continued Tissue expander pain!!

Jackie300

Choward183,

I was allowed to take a shower (not bath) with 2 drains. In fact my surgeon and PS insisted on it. They told me I would feel so much better after taking a shower. I did feel better for a short period of time. I don't know if anyone else was allowed to shower with drains in?

I too had a lot of pain when my arms touch my side. Use a lot of pillows to elevate your arms away from your side when you are sitting or laying down. I slept in a lounge chair for many weeks with my arms elevated on pillows. In bed I would sleep with 3 pillows under my head and one under each arm. I hope this helps and don't be afraid of taking pain medication you are only two weeks post-op. Also, follow your lifting precautions and take it easy because all of the dust and dust bunnies will wait for you.

smmr

Choward183 - 2 weeks out was probably the most painful time for me, plus I think I got a little emotional then also!!  It didn't help that it was Christmas time then either.

The recliner with a little U shaped neck pillow was the ONLY way I could get comfortable.  I think it was at least a month before I could sleep in bed even with a wedge behind me.  My PS wouldn't let me shower either until my drains were out.  I finally couldn't take it anymore and I remember using the hand held shower wand to try and spray myself off while trying very hard not to get any water near my drain site!!  What a sight that was!  I could hardly move my arms the way it was and then I'm trying to be graceful with the shower wand!!  Not a pretty picture!!

A heating pad behind your left side may help along with your prescription pain meds.  I hope you get some relief!!  The drains themselves are quite uncomfortable.  Hopefully you get those out soon and that will help also.  Take care!

psalmist

Choward, I had a lot of pain initially - several weeks!  I started gentle stretching exercises at three weeks and used a bag of frozen peas occasionally to keep down swelling.  The early weeks are tough, I'm not going to lie.  It does get better.

Montana_Mom

choward 183:  I hope your pain is resolving.  The tissue expander could be sitting on a nerve, but I too would report sensitivity to touch to a physician.  I was placed on oral antibiotics for ten days after surgery - were you?

I agree with smmr--  week two was when I was the most emotional, frustrated, angry, and discouraged.  Loving family members, good friends, and much prayer and humor got me through the dark period.

Another helpful "tool" that I forgot to mention:  a kind nurse noticed how uncomfortable I was after surgery (BM w/TE 8-21-08) so she brought me two small pillows, which were made by volunteers, that fit perfectly under my armpits, and then she propped regular sized pillows under my arms.  I felt like I was in a protected nest and was finally able to sleep!  I just about wore those little pillows out during the next three weeks, but if anyone is interested, I will be happy to provide the measurements.  I also slept in a recliner the first couple of nights.  I was able to shower the day after surgery and was given a string to hang the two drain tubes during showering.   

I love the dying queen image - been there, done that.  Now that I am fully expanded and maybe a little softer, I wake up in more of a tripod position; that is, mostly on my side, pillow under the "rock", supported by a bent knee, and hip/butt up.  Not a pretty sight; my husband is a saint. The best nap I took was two weeks ago on a sandy beach in Hawaii, after I dug two holes for the rocks. Ahhhhh!

Best wishes to all.  Sharon   

YvonneB

Psalmist, I sleep in the "dying queen" position too and I don't think I'll get used to it anytime soom.  I used to love to sleep on my side but that is a thing of the past.

RubyCA - don't give up on your expanders yet.  My mom is 71 and after her mast. she chose to have a prosthesis.  She says it is uncomfortable and feels like a huge weight all the time.  She is having a horrible time adjusting to it.  She has had it replace a couple of times and is doing a bit better but she said if she was 20 years younger she sure wouldn't want to put up with it.

Mykidsmom

Choward183 - I have to agree w/ all the posts. Two weeks post-op is about the worst. You are well enough to want to do some things and still sore enough that you can't. I think my biggest problem was the almost bruised feeling I had on my rib cage. Don't be shy about pain meds, that's what they are for. And three-four weeks is so much better. You will get there! Just continue to take it easy.

