continued Tissue expander pain!!

Thank g*d for this thread. 

I am just totally at the end of my tether with my expanders, and it is so comforting to know I am not alone.

I had my last fill yesterday, I think...unless I decide to go another 50 ccs...and am due for my exchange Dec 6th.

Because the date is so close I had 2 100cc fills this week. So I guess you can probably imagine the sort of pain I am in. It's not pretty!

 Has anyone used Neurontin before? My GP just put me on it. I'd love to know how long it takes to work and whether it does work!

 Oh, Baxter - I have pretty much not worked for the past 3 weeks. I work for myself and have staff (thank heavens) who have picked up the slack. Last week, especially, I just had to stop, particularly since I was practically stoned on painkillers and really unable to be coherent (mine is a totally 'thinking' job). I hope to be able to go back to work after the weekend for a few hours a day once the pain settles a bit from the super-fill. But I have pretty much accepted that I will only be on half-steam until the exchange. Even without the pain of the fills (or maybe with them) I was still exhausted by 2pm every day and not really able to be fully functional for an entire working day. 

Well, I had my Bilateral Mastectomy with tissue expanders done on June 18th and I am scheduled for my exchange surgery on December 4th.  The expansion process has not been easy for me.  I have been uncomfortable and in pain for 5+ months.  I am so hopeful that the implants will feel better.  I am a little worried that they won't.   Some days I think I will go out of my mind from the constant pain and discomfort.  I do my best to keep busy and function as normally as possible but some days it's really hard. Just remember that you will have good days and you will have bad days, this is a journey and there is no right way to experience it.

I will say that the time has gone fast (thankfully).  Just remember to be good to yourselves, this will end, there is a light at the end of the tunnel (and it's not a train). 

Hugs and prayers to all of you.

Jackie

Hi

I REALLY feel your pain. It's only been three months for me, and I am just HAD IT with the whole process. Please, somebody, give us some hope that there is something other than rock-hard and constantly painful at the end of this road!

 I still can't lie down or I wake up in so much pain. I have to sleep practically sitting up, My last fill was a week ago (I did end up getting a 100 cc top up) and I was stil in pretty much continual painkillers til yesterday. I am now down to 4 hourly panadol (I think that's what you call Tylenol), but just feel constantly sick in the stomach and exhausted. I have to go out of town for work for 3 days next week. I finally told the client what was going on, bc I have been so damned useless and in and out and up and down and now I need a way to explain not only that, but why I can't work full days while I am there.  He was great about it. But I feel awful.

 I already delayed starting the project til a month after the initial surgery thinking that would be fine. To be honest, I really should hardly have been working at all these past 3 months. If there had been any other way, I would have not done it. There have been times I have been downright spacey and dangerous and, I swear, half stoned out of my mind on painkillers. I just can't stomach them any longer, the side effects are killing me, so I am toughing it out from here to exchange. 

Sigh. Sorry for the vent, I am trying to hold it together IRL, because what else do you do? You just wouldn't read about it, would you? 2 days today til the exchange, and all I can think is...here comes more pain. And then the greatest challenge of my life: how the h*ll will I sleep?! We have a fancy bed that goes up and down at the head, so home is easier than it would have been. But OMG, trying to work it all out in a hotel...all I can imagine is creative use of many, many pillows. Just try and explain that one to the front desk!

 Oh well. Onwards and updwards. Hope you are all hanging in there OK and not too close to breaking point

Amy,

I am soooooo HAPPY for you! I cant wait to get rid of the heavy metal chest plates I have now. I will be getting the gummy bear implants, I think thats the same as what you have and I am sooo looking foward to it. I am at 300ccs now and my PS is gonna try to get me over 500 so I can have a full C. I was a D cup pre op. Thanks for letting us know that there is life after the hard chest plates. Take care and best wishes! Oh BTW do you have to get the drains back in with the exchange??

Tracey

Oh, Jackie. thanks for being amused! I feel like such a whiner. 

 So happy to come back here and have some sense of understanding from others. I just want to cry this afternoon, I had such a bad sleep last night and I just want to lie down and sleep without pain so bad! It's 2 weeks til my exchange (yesterday) and I feel like I am counting every minute. I think you just get to a point where it's all too much and you've just had enough. 

 Amy, that is so good to hear, thank you. I am pleased that you came out the other side in such great shape. I just hope, hope, hope it's as good for me. Thanks for taking the time to give us some encouragement. 

 I'll come back again soon. Out of town all afternoon tomorrow with a client, bumpy plane ride there and back and afternoons are my worst, worst times - I have to present to her staff so gave got to be awake and alive. Terrified of getting addicted to sleeping pills but just so desperate for sleep now, think I am going to have to take something again tonight.

Fingers crossed we all have a more comfortable few days.  

Hi All

There are so many places to post on here!!  I just had my exchange last Wednesday - in at 9:30 and on the way home by 3:00.  Surgery went well and I was glad to be rid of those dreaded expanders.  I was in constant pain and discomfort.  Thank God for valium and percocet.  No drains but I have to wear an ace bandage around my upper chest for 2-6 weeks to settle the silicone implants into the new pockets and I'm very nervous about doing damage internally while healing.  My PS said no upper body lifting or exercise until cleared by her.  Is anyone else going through the ace bandage wrap?  Tips?  The new babies look pretty good and the softness is nice for a change.  I start chemo on Dec 5 so that is my next fitness/health challenge.  You are all so brave and lovely - thanks for sharing.

Bobbi

kjbell: I am right there with you. I had my surgery 2 days after you. Right radical mast with expander. The pain was getting worse for me too. And I had the same thought. That had I known it was going to be this uncomfortable I would have given this reconstruction a lot more thought. 

