Nikki or Ivy I need your advice...

[karaoke]

So I went to my 6 wk post op appt since my capsulotomy. My breasts are still hard, high on the left side despite a bilateral capsulotomy and partial capsulectomy, and starting to encapsulate again. My Ps didn't charge me any fees for that procedure but now she says that I have to go see a physiotherapist to do aggressive massages and ultrasound and laser. Obviously I am paying for this because she told me to make the appt myself. The one she recommended is way across town and despite their advertised hours their actual hours open are very limited and with my new job at Harley it's going to be near impossible to get time off. When I called back the PS's office to recommend me somebody else, they basically told me to find one on my own. So what they're doing is throwing me out into the cold. My husband is furious at them, and at me for putting up with this. I don't know what i can do about this...we are now thinking about going to another PS for a second opinion. What are your thoughts? I've been waiting since Feb for pretty breasts and I'm running out of patience and I've been so positive and now....

[Ivy]

Originally Posted by Kayoko

So I went to my 6 wk post op appt since my capsulotomy. My breasts are still hard, high on the left side despite a bilateral capsulotomy and partial capsulectomy, and starting to encapsulate again. My Ps didn't charge me any fees for that procedure but now she says that I have to go see a physiotherapist to do aggressive massages and ultrasound and laser. Obviously I am paying for this because she told me to make the appt myself. The one she recommended is way across town and despite their advertised hours their actual hours open are very limited and with my new job at Harley it's going to be near impossible to get time off. When I called back the PS's office to recommend me somebody else, they basically told me to find one on my own. So what they're doing is throwing me out into the cold. My husband is furious at them, and at me for putting up with this. I don't know what i can do about this...we are now thinking about going to another PS for a second opinion. What are your thoughts? I've been waiting since Feb for pretty breasts and I'm running out of patience and I've been so positive and now....

I'm sorry to hear you think the CC could be coming back. I have heard of a lady that did try laser treatment on her CC and if I recall correctly it didn't help her, that's not saying it wont help you - we are all different. Her PS happened to have the type of laser that was needed and she went for treatments in the office. Were you on Accolate after your revision surgery? If you weren't I would suggest you try to get a prescription for it from your PS.

As for the aggressive massage - I think you could probably enlist your husband to do this for you if you can't massage aggressively enough yourself. I'm not sure that *I* would pay to have someone do what I could do myself, especially since you have a new job and cant take time off at will yet.

A second opinion is always a good idea if you think something is askew. Getting a new PS is going to be like starting over, at least monetarily. I hope Nikki will have better advice for you, she has had CC twice.

[Admin]

I think that you need to go to another ps if your current one is basically cutting you loose b/c he/she doesn't want to deal with your problems. I think your ps should have put you on Accolate after your revision surgery to hlep reduce the risk of you getting cc again. I have heard that some women do get results with the ultrasound/laser therapy, so it's worth a shot if you can do it. How expensive is it? How much will it cost per treatment, and how many treatments does your ps think you'll need?

[karaoke]

I was prescribed Accolate and have been taking it for a month. She gave me another script today so I will continue taking it---a double dosage, I was given. I'm really bummed out as I felt that she and I had a rapport but obviously I was just $$$$ in her eyes. I have heard of ultrasound/laser and may still look into it; I've only had a day to absorb all this so far so haven't made any moves but another PS would be the absolute last resort. I've been doing my own aggressive massaging ala Kimberley and hope to see results. Thanks ladies for your input! luv ya!

[Admin]

Be as aggressive with the massaging as you can. I'm not trying to be negative here, but I do have to be honest and realistic with you. Changes are, massaging alone is not going to get rid of the cc. I've had it twice too, and I massaged my breasts like crazy. I wore 2 straps at one time. I laid on my stomach on the floor (hoping to stretch out the capsule). I wore 2 compression bras at once...trying to stretch out the capsule. My ps did a closed capsulotomy on me early on (about 6 weeks post-op), and that didn't help either.

What dosage of Accolate were you taking at first, and what dosage are you taking now?

Bottom line - I know this is very hard for you. I understand what you're going thru with the cc. But, if your ps is not going to do his or her best to get you through these complications, then you DEFINITELY need to see another ps. I know you said it's a last resort, but I really think you need to at LEAST start looking into other surgeons NOW. Judging from the description you gave of your cc, you're very likely going to have to have another surgery to correct it.