Ladies -I am two months post BM and I do sleep on my side and sometimes even roll to my stomach (sort of). The secrete for me is a lot of pillows... who said their dh is a saint?!? The best pillow is this small yellow one w/ beads inside. My son had it for airport travel. I make two pockets for these girls and then scruntch the rest around me. And another one to prop myself up and I can sleep on my side. It works. At least I can sleep. I definitely cannot sleep on my back.

Went in for my last fill yesterday and I am not in too much discomfort. This does get easier!

choward183

Ladies..Thank you so much for your support.  My mom came over today and bought four pillows, now I have 8 pillows on my bed!  What a difference the cushion makes!  I am so thankful to God for you strong women that I have been blessed to meet, and of course my love ones.  I have a very strong support system, but I have been a little emotional today.  I am going to the oncologist on Monday.  My path report from the surgery was that the DCIS was contained and I am stage 0.  I am not sure what type of treatment my oncologist will prescribe for me, my doctor's nurse said he may give me something orally or he may not prescribe anything. 

My doctor has me on antibiotics until the drains are out. 

I am a woman of God, and I claim victory of cancer in my body in the name of Jesus!

Jan1

CAZ, thank you for the reminder to be kind to myself.  I am going in for my 3rd fill on Tuesday and I am going to work from home on Wednesday.  I have been kidding myself that I can "work" through this without any consideration for what my body has been through.  I don't know when my exchange date is, but my right mastectomy was on 12-29-08.  No chemo or radiation needed because I did the mastectomy and reconstuction.  No lymph node infiltration. 

Ruby, the muscle spasms are the worst, I still have them, I find that the microbead neck pillow is still the best thing for me.  I conform it around the breast area and it leave a hole with no pressure for the foob.  ( I love that term for the TE and prosthesis)! Oxycodone is the only thing that help, but I am still on the same RX from my surgery.  I cut those puppies in half to stretch them out.  I am afraid my PS won't give me more after the exchange.  I rarely take any meds so this is a big change! I still have 20 tablets left from the original 40, so I have been using them sparingly since surgery on 12-29-08.  

Jan

psalmist

Jan,

It's toughest in the first few months.  The process will get easier and much less painful.  Gentle stretches help, and exercise (believe or not - brisk walking) really helps.  I think getting the blood flowing assists the healing process.   I had some muscle spasms after my initial placement that just about did me in!  I SO dreaded getting my first fill, but thankfully that didn't happen until 5 weeks post op.  Still, my first three fills were much more uncomfortable than the last ones.  

Time is on your side.  In the meantime, wishing you soft, fluffy, pillows, and steady healing.

RubyCA

I was also allowed to take a shower (but not a bath) as soon as I got home from the hospital, even with the drain in. I safety pinned the drain to a string that I put around my neck while I was in the shower. Washing my hair was difficult for the first few times, but it was worth it to feel clean and stand under the hot water.

warrior

I just had a fill today.  I was fine at first but after about 20 minutes I started having terrible muscle spasms/shooting pain.  Is that normal?  Do the spasms eventually go away after several hours or do they last days?  HELP!!  I'm going to try and ask for muscle relaxers to see if that helps.  All I have is pain medication now.  It helps a little but it seems if I make a wrong move...spasm again!  EEEEk.  Not fun.

Mykidsmom

Warrior - Was this your first fill? I have lost track, so many of us are getting fills. Yes, it is normal to have muscle spasms after a fill. How much did you get? I find the first 24 hours are the hardest. I have learned to pre-medicate w/ extra strenght tylenol and then to come straight home where my evening consists of a hot bath (wine w/ it if available) and warm wash cloths over the TE's. That night I resort to lortabs. I generally don't have serious pains after the first 24 hours, but I must say, this last fill has continued to bother me and I am 6 days out already. Another thing I learned early on is to stay warm!! Don't eat ice cream or allow yourself to get chilled. I made that mistake the first fill and thought it was worse than the original BM. BTW: My PS does not like to prescribe muscle relaxers, but others do. Best wishes. - Jean

warrior

Thank you Jean.  What you have said really helped me.  My evening has been quite painful.  This is actually my 4th fill (counting the one they did at time of surgery).  I am roughly around 300cc.  Are Lortabs for pain?  The spasms last about 4 seconds when it happens and boy, that smarts!!!  Thanks for you advice.

