TE TROUBLE
Comments
-
kim40 - Welcome - sorry you are here! I can say that for me the farther along I went with fills the LESS it hurt, which seems counterintuitive. The beginning through the middle point I was uncomfortable but it was nothing I had to medicate (except for the double 50cc fill) but I have gone with low volume fills. Also it was 9 months of having either one or two TE's before the first fill, so i am not the norm of starting them soon after BMX. If you are having pain, you can always drop your volume, but it will take you longer to get to the exchange point. Do you have Alloderm? That may be why it feels like a shelf. The more you fill I think that feeling goes away. I also think that the rounder the TE gets with saline the more it lifts off the ribcage, and takes some of that pressure away.
0 -
Hello ladies,I haven't posted in a while but I read the post weekly. Have you ever felt trapped by your medical care,the decision that need to be made and or your thoughts. it is time for me to make a decision about putting back the TE that was removed along with a fukk hysterectomy-due to my BRACA status. I have been one sided since june when an infection was found.Recently my 7 year log accidentally elbowed me in TE,I have been in pain every since.There has been no change in size no bruising,swelling or redness,Just tender.I have taken my first muscle relaxer tonight hoping to find some relief-it has been about 1 week since the incident. I don't feel I get the quality of care that I should but I feel trapped-my insurrance is Kaiser and very few times do i hear anything positive. I am 43and have a 7 year old daughter. I want to live!I want things to be simple. I notice even with the breast removed I still get moody and have pain at the TE site and the side that has been removed.
0 -
Hello ladies,I haven't posted in a while but I read the post weekly. Have you ever felt trapped by your medical care,the decision that need to be made and or your thoughts. it is time for me to make a decision about putting back the TE that was removed along with a fukk hysterectomy-due to my BRACA status. I have been one sided since june when an infection was found.Recently my 7 year log accidentally elbowed me in TE,I have been in pain every since.There has been no change in size no bruising,swelling or redness,Just tender.I have taken my first muscle relaxer tonight hoping to find some relief-it has been about 1 week since the incident. I don't feel I get the quality of care that I should but I feel trapped-my insurrance is Kaiser and very few times do i hear anything positive. I am 43and have a 7 year old daughter. I want to live!I want things to be simple. I notice even with the breast removed I still get moody and have pain at the TE site and the side that has been removed.
0 -
On top of everything else I think I am developing lymph edema on the side that expander was removed.The non-cancerous side.How can I tell.
0 -
Hey psalms - good to see you again! Firstly, I am thinking you meant to type "full" hysterectomy above? Gotta say - I almost spit out my drink on the keyboard, so thanks for the laugh! Second, on the lymphedema question - are you talking truncal or arm?
0 -
Hi Kim and psalms!
Kim, I do not have an answer to your post as I'm not far along in fills. I'm sure someone in here, like SpecialK can help!
Psalms - I'm not an expert in LE either. But I know that you can have abnormal swelling in the affected side. My mil had it, she called it 'fat arm'. There is an LE thread, have you tried that? I'm going to an LE therapist tomorrow for my first evaluation.
I think casseroles should definitely be investigated by the FDA! lol
Michelle0 -
...I'm glad you said dome SpecialK! I thought that was some kind of new procedure. I didn't want to sound silly and ask, lol
0 -
Oh my gosh,I did mean full hysterectomy-LOL.
Special K-I mean arm lymph edema-noticing swelling at my wrist and forearm.
Mrochon-let us know how the appointment goes tomorrow.
Questions-aren't the expanders made to sustain slight trauma?
My TE feels wet and like something crawling inside-yuck!
Anyone had or has a situation like mine?
Decision about replacement of expander,my PS says he also will exchange the good side out when he replaces the side that was removed.
How was the recovery for a replacement of an expander?
I want boobs so bad,but I am so afraid.
