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Tubular breasts on the NHS...

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Tubular breasts on the NHS...

Post by Heatherbell on 18th February 2011, 6:24 pm

Hiya, I'm a newbie just looking for some answers before I book any consultations for a BA :)
First off, I have self-diagnosed tubular breast sybdrome (not sure how severe tho) and I really really want to get it fixed as it has been making me very depressed. Although I've been wanting surgery for about two years I still haven't got nearly enough money saved up for a BA and I'd like to have it done while I'm still at uni.. So I just wanted to ask if anyone's had tubular breasts fixed on the NHs, and if so did your surgeon do a good job?

I'm not very keen on having surgery done on the NHS, as I've heard some terrible stories and the quality of medical care is very variable. If I had the money I'd go abroad or to a private surgeon but I don't know if I want to wait several more years :(

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Re: Tubular breasts on the NHS...

Post by Rach26 on 18th February 2011, 9:21 pm

Hi there hunnie.

I have tubular breasts (I'm not sure how badly, but in my eyes its bad enough!!!) although I am going private. I understand the money side of things cos I have tried saving, but I have ended up getting a loan.

I am going to get hubby to take some pre-op pics soon, and will let you know once they are up as although you are a newbie I am happy to let you see so you can compare.

Take care hun, look forward to chatting with you soon xx
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Re: Tubular breasts on the NHS...

Post by Heatherbell on 21st February 2011, 2:07 pm

Thanks, that would really help if I could compare myself to someone else. I've looked at pics of tubular breasts online but I haven't been able to find a pair that are close to mine. They even keep the shape of my bra for a couple of minutes before drooping back to their 'tubular' shape.

I've considered getting a loan too but I'm a bit worried about getting into debt since I'm still a student - don't want to add anything to my uni debt already lol But is it worth it to go private?
Aaaagh so many questions!! haha

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Re: Tubular breasts on the NHS...

Post by bigandsmall on 21st February 2011, 3:23 pm

Hi Heatherbell

I think the main disadvantage of NHS is the wait times, but if you're having to wait anyway whilst you save it might be worth speaking to your GP.

Hope you get sorted x
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Re: Tubular breasts on the NHS...

Post by Rach26 on 21st February 2011, 6:44 pm

Ok Heatherbell, I will get hubby to take some pics tonight and will upload then and let you know when they are up.

You are lucky yours stay put!! Mine blooming dont!!!
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Re: Tubular breasts on the NHS...

Post by sianarmstrong on 23rd February 2011, 8:40 pm

hi i had my tubular breasts done on the nhs last june. the care is very good even though i only had them done 8 months ago i developed cc i went in hospital on tuesday 15th feb and they fixed it. they removed the scar tissue and replaced the implant. i waited 10 months from going to see my doctor to getting the surgery, its the best thing ive done and they look so natural.
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Re: Tubular breasts on the NHS...

Post by Heatherbell on 24th February 2011, 1:21 pm

Thanks Rach26! And when I say they stay in palce, all that happens is a can watch them droop shrug But I envy your confidence letting your husband see them, I won't let my boyfriend see my boobs until they're done!

And thanks sian, can you tell me more about your op? Did you get to chose your surgeon or did they just give you whoever was available? Did they cover your replacement at well as the initial op? Did they give you a reasonable choice of implants? Is there anything you'd want to change about your experience? Sorry if I'm being nosy, I just want to get all the info I can before speaking to my GP :)
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Re: Tubular breasts on the NHS...

Post by sianarmstrong on 24th February 2011, 6:55 pm

you dont get a choice of surgeon but when i knew who it was i looked him up and he also worked privatly at spire. everything was covered when i went back for my post op check he told me i needed pocket revision and scar tissue removed
when i first went he said that they might not be fixed with just one surgery and i might need more so i was expecting that anyway. with tubular breasts they always advise teardrop implants, and sometimes tissue expanders have to be used to stretch the skin. in that case you get to choose what size you go. at first i was told i would have expanders they would fill them up each week and when im happy with the size exchange them for the permanent implants.
but when i went in for the surgery he said if he could put the implants in and get a natural look he would just do that and he did. he said he would see what size implant would fit and that would suit my from but he could not tell me the exact size. i was more than happy when i woke with 370cc implants. i have not a bad word so say about the experience the only thing i would change is not is not going to see my gp earlier
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Re: Tubular breasts on the NHS...

