

Anne,  as I said to Kerry, I'm expecting my 400 cc's to make me a full B cup.  What did you decide to do?  Have you cut back on your fills?  It really does help with the level of pain afterward. 

Michele and Donna,  I'm so sorry about all the pain and PS ignorance you're having to endure.  I remember explaining to people that I felt like a boa constrictor was on my chest.  Did she come out of surgery with her expanders partially filled?  Is she going through fills now or is she just dealing with pain from surgery?  What meds is she taking?

Love Ya'll

Laura

How is it that so many women experience no pain and then most of us here are or have had so much pain? This drives me crazy.

At first I thought it must be the stretchiness of the muscles. Maybe women who have strong, toned pecs might stretch much less easily than someone with very soft, relaxed muscles. That really does not make much sense though, as pecs are muscles that are used in everyday life and most people probably have pretty good tone in them.

Now I am thinking that it might depend upon how much nerve damage is done during the mastectomy. The more sensory nerve damage the less painful it will be to expand. There are several nerves running in and around the breast area. It is possible, given individual differences in the exact locations of these nerves, and in differences in the way surgeons work -the amount of nerve damage probably varies from woman to woman. I can start to tell now that the area of numbness is getting smaller (noticeably but not as much as one would like!) and, to a greater extent, the pressure sensation- though still numb in the skin seems much, much more sensitive just under the skin -must be in the muscle. This is very noticeably increasing. Until just recently if I brushed the skin with just enough pressure to indent the breast skin there was simply nothing recorded – like just empty space. Now if I brush my hand across my breast I definitely notice that my breast has been touched. As well, if my husband touches my breast with slightly more pressure than a feather touch – I feel it, even with my eyes closed – and it can be erotic. Sorry if this is too much information, but don’t we all wonder about this? It is also visually erotic so if you think the new boobs are no longer part of your sexual anatomy – at least this is not what I have found.

This enhanced deep pressure sensation is much more evident on one side than the other. Funny thing is the one that is showing more recovery in sensation is the one that caused me more discomfort post mastectomy, all the way through the expansion process and during the recovery from the exchange. It seems to have lagged all the way through and is even taking longer to relax and allow the implant to drop a bit.

So I am not sure if this idea that the less nerve damage might result in more painful expansion and recovery is true, but if so then just maybe we might be lucky in the long run.
 

Take care all,

Jani 

Hi everyone,

Jani, your observations are thought provoking. 

Among this group, we have women who have had skin-sparing mastectomies with expanders where the nipple/areola complex was removed.  It is also possible more of the breast skin was scraped away due to the location of the breast cancer or for other medically sound reasons in some cases.  This would probably have the result of thinner breast skin after mastectomy and possibly less surface sensitivity to the breast skin because more of the underlying tissue, nerves and skin structure being removed.  I think the individual technique used by the breast surgeon must have an impact on nerves that remain.  I have no idea whatsoever how the mastectomy is performed but I do know that every effort is made to ensure the nerves in the axilla are preserved. 

It would seem more likely to me that if you have had a skin and nipple/areola sparing but not the ductal system sparing mastectomy, you would be more likely to retain some nerve sensation in the breast skin and nipple.  So Jani, do you think it's possible your expansion was very painful because you had more nerves remaining after your mastectomy because your areolas and nipples were retained?  I know you said they still react to cold, etc.  I would think your surgeon removed the underlying nipple ductal system as a cancer preventative, but it sounds as though your nipple - even without the ductal system - has still retained nerve activity and that sensation may even improve over time. 

What do you think?  I think this is very, very interesting. 

My PS just went to a conference where there was discussion regarding mastectomy retaining the nipple and areola, only removing the underlying ductal system up to some unknown point at the nipple zone.  I was told there are new statistics showing there is no appreciable increase in bc recurrence to the nipple when leaving the nipple and areola as long as the original cancer was not located in that area.   This is new thinking and will probably be explored as more breast surgeons agree to try this method in appropriate circumstances. 

I think many breast surgeons are still feeling more comfortable doing standard mastectomy with removal of the entire nipple/areola/ductal complex and scraping the skin to eliminate recurrence possibility to the max.  I wonder now about this standard surgery in all cases.  Maybe there will be a compromise available for some women with cancers further from the nipple, particularly if the original cancer is of low grade. Do you know how thin your breast skin was reduced during surgery? 

