May 2016 Surgeries

I am aware of that, SpecialK, but I did not get such a card, nor have they mentioned it, nor have they indicated that I would be getting one at any point.

And as I mentioned before, obtaining my hospital records is expensive and I refuse to pay that for something I ought to have ready access to as a matter of technicality.

I don't mean to be rude, but just because it "should have been" and has been done for others does not mean I can force the members of this practice to operate by those rules. Frankly, they didn't even have a signed Informed Consent packet from me to do the surgery until something like 3 weeks *after* the surgery. I had to fight to get information in advance about what to expect because, as I was told, they make it a point not to tell women about complications and such because "it scares them away from having the surgery". Does that give you some idea of what I'm working with?

Raven - yes, but even so, they are the best in the region.

I think they are mostly used to scared women coming through like scared sheep, taking orders about what to do next and following instructions with minimal questioning who have big support networks to take over housework and cooking and such so they don't have to worry about food supply and basic needs being met while recovering.

I'm just not that kind of woman, and I have lots of questions, and I don't have a big supportive family to pick up all the housework and slack, so I've had to do lots of extra planning, which meant presenting a lengthy case about why I needed additional information about this process, and once they were convinced then we sat down and talked.

But I am still annoyed that I was denied the manufacturer's specs for whatever implants they've used/will use in me. I have a vested interest in figuring out how my fake parts will work, react, and what weaknesses they'll have, and I'm annoyed that I can't obtain that information when I feel it ought to be handed to me along with the surgery information.

Just telling me no scuba-diving, no unpressurized aircraft, no martial arts and no car accidents (my PS's list of implant no-nos) isn't good enough for me. I want numbers and pressure-per-square-inch measures.

And seriously, I'm done talking about this. My PS isn't everyone else's PS, and his office isn't everyone else's, and he's still an excellent surgeon in an excellent medical system/cancer center even if he ignored some of the paperwork and visuals that would be really helpful. Frankly, since my surgery we've been focused on my more immediate complications and not so much on the paperwork.

Telling me over and over that I really ought to have the TE specs (so I can post on Whippetmom's thread or wherever) is not helpful.

So let's all please move on to something else. Like how Papillon's doing with her fantastic-looking new set?

Today I got my third fill. I am in so much pain. My PS is 90 minute drive from my home. I had done so well the last two times I took my ibuprofen and Tylenol and off I went. Well I had to pull over on the way home and call for someone to bring the hydrocodone and muscle relaxer and drive me home. Once home it was not better. My fill was at 10 am and I am still in tons of pain. I called the PS and she gave me the OK for taking more medicine but it just is not helping yet. This is actually worse that's the BMX...

GreyKat, I'm sorry you're not getting anywhere with your PS. I know how frustrated you must be with everything that's happened. Can you ask your PCP to request your records? This would get around you having to pay for them (unless your PCP also charges you for a copy!). Anyway, sending ((hugs)).

Maya, my shoulder blade hurt after my first MX, but not down my arm. And I've never heard of the insurance company sending nurses to check up on patients! That's kind of scary - are they there to protect you, or to spy on the doctors?

Mom4four - I had that happen for my first fill! Luckily my husband had driven me, and I won't go by myself again (also a 90 minute drive for me). Hope you feel better tomorrow!

Tomorrow is last day of school for my grandkids (in 2nd and 3rd grades) so we are going out for a celebratory dinner

greykat - no worries, I know you're frustrated, and I am frustrated for you. My concern, and wish for you to get what you need to make decisions, comes from a place of knowing that you need your exchange surgery to be a one and done deal due to the complications you have experienced so far. I'm sorry that your docs are not being cooperative, forthcoming, and giving you the information they owe you.

Maya15 - they gave me Robaxin but it didn't work in the hospital and I told them that, but they sent it home with me. I used ibuprofen after the BMX and that worked for me. When I called to tell them I was in so much pain they sent a script for Robaxin again. They want me to try it, I actually asked for Valium on the phone today because I had heard that it worked for others. She said it has to be a paper scrip... So I am trying what they said till tomorrow. I have difficulty with pain mess and I am throwing up. UGH so over this.