Has anyone had 2 separate procedures done in one operation?0 -
psalms - check the LE forum. The members Binney and Kira are very good sources for LE info. I have mild LE on my cancer side, but it is my "prophy" side which has given me TE problems. Any part of your arm can have issues. During chemo I developed textbook Axillary Web Syndrome pain - I had pain right where the diagram shows. Once chemo was over it took about 3 months for the acute pain to subside. I did receive physical therapy from an LE certified PT. It was very good and I do now have sleeves (I have one for the prophy side too for flying or the gym since I had a SNB on it) and they actually do help. Sounds like you might need both TE replaced, the one I had replaced was an outpatient surgery - I had unusual pain for a few days as a nerve was being pinched. Once the swelling went down it was fine. I think some of the ladies on this thread had both replaced - not sure.
0 -
Kim-I was the opposite of SpecialK. I had very little discomfort with my first fills. In fact, I was able to get 120cc on my third third fill. On my last fill, however, I had so much pain that I had to stay home from work. I had to take Lortab and stayed in bed for three days. I guess everybody's experience is different.
0 -
jbennett - how are you doing now? You are exchanged, yes?
0 -
Psalms- If you have swelling in the forearm and hand you should try to get a referral to a LE specialist just for a baseline measurement. It can be helpful to catch it early.
I also laughed out loud at that typo...so funny and somewhat appropriate error.
0 -
Ok back from my appt this morning. I'm so glad I went. I saw the occupational physical therapist at the hospital that specializes in breast cancer patients and lymphedema. I have mild lymphedema on my right. She went over everything with me. All the surgeries, my pain points and where I'm uncomfortable...all the nook and cranny stuff! She spent a lot of time going over all of that with me. She then fully explained the lymphatic system and what, how and why the surgeries and what's going on inside of me is affecting my recovery and causing the lymphedema. Wow...I seriously feel like this week is a turning point. First with my gyno, getting a second opinion, the bone doctor yesterday and now the PT! Anyway, she went to work on me. Wow...SpecialK you weren't kidding! She massaged my chest, all around my scars and TEs, my upper back, neck arms and did some manipulation and massage at the same time. I told her I want to be back in the gym by this summer, please make me 'me' again. She said, that was totally possible. I now can see myself being able to get up and move. I've been re-born this week. I will meet with her twice next week, then once a week thereafter. After this, we will work on my neck, which leads me to my appt yesterday...
I saw this bone dr yesterday. I've got spurs on C4/5 and C5/6. The dr also pointed out that my cervical spine is bowed, it's curving the opposite way. They felt me all over, did the rotation stuff (PT gal did all this too). Well needless to say I can barely move my neck. This is all degenerative stuff but they think as the PT concurs that this all exasperated by my surgeries and recovery or lack thereof. It's just seizing up on me. They would like an MRI but I can't cause of the TEs. So they are going to do a nerve test...oh joy and see if they can pinpoint the cause of my nerve issues as my neck or if it's cause of the surgeries. They said depending on what they discover, they might send me for a scan. Wooohooooo! Finally someone wants to get to the bottom of my pain and not shove pills down my throat!
Last night was a tough night. I did not sleep well at all. I was in some pain, my neck, arms, TEs were causing some pressure. But I'm ok. I'm on onion whose rotting layers are being peeled away finally!
Oh and the PT wants me to wear my sleeves...ugh. She wants me to bring in what was given to me so she can see if they are fitting right. I told her how tight they were.
Michelle
0 -
mrochon -You are going to love having that LE PT - I didn't want to stop! So glad that you are getting some good attention to the assortment of problems. I have degenerative lumbar problems that have been made worse by Femara, I am uncomfortable much of the time, so I feel ya on your neck thing. One thing about the sleeves. I received ordering info from my LE PT. When I went to the medical device place they measured and ordered me bi-lat sleeves and guantlets in the compression strength I was advised from the LE PT. It only took wearing them for about 30 minutes and both hands were purple. I went back and they exchanged for a different manufacturer - same compression strength. World of difference! So much more comfortable. Generally sleeves are billed on all the same "S" code so wherever you get them you should be able to exchange them until you find the right ones. Believe it or not - the sleeves will really help - especially if combined with Manual Lymphatic Drainage massage. They should teach you how to do it on yourself at your PT.
0 -
She said she was going to teach me how to do it on my own. I got those sleeve back in July. I never wore them but I think it's too late to exchange? I wonder if it would be a problem just getting new ones though.
I've heard about Femara doing that. Scary stuff!
