TE TROUBLE
Comments
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chick - I did get the spider veins worked on, but the vascular surgeon said "we have to get these bigger ones first" which hurt like an SOB. Fair warning, I just got more spider veins later! I have a friend that is having her treated by a PS who has some new concoction they have been using in Europe that is supposed to be able to get rid of even the diffuse ones.
Even though I live in FL now - I spent 2 winters in Washington, 9 in northern Virginia and 4 in upstate New York. Believe me I have not forgotten!!! I shoveled a driveway that was two lots deep when I was 9 months pregnant because my DH was deployed. He got home 2 weeks before the baby was born in mid-January!!!
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Ginger - my pt said that they send in new approvals to the insurance for a different area to work or a problem and then it starts all over. She said there are ways around that limitation.
Michelle0 -
Michelle- I wonder if this is true even if you have limited sessions?They are not refusing coverage for the LE but I get 30 for a year and have already used 15 in the fall and about 8 so far with LE. When I get to 30 will they cut me off?
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Ginger - is the limitation a timed one by your insurance? Can your clock re-start for the newly diagnosed arm?
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It is just 30 sessions of OT/PT or Speech therapy a year running from July 1st to June 30th
Not sure if that means at 30 I have no more coverage?
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ginger - that is a bummer that you would have to wait to reset the clock until July 1st. If you have to become a fee-for-service patient sometimes you can negotiate a lower fee, especially if they know that you are out of insurance benefits for the short term.
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Ginger, your therapist should be able to help you figure out what the insurance will do. If your sessions are ending and more can't be arranged, be sure your therapist knows that. In the time you have left she should teach you self-Manual Lymph Drainage massage and how to wrap your arm, and she should make sure you know lymphedema exercises to do and have well-fitting compression garments. With that knowledge you should be able to maintain (and probably continue to improve
!) the reduction in swelling until the new insurance year rolls around. Be well!
Binney0 -
SpecialK - yes I had my exchange Dec. 23. I am very happy so far. I got all my stitches out Tuesday. I didn't feel the immediate relief after getting the TEs exchanged for the implants like some people. My PS had to do a lot of work to get my implants moved in from under my arm. He said they just didn't want to be in that position. I definitely didn't want my implants under my arm!
I haven't gone back to work yet. Sometimes I feel like I'm wimpy about it but I work in a neonatal intensive care unit on 12-hour shifts (7 am to 7 pm) and have over an hour drive each way. I vacuumed today and still had discomfort with that and am a little sore tonight. So, I figure I'll give myself a couple more weeks.
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JBennett,
So happy for you!
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SpecialK-I asked my PS if he would do it and he said no. He recommend a vascular guy for best results. I have one area that is real bad. I must have bruised it and it never healed.
JB-Do not feel bad about not going back to work! I am 8 weeks from exchange now. I am on my 3rd cold of the season (I sub teach and I think I am careful but I guess I am not). I swear my immune system is not where is was a year ago.
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JB-meant from last night's entry that I was happy that you were happy with the exchange results so far....
Take care everyone,
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chick - my SIL had a really bad area on the front of her thigh for years and she had it treated and you would never know it was there - so hope the same for you!
jb - glad you are making progress! I understand about the work thing - I worked in Transfusion Services in a large hospital. I went back 30 days after my last chemo (and 5 surgeries) - it was tough. I was tired after Mon and Tues. By Wed I was coming home and falling asleep in my scrubs as soon as I sat down! I would wake up at 7:30 p.m. but not know if it was day or night and whether or not I had even gone to work! I had another surgery 3 weeks later and never went back. At that point I had 2 PT appts, Herceptin infusions and weekly PS appts. I couldn't do all that and work but I would have had to extend my LTD. I just bagged it with the understanding that I could come back when I am completely done with all of my treatment. You know that it isn't the kind of job where you can run to an appt and then come back 2 hours later! I felt it wasn't fair to my co-workers. I will not go back though because of the stress level. I know you know this too - but when we would get a couple of bleeders simultaneously it was a nightmare. We also controlled inventory for the VA hospital and a sister hospital so if they had a bleeder (or 2, or 3) then we were packing units in ice and getting couriers, it was crazy!
