Taboo Conditions!

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Taboo Conditions!

Postby judith » Wed Oct 31, 2012 4:50 pm


Some of you know of me already but I have often wandered how many of you share the same reletively secret conditions as me? These are two conditions that I have never heard mentioned within the GUCH world, even though they are both connected with early CHD procedures, don't forget I am over 50!!

Firstly, I have suffered with Epilepsy since I was 9 years old although this was not divulged to my parents until I was 19 when I had a series of fits and was told that it was likely to have been caused by a stroke that I had when I was 9 wks old. Are there many out there that are keeping a similar secret? I have never intended to keep it from people but I know it is a subject that for some reason people don't like talking about.

Secondly, and this mainly affects the ladies amongst us. When I started to develop in the early '70's it was soon realised that my right breast wasn't developing. This never seemed to be talked about until I said it was bothering me when I was 18yrs. Eventually I was given a breast implant on the NHS when I was 21, but it was not until 1999 that I was told tht the reason I needed it was because of the Y shaped scar GOSH had given me (and I assume many other children) in 1968 had cut through a main artery that fed the right breast.

I have never heard this mentioned so are there many other ladies that had the same problem, and if so did they have implants fitted?

I would like to hear from anyone about these subjects.

L Judith Parker
Posts: 21
Joined: Tue Apr 25, 2006 4:15 pm

Re: Taboo Conditions!

Postby Jane2Blue » Tue Nov 27, 2012 6:51 pm


I had a brain abcess after on of my early surgeries - in the early 80s and had some co-ordination difficulties but nothing as sever as epilepsie - I have studied epilepsy and know that people often feel embaraced about it and suffer form strange reactiosn form others. I have dyslexia and some peopel even over react to that which I find very very strange!

I also had the same breast development issues and when my mum asked about this when I was a teen ager the docotos had the attitude that I was mineor compared to the fact that I might not have survivied! Hopefully and attiduted that has changed Obviously brest reduction/ augmentation are large operations and I opted not to subject my selft to the uneccesary cardiac risk but I have a good prosthetic which I got when I was 31 but this was not fun as a tean ager and I hope that peadiatric cardiology now has a much more integrated approach!
Posts: 83
Joined: Tue Nov 27, 2012 5:47 pm

Re: Taboo Conditions!

Postby paula-43 » Sat Dec 15, 2012 7:14 pm

Hi Girls,
I had a repair of TOF (killingbeck Leeds 1973)and unbeknown to me the surgery did have an effect on my breast development as my left breast was about 2 inch lower than the right, i asumed as i was growing up and developing this was normal for most girls, a bit like we all have one foot bigger than the other!!! so it was never an issue or topic of conversation and they both worked as i feed my son with no difficulties!! lol
It was'nt untill 2001 when i had a PV replacement that i said to my surgeon (for a joke) "any chance you can staighten my breasts up!". After the opp he came round and told me what they'd done durring the surgery , they cut my breast bone in half and restructured it with wires and that my chest was actually in a mess structually from my first opp this was due to the fact i was only 3yrs old and still had a lot of growing/developing to do,
As hubby says he does'nt have to look at them at an angle anymore !!!!! LOL

Posts: 127
Joined: Thu Nov 01, 2012 3:02 pm
Location: john o'groats scotland

Re: Taboo Conditions!

Postby maggie » Mon Dec 24, 2012 12:16 am

Hi i also have blebs on the brain just found this out recently after having a scan done, although they are assuring me at the moment not to worry but if i get more side effects to see my doctor, the onlt thing is what are the side effects? I wonder if this has anything to do with my chd? I am so full of questions at times no wonder i get headaches lol. I had my 1st ohs at 9years old and my 2nd at 39years old, my boobs are pretty much looking in defferent directions lol :roll: and i still get a lot of bone pain in sternum , ribcage and breast bone area, does anyone else get this? I have pretty much came to terms with my frankenstien body as i call it but on down days cannot stand to look at myself in the mirror naked...not a pretty sight :( but on the upside iam here, i have 3beautiful children and a beautiful grandchild, a good man by my side and i do enjoy life, very rarely do i feel sorry for myself.
Its nice to come on here and type down feeling and thoughts helps me sort them out in my crazy little head lol :D
Thankyou Maggie
Posts: 2
Joined: Fri Oct 26, 2012 10:02 pm

Re: Taboo Conditions!

Postby louloulolly » Sat Jan 12, 2013 8:40 pm

I was Brain Damaged during my 2nd heart op in 1983 which has left me with co-ordination problems along with other problems. I was also diagnosed with Epilepsy in October last year and am currently trying to get it under control but I will get there eventually.
Louise :)
Born in September, 1982
Coarctation of the Aorta repaired in 1982 and 1983
Had a stroke in May 1983 after 2nd heart op
Small aortic aneurysm found in July 2012
Diagnosed with 2 forms of Epilepsy in October 2012
Posts: 257
Joined: Fri Jul 02, 2004 1:20 pm
Location: St Helens, Merseyside

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