I don't know how thin my skin was reduced, but I did have the standard nipple/areola/ductal system removal procedure with Alloderm placed during surgery and over the months, I can tell my own skin has grown into the matrix like ivy grows into a garden lattice, because the skin feels more normal and substantive than it did right after surgery.  So far, it seems Alloderm has been of benefit.  Immediately after surgery my skin felt thin, but I can tell it has gotten thicker over these past months, and I'm beginning to have more skin surface sensation beneath the incision.  I haven't had exchange yet so can't comment on the final result.  I also wonder if the technique chosen to recreate a nipple affects any surface sensation.  Do surgically recreated nipples have any topical sensation at all?    

You know, Jani I appreciate your bringing up this part of reconstruction because for many of us, our breasts and nipples were/are important erotic zones not just for our partners, but for us.  I wonder about breast nerve regeneration and its relationship with the brain.  Particularly after nipple/areola/skin sparing mastectomy?   I would think it's highly individual.  I know nipples are erotic zones for men too, but I don't know if as great for men as for women.  I bet if they were, and men were as plagued with breast cancer as women, there would be far more nipple sparing procedures going on!

OK, enough thinking for one day. ?  Time to shop!  The sun is out and I'm beginning to sense spring in the air! 

Hugs girls,

Hanna 

Jani, Hate to blow your theory of expansion but I have virtually total feeling in my foob.....(I actually felt the needle going in and that was my big fear of expansion)  and also have very tight pecs (PS had a hard time getting in a midrange profile implant and HPs were out of the question) and I didn't take ANY meds through expansion except for the first time when I took extra strength Tylenol because I was scared.  I did expand slowly and always told my PS when I could feel it and she stopped then.  My expander also looked good.  My oncologist thought it was my final implant when he saw it.  I find on here (and it frustrates the HELL out of me) that most PS's are filling too fast and too much thus causing at least HALF of the problems on this board.  We also have to realize that it is mainly the women who are having problems who are posting/looking for answers. 

As for the TMI part of your post, I too find that touching my foob is erotic.  I can feel the touch and it is different sexually than my real side (complete with real nipple) but none the less, pleasurable.  

Best wishes 

Oh Ruby!  That is goooood nip news!  I hope I am lucky like you!

!

Now I really do need some retail therapy....I am going to get some self tanning stuff.  Has anyone else seen how self tanning lotion can take pounds off?  I mean visually?  OK, some of you don't need it, but even if it's just an optical illusion, I will buy something that takes about 5 pounds off!

Hi Ladies,

Jani,Ruby,Hanna,

I had a skin sparing mastectomy with the nipples removed (BS recommended this) Really wanted to try and save one or both nipples but he strongly recommended that I should not do this.PS did the markings for the incisions and they were lines right around the nipples. So now my incisions are about 3-4 inches across the foob. I have skin sensation to touch and have always felt the needle go in the expander, and can feel when I massage lotion on the skin. My tissue expanders I think are round, but this is hard to tell. I can put 1 finger between them. My pain problem was due to being filled too soon and too fast. I think some of the PSs are of the mind set that they have to forge ahead with the expansion while the muscle is pliable and able to stretch before it becomes too rigid. The PS resident told me this, but he was also the one that told me that there was not any muscle relaxants that could be prescribed for me. Obviously, not knowing what he was talking about!!!!!! Ruby, you are a ray of hope. Do hope that I have phantom nipple senation also. Told my husband that I would like to get a new personalized license plate for my car and it would say "FOOBS". Imagine how many times you would be asked about that one. Or "LOVEMYFOOBS" or "NEWFOOBS" or "FOOBULOUS".  Gotta have a laugh somedays during all of this stuff.LOL.

To me it would only seem natural to have pain when you are stretching a muscle out and getting it to do something that is not natural for it to do. You are changing the anatomy of the chest and breast. I am surprised that women can go through this with a lot less pain than us. My thoughts on the subject.

Take Care,

Kerry

FOOBULOUS!!!! 

Kerry, I hereby have awarded your word creation a place in my personal word collectors dictionary!!  Quick --- get it patented before it shows up on a T-shirt!!!!

Hanna