Please let me know if there's anything I can do to help. I'm really sorry you're going thru this, hon!!! ((HUGS))

[karaoke]

Thanks Nikki! Not what I wanted to hear but I'm glad to benefit from your experiences. My husband and I talked it over and he's going to look into physiotherapists for me so I can get ultrasound/laser treatments. Apparently (after a little research) they take several treatments over a 3 to 4 week period. And also apparently I should be taking high doses of Vitamin E 1000 for at least a year after surgery, and the Accolate I've been taking the 20mg 2X a day but PS gave me a double dosage (can't read her prescription) but that's what she said. So I'm guessing 4X a day???? Anyway, thanks a bunches and now that I'm doing something about it and not relying on my PS I'm feeling a little more positive.

[Admin]

I took lots of vitamin E too. At one point, I was taking 3000IU/day. My ps said that he didn't think that anything over 1000IU was beneficial.

Did your ps mention anything at all about you having your liver enzymes checked, especially since the increase in dosage? And how long are you supposed to take the double dosage? And are you taking it at least 1 hour BEFORE meals, or 2 hours AFTER your meals?

[karaoke]

Originally Posted by Nikki

I took lots of vitamin E too. At one point, I was taking 3000IU/day. My ps said that he didn't think that anything over 1000IU was beneficial.

Did your ps mention anything at all about you having your liver enzymes checked, especially since the increase in dosage? And how long are you supposed to take the double dosage? And are you taking it at least 1 hour BEFORE meals, or 2 hours AFTER your meals?

You mean the Accolate? No, no mention of liver enzymes. you're scaring me now. She wrote me a script for 2 mos. And I usually took it an hour before meals in the am, then at night time before bed (7 am then around 9 am)

[Ivy]

Originally Posted by Kayoko

You mean the Accolate? No, no mention of liver enzymes. you're scaring me now. She wrote me a script for 2 mos. And I usually took it an hour before meals in the am, then at night time before bed (7 am then around 9 am)

You can check with your primary doctor about ordering a liver panel. Just let them know you are taking Accolate and want this done. If certain enzymes are elevated they will take you off the drug before it can cause liver damage. It's a precautionary measure. After you are off of the medication and it's out of your system your liver returns to normal enzyme levels. It's a blood test. My husband is on Lipitor and he has to have blood drawn every 3 months.

[Dreamz]

OMG Kayoko honey, I'm so very sorry this is happening to you!
Also so very sorry that your PS just pretty much gave you the boot!
Can you fight it with them at all? That's just not right that they can throw you out with no help like that!!!
Please keep us posted dear!
Good luck to you hon, you will be in my thoughts and prayers! (((HUGS)))

Originally Posted by Kayoko

So I went to my 6 wk post op appt since my capsulotomy. My breasts are still hard, high on the left side despite a bilateral capsulotomy and partial capsulectomy, and starting to encapsulate again. My Ps didn't charge me any fees for that procedure but now she says that I have to go see a physiotherapist to do aggressive massages and ultrasound and laser. Obviously I am paying for this because she told me to make the appt myself. The one she recommended is way across town and despite their advertised hours their actual hours open are very limited and with my new job at Harley it's going to be near impossible to get time off. When I called back the PS's office to recommend me somebody else, they basically told me to find one on my own. So what they're doing is throwing me out into the cold. My husband is furious at them, and at me for putting up with this. I don't know what i can do about this...we are now thinking about going to another PS for a second opinion. What are your thoughts? I've been waiting since Feb for pretty breasts and I'm running out of patience and I've been so positive and now....

[Blondegirl]

Originally Posted by Kayoko

So I went to my 6 wk post op appt since my capsulotomy. My breasts are still hard, high on the left side despite a bilateral capsulotomy and partial capsulectomy, and starting to encapsulate again. My Ps didn't charge me any fees for that procedure but now she says that I have to go see a physiotherapist to do aggressive massages and ultrasound and laser. Obviously I am paying for this because she told me to make the appt myself. The one she recommended is way across town and despite their advertised hours their actual hours open are very limited and with my new job at Harley it's going to be near impossible to get time off. When I called back the PS's office to recommend me somebody else, they basically told me to find one on my own. So what they're doing is throwing me out into the cold. My husband is furious at them, and at me for putting up with this. I don't know what i can do about this...we are now thinking about going to another PS for a second opinion. What are your thoughts? I've been waiting since Feb for pretty breasts and I'm running out of patience and I've been so positive and now....

Kayoko,
Sorry to hear that your having problems again. I have been there too sweetie, so I know what your going thru somewhat.
I have done the laser treatments and they worked. My lefty really got soft ( more than the righty and it was fine) It just never dropped and was so far off from looking like the righty again I just had a complete redo.
The laser did work for me and alot of his other patients that used it so I would definatley give it a shot. Ps told me that if it hasn't softened up after three treatments then its probably not gonna work. I went for I think 7 or 8 treatments though. Of course it was free so you need to check on the price first off. ( I believe he was charging $60.00 per treatment)

Secondly I would go ahead and see another ps. I ended up doing that and you know the rest ( happy I did) It couldn't hurt you know.