Warrior

sam1991

Warrior...I take valium prior to my fill and demerol after it. I'm done with my fills finally. It got much better the bigger I got. I can sleep on my side. Sometimes the spasms get a little annoying so I still take the valium from time to time. 

Good luck.....honestly....in time..it gets better!

Kathie 

kmccraw423

My expanders were removed due to infection but I still get intermittent, very brief muscle spasms, especially in the left breast which had badly puckered.  I can actually move that muscle at will and see it move.  Maybe because it is so tight.  I also get momentary twinges of pain from time to time.  Its weird. 

traceyz

Hey Ladies,

Im going to a Susan G Komen Living Beyond Breast Cancer convention for young survivors in Dallas with my Beyond Boobs girls tomorrow. I will be back Monday. I hope you all have a great weekend and I will be thinking of you as I inhale Tex Mex!!!

Love ya!!

Tracey

Mykidsmom

Tracey - Thanks from all of us. Have a safe trip!!

Warrior - One more thing I forgot to add, I stretch every day. I started about 3 weeks post-op. I think it is a necessity w/ these things! Take care. - Jean

warrior

Thanks everybody for your help.  Last night was VERY sleepless, but it seems this morning the spasms aren't hitting me as strong as they were last night.  Hopefully that is a good sign.  Now my back feels like someone slammed a 2x4 in it...the fun continues!  I will try to stretch gently today, just afraid it will set off a spasm.

sam1991

Warrior....I used...and still do a heating pad on my lower back at night. It has an automatic shut off and I use it on the low setting. If I wake up in the middle of the night...ha ..who am I kidding...When I wake up in the middle of the night, I can just hit the reset button and nice warm heat starts warming my little back. It's done wonders for me and I've never gotten burned or even sorely red.

Kathie 

YvonneB

Hi Warrior, I used a "Magic Bag".  It is filled with something like wheat and can be heated in the microwave.  I used a heating pad too but I had to be really careful because I don't have any feeling on the outside.  My muscle ached like crazy but the skin had no feeling.  That is way too hard to explain to someone that hasn't experienced it!  I think my heating pad ran 24/7 for my first 4 weeks at home recovering and still now (9wks post) I turn it on every second night or so.  I'm beginning to think it is just something to do when I wake up in the middle of the night. LOL

CAZ

Warrior,

My spasms lasted for hours after the fill.  How much are they injecting each fill?  I was in terrible pain with 60cc, but did well with 45cc.  It was like night and day.  Consider slowing down.  I had to get over the feeling I was being a wimp and put my foot down.  I was able to do without the narcotics and valium with the smaller fills.  Be good to yourself and make your PS do the same.

Carol(AZ)

warrior

Thanks Kathie and Yvonne!  I'm going to try the heating pad on my back at least, see if that relieves the tension.

Carol...I am being injected 60cc also.  I think next time I will get less like you said!!!  I am extremely tight right now.

minevicp

Hi there  - I had a right side mx on Jan. 30 w/tissue expander, and have had fills totaling 340 ml. I have to say, each one has been more painful than the last. My latest was yesterday, and last night I couldn't sleep for pain; today it's a bit better, but each breath hurts. Gentle stretching exercises help a but, but I don't have a physio, so it's really hard to know what it OK and what would be too much. I think I'll ask my ps for a reduction on the good side so I won't have to have too many more fills on the other. No-one told me it would be this agonizing; if I had known, I might have gone with a prosthesis. The exchange won't happen for a long time because I expect to start chemo within a month. Hope I can hang in... This thread has really helped me, I was feeling like a freak because I didn't know others had the same experience, and my ps kind of gives me the impression that I'm the only one who feels this way. Thanks everyone!