However, just in the last week, it has gotten a bit better. Maybe because I am moving around more, or maybe because I am massaging right where the pain is. I don't know, but it is letting up just a little. If it starts hurting real bad again, I just know I am doing too much and sit down for a while.

I do feel bad for you though having to wait until April for the exchange surgery. Perhaps you should mention your pain to your PS. No one should have to put up with too much pain for too long a time.

Hi Ladies,

Just want to pop in and tell you all that I had my nipples done on Nov. 25/08. After being in foam donuts for 1 week the unveiling happened and this is just what the foobs needed. They are big right now and will need some time to shrink, but I am pleased with them. They really break up the scars from the exchange surgery.  I have to wait at least 3 months to get the tatooing done and am booked for the end of March. Almost done. Hang in there ladies who are expanding. The end results are worth it.

Kerry

I am almost 9 weeks post op and I still can't raise my right arm more than shoulder level.  Lots of burning in my shoulder if I bend my arm the wrong way.  I didn't have any lymph glands removed so I not sure why I am having so much trouble.  Has anyone else experienced this??

Cathee,

It's been a week since my exchange to permanents, so I'm trying to remember back to the initial phase.  If I recall correctly, after my mastectomy with tissue expander placement, I was told not to do any mastectomy stretching exercises for 3 weeks (which help get that shoulder range of motion back), because he didn't want to disturb the TE placement.  After that period I was given permission to do the mastectomy exercises (finger crawls up the wall, butterfly stretch, etc...to help get that shoulder range back and comfortable.

If you are still having such limitations and pain at week #9, the thought comes to mind to see your doctor and ask for a physical therapy referral.  I've read that it's possible for women to develop a condition of muscle tightness to the point that it becomes  "frozen shoulder".  Basically, this can develop if you have experienced limited range of  motion for a period of time (can be initially as a result of surgery, restrictions by pain, or in my case the PS said not to do any stretching or range of motion of the shoulder for 3 full weeks after surgery -- my shoulder area was tight and I had to really work on getting my range of motion back. ) Sometimes, the restricted motion can get to the point like your describing, where you literally can't move it beyond a certain range due to pain.

I'd definitely mention it to your doctor.  If it is "frozen shoulder" or progressing toward that, It might warrant a referral to a physical therapist to help get you back to normal. You may need some therapy to get your tissues gently stretched.  The chest muscle (which the tissue expanders go under) attaches to the shoulder, and puts the chest muscle in an awkward position which can tend toward tightness and pulling in the shoulder, if it isn't gently stretched to regain normal range. 

Definitely discuss with your doctor, and ask about a physical therapy referral.  This is my opinion.  Anyone else have thoughts?

p.s. I'm SO happy to report that after the exchange to permanents a little over a week ago, it's been a piece of cake compared to everything else.  only needed pain pills 3 times after surgery, then after that, have needed nothing!  The new girls are soft.  This is like night and day compared to the expanders.

Hang in there everyone whose in the expansion phase.  It WILL get better.  I'm very happy with my results, and NO PAIN!!!

God bless you,

sue

Soccermom,

I think you'll do o.k. on the fills.  I would recommend working conservatively with your doctor re: the amounts.  Your PS will be asking you each week how your last fill went, so together you can decide how much you want to try on the next one.   My first 3 I had NO pain, and tolerated them well.  I went with 50cc, 75cc, 75cc.  On the fourth 75cc it began to feel tight while he injected, but I thought it would be ok.  I should have told him to stop, because that was the only injection that hurt like h*ll for about 5 days.  (at that point I was expanded to about a D cup)  I took a couple weeks break and then just went back to the 50cc fo r my final fill and it was just fine.  You don't have to rush the fill process.  (I felt some pressure, because I wanted to get the process done before the start of the New Year, when my yearly insurance deductible kicked in again. 

 I think it becomes really painful when you take too much at one time....Listen to your body, if it's starting to feel tight during the injection, just tell your PS to stop.  Don't hesitate to be assertive with your physician. You're paying him/her to provide YOU with a service.  You are in charge.

God bless,

Sue  

Thanks Wings----I have half a valium left from post op;  I'm thinking I should take that before. He didn't prescribe anything, so I guess I'll see how it goes.  Sort of sounds like early fills are easy and later ones tougher.  I wasn't thinking that would happen.... 

Ladies, I guess I might be changing the subject slightly but I wanted to let you know that I have finally posted my pictures on the picture forum.  I have followed this thread for 9 long months and have gotten so much comfort and knowledge from all of you.  Katie where ever you are, I thank you for starting this and for all of you who have come and gone on this site, I hope you are doing well.  I am now completely and totally cancer free!  I love my new bra size and my new life.  For those of you going through the expander process, hang in there!  It has been totally worth it for me.  I wish you all the best!

JanCM

Suedap, I still cannot sleep on my side since my bm w/ expanders in 5/08.  I sleep proped up with pillows and try not to roll on my side.  I still have pain but it does not seem as intense as yours.  You may try sleepind propped up on your back and put a pillow under your knees to keep you from rolling over.  This may help.  I wish you well and hope the pain goes away soon.

I will have exchange surgery 1/5/09 and can not wait.  Thanks to everyone for their encouragement and sharing your experiences.  The thought of soft girls again is keeping me upbeat about the surgery.

Good Luck to all and (((((HUGS))))) are coming your way.

Heymoose

Heymoose thanks for the words of encouragement. I am scheduled for exchange on 2/11/09 and am just figuring worst case is I only have to deal with this for another 7 weeks MAX. That is of course if my 1/26/09 mammo on the left breast comes back ok...thanks so much for the support.