Post by laura110 on 29th July 2011, 6:34 pm

hey ladies i have tuberous breasts, currently waiting for my letter for a surgery date. Due to admin errors i have been for 1st consultations with the surgeon 3 times now! its a joke but i cant afford to go private! I have made a complaint now and am waiting to see when I can get the work done, I should have had it done a year ago if it wasnt for the errors in the paperwork! my surgeon initially wanted to do fat grafting but as its a very gradual procedure I am thinking I just want the op like most people seem to have to get it over and done with! how long does it take to heal? I am getting married soon so I want to be all better by then, im so worried about the surgery too! how long did you have to stay in hospital for and did anyone have areolar reduction?
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Re: Tubular breasts on the NHS...

Post by LancsStudent1991 on 12th August 2011, 12:35 pm

Hi, 
I was pretty much exactly in your situation, I knew I had the syndrome for years and finally when I went to uni I realised I really needed to talk to someone about it as it really does get you down. It's difficult to talk about it straight away but you soon lose all the inhibitions, and even without surgery it made me feel a lot better eventually. 
I have seen two doctors about it in two different districts as I moved away to Lancashire for uni. Both NHS' were happy to help the situation. I had a consulatation in March of this year and I had a phone call in July saying they had a date two weeks later for the op. I had heard a lot about waiting lists so I thought this was pretty quick. My surgeon and his team were really helpful and tried really hard to make me feel at ease with the situation. I had to wait around 6 hours before I was given a bed and took down for surgery but other than that the whole stay was smooth. I had TE fitted and am currently waiting for fills before I can have the implants fitted (v. Nervous about the fills!!) The only complaint I've had really is that the hospital were a bit slow with giving me information on appointments and needed a few phone calls to get them on their way! The work that was done (so far anyway) has been great and I cannot complain about the service on the NHS. I know private treatment is expensive and seems a lot safer but the surgeons on the NHS are good and do the best for you so I personally don't think going privately is completely necessary. I'm definitely glad I've took the steps to have the problem sorted and I am on my way to feeling a lot better! I hope it does for you too! 

And Laura, I was in hospital at 11am on Tuesday, but didn't go down until about 7.30pm and therefore had to stay overnight. I was however discharged at 10am and sent home! I am having the areolar reduction when I have the implants fitted as apparently it is better for the shape. I will say that having TE with the tubular greats is very uncomfortable as they feel very heavy. But it will all be over soon!

Best wishes everyone!
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Re: Tubular breasts on the NHS...

Post by laura110 on 27th March 2012, 2:15 pm

hey! i havent been on this site since i joined! lol, how did it all go? x
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Re: Tubular breasts on the NHS...

Post by Heatherbell on 23rd May 2012, 11:06 am

UPDATE!

Hi, I know it's been ages, but I thought you'd like to know that I finally went to my GP last month and asked her to refer me for surgery :) Was so scared she'd laugh at my breasts, or look disgusted, but she was really lovely and agreed to refer me to a specialist surgeon! So anyway, I just wanna ask how long (approximately) it'll take before I hear from the surgeon?
And how are the fillers working out, LancsStudent, or are you till waiting for them?
xxx
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Re: Tubular breasts on the NHS...

Post by laura110 on 23rd May 2012, 12:27 pm

i didnt have to wait too long- first i was referred to the general breast clinic to check there werent any other probs and then i got to see the plastic surgeon... this was 2 years ago due to many admin errors- according to the nhs charter it should be 4 months from gp to surgery! not saying it will be as long for u-just complain if u need to like i did=- i have another appt with surgeon beginning of july so hoping my date can be asap as i have been messed about so much! best of luck- let me know how u get on! xx
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Re: Tubular breasts on the NHS...

Post by Heatherbell on 6th November 2012, 1:06 pm

Nother update - I've been thinking I might hijack this thread and use it as a kind of 'case study' for what happens if you need an augmentation on the NHS. I know the process is slightly different depending on which area you live in, but maybe this will help someone.

Anyway - I had my psych evaluation in May which was ok, although I was totally unprepared for it as the woman on the phone didn't say anything about it being a psych test, so as you can imagine I was nervous as hell. AND THEN I had to have photos taken of my breasts which I was also not prepared for (thankfully I was wearing a bra that doesn't mould my breasts, so at least they looked tube-y enough for the camera).