Here's me e-mail jtcrayton@ctc.net please e-mail me so we can talk some more.
I sure hope everything works out for you . You deserve to be happy with them boobies girl!!!!!

[karaoke]

Originally Posted by Ivy

You can check with your primary doctor about ordering a liver panel. Just let them know you are taking Accolate and want this done. If certain enzymes are elevated they will take you off the drug before it can cause liver damage. It's a precautionary measure. After you are off of the medication and it's out of your system your liver returns to normal enzyme levels. It's a blood test. My husband is on Lipitor and he has to have blood drawn every 3 months.

You see? Now that p----es me right off. Why the heck didn't she tell me all this? Thanks Ivy, I will make an appt with my GP---I was going to anyway post-skanky infections anyway.

[karaoke]

Originally Posted by Dreamz

OMG Kayoko honey, I'm so very sorry this is happening to you!
Also so very sorry that your PS just pretty much gave you the boot!
Can you fight it with them at all? That's just not right that they can throw you out with no help like that!!!
Please keep us posted dear!
Good luck to you hon, you will be in my thoughts and prayers! (((HUGS)))

I know, I keep thinking "can she do this to me?" and apparently she can, I guess. How are you doing lately. And is that avatar you? You look a lot like Amy Lee from Evanescence!!!

[Ivy]

Originally Posted by Kayoko

You see? Now that p----es me right off. Why the heck didn't she tell me all this? Thanks Ivy, I will make an appt with my GP---I was going to anyway post-skanky infections anyway.

I don't know why she didn't tell you about the enzyme tests for your liver. Usually you would only have one test every 3 or so months to make sure it's normal. Since you have been on a double dose I would suggest that you ask for the test to be ordered now, especially since it's a new drug to you and you have no idea how it's working with your liver.

Now that Tonya posted, I think she is who I was thinking about that the laser that didn't work. Looks like I was wrong and it did work, maybe I thought it didn't because she had a revision also.

Let us know what your GP has to say.

[JACQELINERT]

Hey Kayoko, I know you started this thread to get info, but I wanted to send you {{{soft hugs}}} too.

You are strong and smart and upbeat, and I know you will figure all this out and come through it with flying colors. But even for us strong smart upbeat types -- LOL -- these things are stressful, and it's not easy to think it all through, and to feel the disappointment about your body not being it's full beautiful healthy self yet. You are doing a great job! and remember we're here for you!

[karaoke]

Oh Jacqueline you are the absolute best! Yes I need info but I sure could use the support too!! I kinda hesitated cause I didn't want to scare off any newbies but couldn't help myself! I have to get a grip tho cause it certainly isn't the end of the world and it's not like i'm sick or anything but still...it's @#$%^&*!
Again thanks for your sweetness!

[karaoke]

Originally Posted by Ivy

I don't know why she didn't tell you about the enzyme tests for your liver. Usually you would only have one test every 3 or so months to make sure it's normal. Since you have been on a double dose I would suggest that you ask for the test to be ordered now, especially since it's a new drug to you and you have no idea how it's working with your liver.


Let us know what your GP has to say.

Ivy i was just prescribed the double dose at yesterday's PS appt and will be filling it this morning. I've been on the 2X a day 20mg Accolate for a month previous to that. Do you think I should still get a blood test now or wait till after this new prescription kicks in?

[Ivy]

Originally Posted by Kayoko

Oh Jacqueline you are the absolute best! Yes I need info but I sure could use the support too!! I kinda hesitated cause I didn't want to scare off any newbies but couldn't help myself! I have to get a grip tho cause it certainly isn't the end of the world and it's not like i'm sick or anything but still...it's @#$%^&*!
Again thanks for your sweetness!

Do not hesitate to ask for help when you are having a complication. You aren't going to scare anyone off. All the new members need to know about the complications too. They are real and they do happen.

[Ivy]

Originally Posted by Kayoko

Ivy i was just prescribed the double dose at yesterday's PS appt and will be filling it this morning. I've been on the 2X a day 20mg Accolate for a month previous to that. Do you think I should still get a blood test now or wait till after this new prescription kicks in?

If it were me, I would wait another 3 weeks to get a more accurate test. That way the double dose will be in your system. Maybe you should ask your GP what they think - I can only tell you what I would do.

[karaoke]

That's kinda what I was thinking. Besides the longer I can put off going to my GP the better. Guess what gooney husband is doing now? He's on ebay trying to buy me an ultrasound machine.
And thanks for permission to whine. You're gonna regret it big time!!!!!!