TE TROUBLE
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Survivor- I echo the call the dr. advice. That is always the best idea. They can't know what is going on with us if we don't tell them.
Michelle- glad you got checked out.Sorry to hear the PT did not work for you. I have been trying everything. i go for accupuncture every other week and reflexology/lymph drainage. I have worked with a yoga therapist, done some cranial sacral work and most recently have been getting a weekly massage. I am going broke but I am desperate for some relief. I have also gotten to the point where I dread going to bed and I have a nice temperpedic mattress. I can't sleep on either side without cramping up all the way from my neck and shoulder to my hip.. Only on my back which stinks. I take valium about 3 nights a week. Afraid to get too dependent on it. Sorry to hear about work, too. I am having oopharectomy once I recover from exchange and dr thinks I may be out of work till January.I am hoping to go back part time but we will have to see. I teach preschool and don't want to just disppear from the kid's lives.
SpecialK- Thanks. I am excited to get this done!
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Survivor,
Please get some rest, and like the other two ladies said, monitor yourself. And to give yourself some peace of mind, you may want to call your doc tomorrow.
Rest up,
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Ginger - I've got a nice bed too. I hate to say I feel better knowing you do too and are still having issues. I know it's not in my head. You are experiencing the same pains I am! I haven't tried acupuncture yet. Has that worked? I do stretch, I have full movement back in both arms, but that doesn't help for this pain. Sometimes I feel like I have a pole jammed into my neck and shoulders. I'm sure it's just my muscle so wound up and tight from the surgeries and my sleep patterns that they can't relax at all causing further tightness. I would like to have an mri done just in case though.
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Accupuncture has helped some and helps with stress too. Massage has made the biggest difference.the massage therapist says she can feel how tight the muscles are from all the way up in my neck by my jaw down to my hips. I am just praying that getting rid of the expanders will ease things up. My OT who does the cranial sacral work said it feels like my body is reacting to having a foreign body in it and is literally seizing up. Miy pain got really bad after my last fill which was only 4 days after the one before so I think it just set things into a bad pattern muscle wise. I am pinning a lot of hopes that in 8 days some of this pain will be gone.
hang in there...tonight is a valium night for me!
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You had a fill four days after your last? My doctor only does them about once a month a little at a time. Maybe your fills should be spaced further apart? I didn't have any pain or problems with the one fill I had. With exception of the infection which was not fill related.
That is an interesting theory though. It makes sense to me. I think I'm going to seek out an actual massage therapist. So far in my experience 'physical therapists' that work with insurance companies don't really seem like the real deal. They're just cashing in on the insurance money.
I gave in and took a Xanax. Its starting to kick in. I'm getting sleepy.0 -
Michelle- hope you got some sleep. I just had minimal discomfort with my fills all summer which were 60cc one time a week. I had my last fill on a Thursday and thought I was done.I went to consult with the PS 4 days later on Monday and she thought one side needed some extra and then they would be even and I would be done. The PA goave me a full fill. Within an hour I was in spasm and the problems have gone on from there.It was like a domino effect down my body as one by one the other muscles joined in the protest. I had no idea that I could have had some removed which probably would have helped. So hopefully in a week I can start to get back on track.
The massage has given me so much relief. The therapist has a wedge that goes on top of her table that has breast holes in it so even with these coconut boob expanders I can lay on my belly for the massage. It is a therapeutic massage so it is a bit painful but in a good way. I have a friend who does lymph drainage so she has been working on me too.
Just make sure with your dr that it is ok for you to have massage.
Good luck and hang in there!
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Hi All. Wow lots of posts yesterday!
Survivor-I hope you are feeling better. If it is the flu catching it early enough and taking the prescription anti-viral really does help. My daughter did it a few years ago.
Forgot who it was that mentioned wanting an MRI (sorry too many posts)....just remember if you have TE's you can't get MRI's.
Trying to change my picture but it won't let me. Last night's game was cold and wet but so much fun. Definetely a nice memory compaired to all the crap that has been going on!
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yeah it finally let me!
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chick - so cute! Glad you got to go!
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I'm feeling much better today. That Xanax put me right to sleep. I had tidal wave dreams agains. I always have them when I'm under a lot of stress. These waves though were not posing a significant threat to me though. They were huge but they weren't the kind that swallowed people and buildings. Anyone else have tidal wave dreams? I also have tornado dreams when i'm under stress but haven't had one of those for a long long time. Now it's just tidal waves.
I'm refreshed this morning, still have neck/shoulder/head pain but it's in the background and manageable. PS said no pain meds til after surgery. So if these flare up, I just have to suffer through it. Poo!
So no MRIs if we have TEs? What about Xrays? What's the reasoning behind that?
Michelle
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Michelle- My PS used a magnet to find the port for filling so maybe it is the metal that is in the port that makes MRI a no-no?I am just guessing...
My PS said Tylenol is ok before surgery but no advil, aleve, motrin etc. She said valium was ok. I hope I understood her right. I think it is the NSAIDS that thin the blood?
Glad you slept a little better. I did too. No tidal waves or tornado; thank goodness.
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I never understood that magnet thing. I should have asked about that yesterday. When I was feeling the TE before all of this stuff was getting started, I thought it was all heavy plastic including the port. When he filled me that first time, he used what sounded like a stud finder. I had my eyes closed because I have been so traumatized by all the needles that I've endured. I didn't want to see it and make myself hyper-ventilate. Which...I do now when I get IVs, that's another story. Anyway...so I guess that's why he didn't offer an MRI but why an Xray? Hmmmm...
So I can take Tylenol? I always lump that in with all the others. Ok, I'll go buy some.
Michelle
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Michelle...yep you can take Tylenol and Xanax
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Michelle-My understanding is it is the metal in the port that is a no no with the MRI's. I think it even says it on the card I was given when the TE's were put in.