And this morning I got woken up by a call from the NHS saying they'd had a cancellation and could I come for a consultation at my local hospital this monday. So excited right now, as I haven't heard anything since May! Not sure if I'm supposed to be in contact with my GP or whoever if I want to know how my application is progressing. Basically I'm in the dark as to whether I'm even eligible for surgery or not - though I suppose I'll find out on monday!
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Re: Tubular breasts on the NHS...

Post by COOKIE on 6th November 2012, 1:11 pm

I'm no help where the NHS process is concerned Heather but just wanted to wish you all the best for Monday hun. Really hope it goes well for you fingers crossed xx

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Re: Tubular breasts on the NHS...

Post by laura110 on 6th November 2012, 1:20 pm

oooh exciting heather bell! i have an update too! i have a nurse appt this month and on the 17th dec a bed should be available! need to check i can have time off uni though! =S fingers crossed1 i didnt have to have a psych evaluation though i went to my doctor who sent me to the breast unit in the local hospital to check i had no other issues and then i was sent to the surgeon... (a few years back haha!) its sooo slow but hopefully we will have some joy soon heatherbell! let me know how it goes hon, will be thinking of you and once i have had my surgery i will share pics with you if you like? xx
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Re: Tubular breasts on the NHS...

Post by Heatherbell on 9th November 2012, 4:45 pm

Thanks for your support, cookie!

And congrats on your news, Laura, I'm glad things are moving forward with you! Does this mean you'll have new boobies for Christmas? :)

I have a question tho - I'm still not sure if I've been approved for funding yet, as no one has really said anything. Tbh I'm not even really sure what will happen at my appointment on monday (I'm assuming I'll be meeting with a surgeon, but that's what I thought last time...) And yes, I'd love to share pics - I'm always a bit wary of the before and after ones you see on surgeons pages for some reason lol
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Re: Tubular breasts on the NHS...

Post by laura110 on 9th November 2012, 7:04 pm

yes new boobies for xmas- i couldnt get the time off uni for the operation as am doing teaching and on a placement until the 21st so.... having them done xmas eve! not ideal so it'll be a quiet xmas but what a present to get =) and means i don't have to miss uni which is good! I would say if you are having a consult you have got funding though???
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Surgery consult!

Post by Heatherbell on 18th November 2012, 6:35 pm

Hi everyone! Sorry for taking so long to update, but uni's been crazy lately.

To recap what happened on Monday- I toddled along, arrived at the clinic in time. After waiting for 30mins I was shown into the surgeon's room. I think his name was Dr Depasquale. He took a look at my breasts and said that although I didn't have tuberous breasts, I merely had a constricted nipple, and slight asymmetry. He said a tuberous breasts would be more "bullet shaped". Although he conceded that this made my problem more difficult to correct, he recommended that I just get a straightforward augmentation. Now, I'll admit I was pretty confused by this, as I've seen pictures online of tuberous breasts which couldn't be described as "bullet shaped" and which look remarkably similar to mine. But I decided to listen to what he had to say, figuring that as a surgeon he probably knows best. He asked me a couple of questions, like whether I ever gained weight in my chest area (the answer being no, never, even when the rest of me goes up a dress size).

He didn't say what size of implant I'd be getting, but said that he'd take me up to a B/C cup. This also struck me as odd, because I know for sure that it's tricky to determine cup size based purely on implant size. He also said that because I'm "not the thinnest girl in the world" he'd place the implants over the muscle.

He described three surgery options for me: one involved using expanders, the other involved using an implant and a tiny expander, and the final one was simply popping the silicone implants in through an incision under the breast fold. I said that the second option sounded like the best one for me, as he said it would get the best results in terms of solving the problem with my nipples. However, after thinking to himself for a minute, he said that the best solution for me would be simple augmentation. He then went on to say that if I wasn't happy with the result I could go for another operation later on, and that I'd have to do this anyway as my breast would sag over the implant (which is what they do now - sag, I mean). He also mentioned that an augmentation wouldn't solve my constricted nipples.

If I'm honest, I wasn't happy with this answer at all. But I asked a few more questions and went on my way. I've made an appointment with my GP for this coming Thursday to ask for a second opinion, because the more I think about it the more unhappy I am with his diagnosis. I spoke to my mother (who is a GP herself) and she said I should definately get another surgeon to look at them.

And if that all wasn't disappointing enough, due to the NHS' policy of '12 weeks from consultation to surgery' my surgery date is going to fall slap bang in the middle of exams. So basically, it'll be another 6 months at least before I can get surgery :( I'd started the day feeling so positive that things were moving forward but I spent the next 3 hours crying my eyes out in frustration!
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Re: Tubular breasts on the NHS...