Mykidsmom

Minevicp - Oh my, you are getting your fills so rapidly. Do they need to be completed quickly so you can start the chemo? Is that why you have so much already? I had my BM on 12/16 and just had my last fill last week for a total of 370 cc. I am slightly uncomfortable, but nothing like what you are dealing w/. It takes time for this muscle to stretch, as my PS has said. It used to be happy sitting tight against our chest wall. Now we are making it stretch out where it never wanted to be in the first place. How many cc are you going for in total? Though I know a lot of ladies get a lot more cc's than me, I have decided that I don't want any more. I don't like the tight muscle feeling and I should be at a large B cup at 370 cc. I bet your PS never had TE's!!

I do find that a hot bath, warm wash cloth and glass of wine helps. I also take a lortab for pain (narcotic) the night of each fill, otherwise I wouldn't be able to sleep.

Gentle hugs. I hope you feel better soon. - Jean

BTW: We are tracking our exchange surgeries on Exchange City. You are welcome to have us add your name even if you don't have a date, many of the ladies are there w/o dates. Just let us know if you want to be added.

minevicp

Mykidsmom - I have no idea why I'm being filled so rapidly, and I don't know what the total is supposed to be, I've just been going by what the ps tells me. I wonder if he might be trying to complete it all before chemo (I don't know the date, but I think in the next month). It would be nice to have a female ps who might understand the pain better ;-) But this thread is really helpful, and next week I'll tell him I can't tolerate these big fills. Thanks so much for your kind words and especially for the gentle hugs!!! I will try the bath/wash cloth/wine, sounds great... By all means please add me to Exchange City.

Thanks again! 

psalmist

Minivicp - sorry for your discomfort!  I felt SO stretched a few times that I didn't think I could keep going.  But after about 3 weeks, it's amazing how much more relaxed my muscles and skin were after my last fill.  It's been 3 months (exchange is this Tuesday) and my "foobs" have even dropped some into a nice inframammary fold.  Your skin may need more time between fills.  At any rate, if you are ready to stop, be assured that a nice full B is a good thing, too!  Very perky and young looking.  My mom (age 75) looks 20 years younger after her bilateral mastectomies, b/c she got rid of all that heavy upper body weight that she dragged around for 70 years.  She LOVES her new small chest.

 Best of luck to you!  I'll echo the others:  warm compresses and very gentle stretching can help. 

traceyz

Hi everyone! I am at a young breast cancer survivor convention in Dallas. I am trying so hard to have a good time but its so hard when i see so many young faces with BC. But i wanted ask this...since i have been fully expanded (575 ccs) I have experienced alot of back pain. im concerned. i have had both my chest and back xrayed and they looked fine. Has anyone else had back pain with the expanders??? Thanks



Tracey

Estepp

HI TRACEY!!!!!!!!!!!!!!!!!!! I can only imagine the sadness of the young faces....

There are many women whose only real TE pain IS in their backs. A lady at my dh's work.. her back was just in horrible pain until she had her exchange. All her pain was in her back... it never really went away after the fills were done either.. it took the exchange.

Poor gal.. I am sorry you hurt. Mine is not in my back... the last two fills I did have back pain , but only for a few days after fills...

Your exchange is just around the corner... hang in there !!!!!!!!!!!!!!!!!

traceyz

Laura,



I just LOVE you!!!! Thank you for answering my post so quickly...I was freaking out. But it makes sense that I have these heavy expanders in and I feel it in my back!! my doc says the same thing. I am trying so hard to keep my head up here, but when you hear all these young stories of advanced BC from 25 year olds it begins to tug on the emotions! I go home tomorrow and I am ready. I dont think i was strong enough for this it is all so overwhelming...I am an emotional wreck, and my back hurts Once again Laura thanks for sharing and I luv ya like I luv icecream, LOL!!



Tracey

sam1991

Tracey..I too am filled to the brim with 710 cc's. My back has always hurt because I've had to sleep on my back. Now it hurts from so much weight and pull. I continue to use a heating pad with an automatic shut off on whatever part of my back hurts It helps immensely. I also use a homeopathic gel called arnica when I can find someone to put it on. That seems to help too. Also use the gel on the expanders to reduce pain and bruising after fills.

Soon honey this will be over....the 18th for me, My friends told me last night we 're having a "squishy" party to replace the fill parties we've been having. We're all gonna wear our bathing suit tops.

Not me....I'm goin' topless....LOL

xxoo Kathie