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Ok speaking of cards for TEs...I asked my PS's receptionist for a TE card and she had no idea what I was talking about. Can someone post a pic?
Michelle
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I never got a card either and since these beasts are coming out next week I did not ask for one. I never heard anything about x-rays but have not needed any.
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So I ended up in the ER last night when fever reached 102.8. Took chest x-ray and urine-nouthing showed up. Gave me fluids and broad spectrum antibiotic, am back to being neutropenic but unsure why. Called MO and getting script for antibiotic. Still feels like when I was on chemo-the gift that keeps on giving. Still feverish, but now lowgrade. Thanks for the advice ladies.
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Dawn, You have really had a lot going on recently; I am so sorry to hear this latest development. Enough is enough! I think your body has just had it for now and hope you are able to get lots of rest. Come and vent anytime and keep us updated. Sending healing thoughts your way.
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http://www.bloggalicious.tv/archives/7431
I hope you can open this. I am not smart enough to post a picture of my own card but found this article. This is exactally what my card looks like, complete with the MRI warning. This is totally what I envision happening to me next week, which is why I will have my card out and ready.
Ugh Dawn! Feel better!!!
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OMG! I wait for the day someone does that to me. Swear to god I will rip open my shirt and expose my chest for all to see! You don't want to see my card, well how about this a$$hole?! I'm temper is extremely short this month with all the 'pink' crap being thrown in my face. I got your pink RIGHT HERE!
Dawn, I'm so sorry. But so glad you went to the ER. Fevers are just nothing to mess with for women like us. My daughter developed necrotizing pneumonia when she was 16. People don't survive from that, but she did. But now, everytime she has a fever...it's to the dr and/or emergency we go. You just can't take any chances. Our bodies just aren't the same.
Michelle
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mrockon-dang thats horrible about what your daughter went through-how scary for you both. Rather be deathly sick then have one of my boys ill.
Thanks to all for sweet thoughts. I agree, enough is enough. Sick and tired of being sick and tired.
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I had nipple sparing mastectomy with a tissue expander fitted, which is still in place.
The the top part of the breast has filled out but the lower part of breast by the nipple has folded up like a towel too and is all creased up.
My surgeon said this has happened because I did not get saline put in soon enough. I attended every saline appointment. Noone underlined - I must have so much saline put in or else the skin will fold over, instead, I was asked how much I wanted to have put in!
I usually opted for 70 mls and had most of the saline put in within 6 weeks post operation. I've still got 100mls to go but apparently this is not going to make any difference.
Another surgeon said the lower breast has creased and wrinkled because the becca expander had risen. (apparently the becca expander is not supposed to rise)
Next year when i have the reconstruction, a surgeon is going to see if the skin can be stetched out neat, if it doesn't, I might have to loose the nipple and the lower skin to create a better contoured breast.
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trustinGod - So sorry you are having this problem! I am not familiar with that brand of expander. Did you have saline put in during your original surgery? How much total saline do you have now?
All - I googled the name of the expander that the above poster mentions and came accross an interesting return. It was a summary of a study done to try a new way to minimize infections when placing expanders! The summary basically said that approximately 5-6% of expander patients normally have an infection, but that when they tried segregating the drain from contact with the expander by use of either alloderm or by "tunneling" and applying a cream barrier, they had 0% infection rate. The sample for the normal way was 177 and the segregated way was 23, so much smaller - maybe they just got lucky. Anyway, interesting.
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I have the same card as Chick and on the back the PS stuck on labels that specify the TE type, serial numbers, initial fill volume amount, date and patient name.
Survivor - hope you feel better soon.
TrustinGod - sorry things haven't gone well with your expansion. Hopefully it can all get fixed up with your exchange surgery.
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i had te immediately after my mastectomy on sept 7th. my left breast seemed to heal fine but the right breast has developed an infection. the ps wanted to remove it after he drained it for the past 3 weeks and had me on antibiotics, but instead infectous disease doc put me on a different type of antibiotics. im so afraid to have another surgery as i dont do well with pain. i have had lumpectomy in march, chemo in may-july, mastectomy in sept. i just want to be done already. what are the chances that this $3000.00 antibiotic for the next two weeks will kill this infection? i dont have any fever, just puss leaking from incision and redness to area. has anyone ever healed from an infection due to foreign body (TE)?
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Ihavenoname - crap, sorry you're joining the group, we can all understand the frustration and worry. I'm sorry to say that I was on oral antibiotics for weeks, then moved on to IV and very expensive meds for about 5 weeks, but unfortunately it didn't make a difference. I'm sure there are some who respond to antibiotics, but the infectious disease Dr that I was seeing, said that in his opinion, if there's an infection in a TE/foreign object, that it's almost impossible to get rid of it. I hope he's wrong and that you respond well to the meds.
p.s. wish I knew your name
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Still feverish tonight. 102.3 a half hour ago. MO didn't want to put me on antibioitc yet since I've been on so many the last month-which I was glad about. Hoping it's just a virus that will pass. Surgical incision and remaining TE look fine, no redness. So done with all this.
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ihavenoname... PS's deal with infected TEs all the time; and you still need to see the infectious disease doc b/c you have to get that infection out of your body. But I'm not sure you can cure a TE infection without removing the TE. I'd get a second opinion from another PS... $3,000 is a lot of moola to not work in the end. Good luck and keep us posted!0
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MichM-My card has all that info on it too.
Sorry to welcome 2 new friends. Come here any time to groan and moan. These ladies are good for a pep talk and pick me up.
Survivor-Sorry you are still felling bad.
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Survivor- I am praying for coolness to come your way and get rid of that fever!
Ihavenoname-hang in there!
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