She said that the insurance will say visits are unlimited but they can work around that by coming up with new 'causes'. :-) So they'll be able to keep working with me! You were so right.... It kinda hurt, she was getting in deep but I told her rub away don't mind me I can take it. I was in heaven!
Michelle
0 -
mrochon - did your insurance cover the first sleeves? Mine didn't which is weird because they covered the LE PT, I need to call them again since I made them give me the specific "S" codes for the devices.
0 -
Yes they did, I haven't had a problem with anything needed for treatment so far. I know if conditions change that I can get new stuff.
0 -
I'm drain-free! Yippee!!! We will start expansions in two weeks. I have had to be creative with the whole lopsided situation because I am expanded just enough now that wearing my prosthesis makes me look noticeably larger on the troubled side. I'm hoping the expansion process is uneventful the 2nd time around
My PS said " slow and steady" - which sounds great to me as long as I'm symmetrical by March 26th. That's Spring Break and we are headed to Jamaica. I gotta be swimsuit ready by then.0 -
Hi ladies
It's been awhile since I posted. Just got caught up on all your posts. Hope those who've recently had surgery are recovering well and that everyone else is doing ok with the fills and/or waiting for surgery. Speaking of waiting….I was supposed to have my exchange surgery next Tuesday. PS' office called this aft to say it's postponed until Feb 7th. I'm so disappointed. My final fill was Sept 22nd…it's a long time to wait.
On the bright side, just got home last night from a great trip to Cozumel with my family and some friends. Had a great time. Now it's back to the cold and snow….and more waiting
0 -
Hey Mich! Cozumel?! Wowzers! Lucky you! But that really is a smack of 'back to reality' coming from that to ice!
sundermom - March 26th is my birthday! Can you take me with you???
Michelle
0 -
mrochon - Many insurance companies will let you have 2 sets of sleeves/guantlets/gloves per year. Not sure why mine did not cover.
Mich_M - bummer on the wait! Yay on Cozumel! Bummer on the snow! Life seems to be series of yays and bummers!
sundermom - yay on being drainless! It is always such a relief! Slow and steady wins the race to Jamaica!
0 -
LOL - yays and bummers pretty much captures it!
0 -
We got enough snow last night to make things a MESS. Fluff, how did Indy fair? Of course they didn't cancel school which just made for more of a mess. All you FL gals have no idea.....
Going tomorrow to talk to a dr about getting some spider veins fixed. Anybody ever done that?
0 -
fluff - You're in Indiana? Where at? One of my BEST girlfriends lives in Fishers!
Michelle
0 -
Mich M bummer on the wait.
Michelle-Fluff is south of Indy, but I have a friend that lives in Fishers. My husband and I both went to Purdue.
0 -
Yay for being drain free, Sundermom! Congrats! What a feeling of freedom:)
Mich M...you're almost there! Bummer that you have to wait:(
Not sure if you ladies are on the breastcancersite.com, but I put my story up today (It's under "Winna's Story")
Next fill is Monday. I'm at 180cc's now, need to get to like 520 or something like that. 60cc's at a time. So far, so good:)
Renn...how are you???
0 -
chicakdee - seriously? Small world! Fishers isn't that big of a town. Their last name is Lucas.
Michelle
0 -
Nope, but if she has hugh schoolers I am sure they know each other. That would have been weird if it was the same person!
0 -
Hi everyone,
Saw my BS today for my follow-up. Need to see her every three months for the first year, then twice a year during the second year, and so on. She gave me my foob/underarm exam. All clear. No more mammograms.... I am scheduled to have a MRI every three years with contrast.
While I was in the same complex I dropped by my PS office so they could look at my bandage. All looked good.... My fill is still on for next week.
One step at a time....
T0 -
SpecialK and Michelle-I LOVE my LE therapist; she is making such a difference in my pain level and range of motion for my shoulder. Yesterday I found out the other arm now has lymphedema too so I will be getting a second sleeve soon. Mine is from a company called Lymphedeva. It was covered by insurance once my PS wrote a prescription for it.
My problem is that I have limited PT/OT coverage and I am going to run out long before I am done needing therapy. Has this happened to any of you? I am wondering what it will cost out of pocket...cancer sure does get expensive!
0