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SpecialK, how is your rash? Hope it is getting better.
jbennett, glad to hear you are happy with your results so far. Hope you are feeling less sore.
Saw my PS this week & my tentative surgery date is now official. Yay! This is the first time since July that my one stubborn spot on my radiated skin is completely healed. I currently have 1 implant & am flat on the other side. Because of my history with skin integrity issues, the plan is to use an adjustable saline implant rather than using a TE, filled slowly. If all goes well, this should be my last surgery. The fill port can be removed in the office & the adjustable implant will be left in permanently assuming we get a close enough match.
I have been very fortunate that my employer has been able to work around my appts, treatments & surgeries, but I work in a much more flexible environment (retail). I am debating whether or not to take a leave of absence after my upcoming surgery so I can fully heal.
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Hi Ladies! Welcome to the newbies, sending hugs to those still struggling, and props to those who are on the healing up-and-up!
I was off the boards for a while, we had a long weekend away and I needed the break from the computer!
I still have a pin hole in the skin of my new right TE. I posted pics on the pic forum. The area is small but it is oozing every-so-slightly. It's def. worse when I have been active (the most I do is walk, but on days when I walk a LOT I have a little seepage). I have less or no seepage after a good night's sleep. This pin hole is trying its hardest to close itself. It has only gotten a tiny bit bigger. The other 2 times this happened, the area grew to the size of a nickel and a quarter. So I am feeling encouraged. I see PS again on Jan. 24. And yes I am tired of dealing with complications! ERGH! ;-)
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Renn, I just saw your pics. Crossing fingers for you that this hole seals up ASAP! That is exactly what I had after I had my implant removed--& mine finally closed up. Your TEs look great, BTW!
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All - the rash seems to be improving, but is now a combination of rough feeling skin and general pinkness. The rough feeling skin is right where the excisions took place. Don't know whether to blame colder weather, generally sensitive skin, detergent, the fates, or that I was doing a lot of painting of walls and ripping out of carpet without a bra on and was chafed by my T-shirt.
Ren - are you eating a bunch of protein - you need 100 grams to help with your healing.
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Hi everyone -- TGIF!
Renn, I just saw your pics - WOW.
I hope that pesky hole closes up soon, enough already! Last night I noticed what I thought was the beginning of a rash on my left side (the side that had to have the TE replaced). This morning it was gone, thank goodness. I like to think that I'm less uptight about this process than I was a few months ago, but then when there may be trouble I find myself right back into paranoid land. SpecialK-glad to hear your rash is improving.
JB-good to hear from you! I say take as much time as you need to recover. You are the only one who can determine when you are ready to go back.
DLL-WAHOO! Good news for sure!
I hope you all have a wonderful, complication-free weekend. I cannot wait for Monday - my LAST FILL day. Definitely a reason to celebrate!
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Mt - hopefully I will be right behind you on Tuesday with the last fill too!
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DLL66: Interesting you had a pin hole AFTER the TE was removed! After my TE was removed, the area healed up perfectly for the first time. SO frustrating! And thanks!
SpecialK: Yes I am upping the protein and am going to eat an egg after I post this! ;-) I'm sorry you are dealing with a rash again. When do you see PS again?
MTnester: I hear you. I thought my head was in a much better place this time but when that hole opened up... Man, I fell into one myself. It's such a trigger. And congrats on coming up to last fill! YAY!
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ren - Tuesday if the rash is gone. He said to just cancel over the phone if it is still there. If I go I get the last fill and then I assume we will set the surgery date and I marinate until then.
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LOL at "marinate". I've been told I have to marinate for three months. Honestly, I'm so excited about not having to schlep to the clinic every stinkin' week for a fill that I've put the three months out of my mind. I'm not a patient person.
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MT - I am only marinating for 4-6 weeks, unless there are surprises. I am actually surprised at how much more patient I have become! The weekly trip downtown is something I am not going to miss. Also there is a Nordstrom Rack right down by his office that my wallet will appreciate me staying out of!
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I really shouldn't complain. My PS's office is 3 hours from me, so a local doctor has been doing most of my fills in town. I only see my PS about once a month. It's just that I've been getting fills since September and thanks to the leaky TE the process has drug on and on! *remember, NOT patient*.