Post by balamoryyellfruit on 18th November 2012, 7:31 pm

I got told at my first BA consultation on friday that i had "tubular breasts" and that for this reason he would do anatomicals (to balance out the shape), overs (because unders would definitely give me double bubble) and 445CC because the width is 13.5cm and my bwd is 14cm so it is the most that my skin would cover. I was gutted that he said this and i didn't know anything about it because he didn't really discuss the condition. I was gutted when i looked it up and the first words i saw were "congenital deformity", i felt sick to the pit of my stomach, i couldn't eat and been crying most of the weekend. But i'm glad to meet other people in the same position and i suppose glad that it's not all just in my head and that there is actually something wrong x x x
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Re: Tubular breasts on the NHS...

Post by laura110 on 18th November 2012, 9:34 pm

twelve weeks from diagnosis to surgery... ermmmmm... i have been waiting over 2 years!
i would defo get another opinion as 'simple augmentation' isn't the best option for us tuberous patients ... my surgeon has said i can have overs as i am a size 12 and 5'7 ish so not super slim and have enough 'on the top pole' to cover the implant... with tuberous breasts the surgeon usually cuts the constricted fibres under the nipple bit to allow it all to expand... i know each surgeon does things differently, my surgeon wants me to have a two stage op with nipple correction second which i wasn't pleased about but he explained it all and his reasoning... but it seems weird ur surgeon said simple augmentation is the way forward for you as most surgeons disagree! get a second opinion! and let me know how you get on!
balamoryyellfruir, welcome! i was upset when i found out it was a congenital deformity, i saw it on embarrassing bodies... i went to the docs and just felt relieved... at least i knew there was a name for it and i could get it fixed. done be sad though, lots of people in the same boat on here and probably even more girls who have no idea and are ashamed of their boobs and don't know its a genetic deformity as its not exactly well publicised! keep us posted how you get on!
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Re: Tubular breasts on the NHS...

Post by Heatherbell on 19th November 2012, 2:50 pm

Aw, I know the feeling, Balamory! I remember feeling that way when I read about it at 18. However, you'll start feeling better about it after a while - there's something comforting about being able to put a name to your problem that gives you a measure of comfort. Tbh that's was the biggest blow for me after my consult - hearing that I don't have tuberous breasts, and that I'm just a freak. I can't find words to describe how horrible the feeling is.
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Re: Tubular breasts on the NHS...

Post by Heatherbell on 19th November 2012, 2:56 pm

@Laura: Thanks for giving me some peace of mind; at first I felt like I was being paranoid but it feels good knowing someone else thinks I should get a second opinion. I've no problem with the overs, as it made sense, but I just didn't like the way he ignored my concern about my nipples. At first he mentioned making cuts around the nipple to free the constriction, but when I brought it up later he kind of seemed to retract his statement, as if he didn't actually think it would work. I got the feeling that he'd only said it to appease me. I'm sure he's a good surgeon, and knows his stuff (he said he's a member of BAPRAS which I know is a good sign) but I just left feeling very uneasy about him. So I'm definately not letting him near my breasts until I've got that second opinion!
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Re: Tubular breasts on the NHS...

Post by laura110 on 19th November 2012, 5:26 pm

yea you defo shouldnt use him unless you are really really sure, i wasnt happy with what my surgeon said about 2 stage operations but i went back to speak to him and he explained why and i feel loads happier now and excited for the big day! (xmas eve!) let me know how you get on! xx
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Re: Tubular breasts on the NHS...

Post by balamoryyellfruit on 20th November 2012, 7:29 pm

Thank you Laura and HeatherBell, i love the support on this forum...apart from Ciantwo i never really got support before coming here. I've decided that i'm going to see the GP but even if the NHS won't fund it for me i don't care i'm getting something done anyway. Ever since i first started getting boobs i knew there was something wrong. I went from a 32C size 8 in my teens to a 36B size 14 in my twenties, i've tried everything from swapping my contraceptive pill to wearing a corset...anything just to make them grow. Now it's sort of a relief having a name for it because i know that whatever i put myself and my body through nothing is going to happen without invasive surgery and i think it's given my husband a better understanding of why i'm so unhappy now too :smiler: just want to thank you ladies for the support and hope that you both get on okay Hug x x x
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