mytoystory - I had an allergic reaction to either the pre-op antibiotic, the Dermabond, or the Medipore/Telfa dressings and had to start on Rx antihistamine to control it. I have a long history of issues with both antibiotics and adhesives, but we thought we had come up with a combination that was not causing problems. It took a solid five days to get it under control - healing is inhibited when you have an angry rash covering the incisions. I had bi-lat surgery with a new IMF incision on the left troubled side, and two incisions on the right - an IMF and the nipple removal, which are each about 5 inches. I had a Breast Cancer Index test done in December to provide information about whether to continue on anti-hormonals. This is a two-pronged result, it shows your recurrence risk and your benefit from continuing the drugs - this is a decision making tool being used by some oncologists now that more are leaning in the direction of continuing beyond 5 years to 10 years. Unfortunately, my result was a high risk of recurrence - I was Her2+, strongly ER+, and node positive - so this was not a real surprise, but it also showed low benefit from the anti-hormonal therapy. Since this test was done on my original tumor sample there is a question of whether or not I have received benefit from the 5 years of Femara I have taken so far. I asked for a PET scan as it has been a few years since I have had one and I wanted to have that info as well to make sure there was no undetected cancer, and it needed to be done prior to this surgery so that the imaging would not be compromised by the surgery itself. The PET showed bi-lat issues, so I had to have a number of biopsies done during the surgery, which showed a number of problems - fibrosis, suture granulomas, metaplasia and inflammation - but, thankfully no new cancer. Now that I have a new smaller implant in the right side it is pain free for the first time in a long time, which is a big relief. Also good to know what was causing that discomfort. After I had been on the antihistamine for a few days we received word that an old military spouse friend had passed away from stage IV breast cancer in Maryland, so we flew up for her funeral. My husband carried all the bags etc., but it was stressful and tiring only two weeks after surgery. I am now feeling pretty good just over 3 weeks out, but I have to pace myself. It is looking like I will need some additional fat grafting, especially on the left, but other than a possible 3D tattoo for the now-nippleless right side, I will be done. I will never look good, but after 16 surgeries, and the degree of complications I have experienced, I don't expect to - I am just happy to have two sort of matching sides!

I did, indeed, make it through the entire day without a nap yesterday – but then was asleep in bed by 9:00 p.m.! Left the teenagers to fend for themselves and get themselves to bed for a night – God knows how long they stayed up on a school night.

Maya15, I have never heard of insurance company nurses in a hospital setting either. Good God, that's frightening. I may be a cynic, but I can almost certainly guarantee they're not there for YOUR benefit, as you surmised.

Mom4Four, I'm so sorry you had so much pain after your fill! Good thing you pulled over when you did – how positively frightening.

Grandma3x, enjoy your day with your grandkids! Sounds like fun. My kids are still in school until Wednesday of next week – so late!

GreyKat, gentle {{{{hugs}}}}} to you.

SpecialK, I chuckled at your "two sort of matching sides" comment. I have lowered my expectations so freaking much at this point, that I would be THRILLED with a "two sort of matching sides" result. I hear ya.

My big plans for the week-end – 1) two week-ends in a row staying out of the ER/OR (it's good to have goals!) and 2) getting my house back in order. Relying on two teenage boys to help clean while their dad has been out of town hasn't been working out so well! Now that I'm feeling better, time to get back on top of things. Fun!

GreyKat, what a wringer you have been put thru trying to get copies of your records. Crazy to say the least! The hospital and Drs I see are in the Indiana University Health System, I can log on and have access to all of my medical records at any time. Some medical institutions are out for the almighty dollar and that's all they see. Jerks!

Sending healing vibes and prayers for everyone here that are recovering from your procedures! ((((All))))

Raven, I'm with you on the whole nap thing! I'm only two weeks out from my BMX, but I really still need that afternoon nap. My kids finished up school on Wednesday. It was nice that they were still in school at the time of my surgery.....I had a nice quiet house to rest during the day. At least my oldest can drive, he will be my errand boy for a while!

Hope everyone has a great weekend!

RavenMI, got it checked out. Not a clot they can see, a pinched nerve. ugh. I'm 2 weeks out and have to have that afternoon nap.

thanks for the warm thoughts.

So sorry myToyStory2. Hoping or a good outcome.

mytoystory - BCO member fluffqueen01 also had pseudomonas and was successful with replacement TEs and implants after a period of having the TE out. I'm sure she would not mind a PM from you if you would like info on her experience - tell her I sent you.Sorry this is happening and hoping it can be handled.

MyToyStory - so sorry to hear about your infection. That kind of major setback just stinks. *hugs* for you.

After a week of going round and round with nurses, schedulers, the usual continuing and followup appointments, and insurance, I finally have an OT appointment for next week for my surgery-damaged arm/hand, and an appt. with a genuine ortho dr.

I have no idea which party is paying for this since my insurance does not cover some aspects of "surgical or medical error" treatment.

I am exhausted. This on top of the usual recovery, ongoing underarm/chest pain, and the constant nerve pain and mobility problems... I'm wiped out. The pain level is nausea-inducing often, so whomever said that above, I totally understand.

I'm 4.5+ weeks out from the mast. and I'm starting to really wonder - two years from now is it still going to pull tight on my underarms and lower ribcage/upper abs (like where the mesh is sewn) when I try to stretch out? Down below it's not so much pain and it is just tight - like the mesh has served to sew my pecs to my chestwall using a piece too short, so I can't fully extend. Does that ever improve? I can't imagine that stuff ever stretches or expands any to give me full range on my abdomen. Does that feeling go away when the implants are in and they squish and move more? It's very disheartening to think I'll never be able to move my torso freely again because there's a "tie" in there that's too short.

I just sneak into your group having had my op on 31st May. It's been a pretty tough 10 days since. The drain is still in which is a pain lugging around this bottle of fluid. I'm missing not driving. One positive thing is hubby doing the grocery shopping and he sticks to the list so we can save $'s.

You have your up days and down days. The waiting for results it the pits especially when the news is always on the worse side.

I'm looking forward to the next step as although the surgeon was happy with his work there is the mopping up to do. Top shelf all the way he tells me.

Being in New Zealand im interested in hearing your stories.

Take care