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LOL...marinating huh?
I'm having some pain on my right side, under the TE and my arm feels like its getting heavy and numb. I want to go home but I'm really the only one here.
Michelle
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Ugh! I fear we may have pulled that dreaded drain too early. I have a definite swishing sound and I'm pretty sure it's not the TE. I'm going to try some compresssion to see if I can't keep this from getting out of control. Any other ideas?
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sundermom - I know this sounds silly but try to stay still and quiet too. Don't do too much and see if fluid production decreases with that and some compression. Your body should reabsorb some of that fluid as long as it isn't coming from an actual problem.
mrochon - can you wear the sleeve you have, and do you have something for your hand? How long do you have to stay?
MT - take a look at my diagnosis date - it was learn to be patient or lose what was left of my mind!!! We are at the same point in the process.
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I posted the following: (everyone told me to visit this thread) I had a double mast with TE on Dec. 8th. I would love to say I have been doing everything perfectly as far as my recovery goes, but I know I have not. It has been very frustrating, when for whatever reason, I seem to have more limited recovery instructions than others I have met going through the same thing!Not only that, but feel my recovery instructions have been slightly unclear at times. Regardless, I have been "playing good" for the last week as the cancer side started showing signs of poor healing. Last week my PS told me to put special cream on wound every couple hours to promote healing and everyday the wound seems to be getting wider and more angry.Yesterday, I saw my PS, and he drained 50cc's, cleaned a little of the debris, added lots of sterry strips... he wanted to operate today, explaining that the skin is not getting enough blood, therefore dying, need to remove dead skin and start over. I am not excited about another surgery, so he is giving my wound till Tuesday to get its act together. If substantial healing hasn't taken place, he will be operating Tues afternoon...I would like to take a moment to feel sorry... piss and complain! WHY ME??? haven't I gone through enough? I try to be a good person and mother, certainly, I am not perfect, but I honestly try. How come other people who have the same or similar surgeries get to do arm exercises after a week and I am told to keep my arms at my side for weeks on end... and still do not heal?Okay, done now. Thanks for listening. Now I am going to send all my positive, healing energy to cancer side... please cancer side, be good and heal so we can get on with our lives and treatment. * Can I just say that after reading some of the many above stories... I am freaked out! I really don't want this to get any worse...Has anyone recovered from skin/tissue dying WITHOUT surgery?0
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Also, curious... I am not a big gal, but was pretty busty for my size, 34D to DD depending on bra. Anyway, PS filled my TE's with 350cc's at implantation... that seems like a lot to me, and I know I have had considerable pain because of it!
Anyone else want to share their starting fill amount? I almost think this is happening because of how much was put in... PS has told me over and over that I had very little skin left! I wonder why then he filled so much?
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Wow! 350cc's! My starting fill amount at surgery was 120!
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Hi DM - this is a very informative thread with ladies who have had various problems with their TEs and all with various stages of cancers. You ate in the right place.
First in regard to your restrictions: I was could not move my arms up over my head for at least 4 weeks. I was allowed to reach for things but was under strict orders to keep them down. The area cannot heal properly if you are moving your arms in a normal fashion. Stretching should be a big no no also fir the same reasons. After I was given the ok four weeks post op, I started stretching. Light at first and built upon my progress slowly or as my body would tolerate. As long as there was no pain I could push it some.
I did not have problems with my skin but 350ccs sounds like alot to fill at surgery. I had 200ccs filled in the left at surgery and zero in my right. It just wasn't possible to fill the right. I developed a bad chest infection 4 weeks post op. The tight TE had to be removed that day. I felt just like you! I was upset and crying. I'm not a crier. Its just something that can happen. Anyway needless to say it set me back. But that surgery was very easy and recovery was fast. About a week but I was back on restristions with that arm.
If your dr is filling too much, you are in control to tell him/her to back off. My dr is very conservative. I get 60ccs per month. My rt side is almost caught up with my left. Some women get filled more often than me. So it differs but it's what you can tolerate.
I have nit dealt with skin infection. But it's my understanding that your TE will probably come out. I could be wrong. Others will chime in.
Hang in there. We are all here for you. Sorry you are going through this.
Michelle0
