Good morning
My son is 15 and got diagnose of hypertrophic cardiomyopathy and then at his 2nd check up visit was diagnosed with aortic root dilation. I have been trying to get my head around this. Does anyone have any information on the aortic root dilation please. He has no symptoms yet and is being monitored. We see the consultant next month can you think of any questions which I should ask to help me understand this condition TIA
Hi
I have a mildly dilated aortic root and I get monitored yearly for any changes and mines stable. There are a few causes of this but your sons Cardiologist should tell you why unless he has? Have you been told the size?
Try not to worry at least your son is being checked.
Cheers
Ali
Hi AlisbabasThank you for words. Yes the size from the letter states this Aortic valve annulus 19.5 mm (+0.79), Sinus of Valsalva 33.9 mm (+3.34), Sinotubular junction 26 mm (+2.55), Ascending aorta 24 mm (+1.38) as per Halifax Z scores.
When I asked what the numbers meant she said that I shouldn't worry. He has no symptoms and that's the important thing. I would really like to understand thus but not sure where to get reliable information.
Hi
Mine is 42mm or 4.2cm and they won't do anything I think until 5 or 5.5 so those figures look OK. Hopefully other people can advise too to keep your mind ease. I worried when I first found out but have relaxed as I just need to worry about it when I need intervention.
I hope this helps
Ali
Thank you for giving some clarification it really helps to put things in perspective. It's so hard because it's my child but I will try and relax. I hope your well and continuing to stay under the threshold for any Interventions 🙏
Hi can I ask the size of your aortic root dilation and has it stayed constant or grown and If so over what time period?
Hi
It's was 38mm in 2018, 40mm in 2020 I've just had a mri and echo and just waiting for the results. I will let you know once i get the letter 😌
Cheers
Ali
Thankyou. Are you on beta blockers and blood pressure tablets? Do you have any pain or symptoms with it? Forgive me for the questions.
Hi Yes I get chest pain palpitations light headedness. My blood pressure is always low sometimes too low so no I'm not on beta blockers.How about you, how fast did yours grow?
Cheers
Ali
Hi. Only found out about it last week. Also diagnosed with bicuspid aortic valve which I think is the cause of it originally. No symptoms at minute.
Hi
Yes I have a bicuspid valve aswell
Ali
Have you had the operation and had it done or is it stable.
Hi
its stable at thr moment I think
How do you feel about the op if you need one in the future?
Hi
I was told I would need one eventually, I was scared at first but being on here and getting advice and doing my research I feel alot better now.
There's quite a few on here that have had it done
Cheers
Ali
Yes it really does help chatting on here. It is such a positive discussion.
Can I ask how old you are m or f?
No medication its not me but my 15 year old son
Hi. I see. Hope he is doing well.
Hi
You're welcome, I'm still waiting for an appointment which is late but all I can do is be patient.
Take care and keep us updated.
Ali
Were seeing the consultant next month. Thank you for putting things in perspective from a person point and not all the medical jargon 🙃
I will and good luck and get in touch with the clinic sometimes things get missed so just check and see what's happening. 🙂
Good morning. I understand worrying about your child. I am much much older at 74 and have Aortic root and arch dilation. 5cm and 4.6 cm respectively. Luckily it is stable and I am yearly monitored with a CT scan and Echocardiograph. Your son is being monitored too and should it increase in size ( it may not increase) the surgery is major but to the surgeons very routine and is carried out everyday, he is in good hands, he's monitored, try not to worry too much, easy to say I know, not so easy to do!!!. Good luck. Regards Roy
Thank you Roy. He is at Great Ormond Street Hospital so yes excellent place to be (if you have to be ). Can I ask you has yours increased over time or has it remained the same.
It is so helpful to talk to people with the condition, I know everyone experience is different but having a real living experience makes it easier to understand.
Hi my root and arch dilation was found by accident after a CT scan for another reason. I have no symptoms at all. I have been monitored since July 2017 and the measurements have remained the same. At the beginning I was monitored every 6 months now it's every 12 months. The surgeon did wonder if these sizes were "normal" for me but will continue to monitor me every 12 months. My appointment with the surgeon was this Wednesday. Try not to worry your son is now being kept an eye on and any changes will be picked up quickly and delt with quickly. Regards Roy
Yes, the same as my boy. He was being checked for hypertrophic cardiomyopathy, because his dad has it. He also has it and that's when they found the aortic root dilatation. He is being seen every 6 months and yes you guys are right. I just need to calm down 🤯 and wait if there are any changes.Thank you so much. I wish you continued health x
Don't let this condition spoil your enjoyment of watching you lad grow from a boy into a young man , don't allow this condition to define you or your lad...we all only pass this way once...enjoy every second of the different stages of his growth and life. The hospital will deal with the condition as necessary...Good luck. Regards Roy
Yes, absolutely 💯 % right. My mum always told us as we were growing up listen to your elders they have experience life more than you. Your words are wise. My son has had many challenges since birth but we have always encouraged him to try and experience everything he wants to do. He will be taking part in two shows this month, his ballroom dancing extravaganza and his theatre group performances. So yes we enjoy him an his vitality for life in spite of everything. Its me always been a worrier 😔 when he is not around 😉
I understand completely, we all worry about our children, even when they are grown up lol my daughter is 41 and I still worry about her, but I also have a granddaughter I can worry about now....its all part of being a parent. Enjoy your lad in all he does he sounds like a very special special young man. Kind regards Roy
Thank you 😊
Thank you 😊
Hi, I agree with what everyone has said. One thing that might help is regarding the Z-scores. This is merely a statistical method of comparing an aortic dimension against a range of averages for people of the same age. It's a better way of describing a change rather than a simple diameter. It's explained here: ncbi.nlm.nih.gov/pmc/articl... Scroll forward to the bell-shaped curve. Z=0 means the dimension is exactly on average, but as you can see, two thirds are within a Z=1, and all but a few within Z=2. There are medical guidelines which describe what Z-score would be "of concern" but I'm afraid I don't know what would apply to your son.
Best wishes, and take comfort in the fact that his differences have been found and are being properly monitored.
Thank you Cliff🙂
Hi can you help me understand his last ech & echo. Please don't worry if you can't I'm still struggling to understand the measurements.
So in April his letterstated the following :
There is a visibly dilated aortic root, with annulus measuring 19 mm, root measuring 33 mm (Z=3.2, Halifax data set), sino-tubular junction measuring 25 mm (Z=2.3), and ascending aorta measuring 24 mm (Z=1.5). Maximal septal wall thickness is 10 mm, and more like 6-8 mm at the free wall and posterior wall.
Thank you
Hi LLL56, no problem,
I am not a doctor but for a 15 year old those sizes don't sound particularly large - sometimes all these highly technical numbers can imply a degree of accuracy which simply doesn't exist, since we actually don't know exactly why or when an aorta runs into trouble. e.g. I don't know how tall he is but there are methods (for adults) which relate aortic sizes to body size, either body surface area or height, that say that the taller the person the larger you would expect the normal aorta to be. But again, these imply an accuracy which doesn't exist. The consultant should be telling you the implications of what they have found, and importantly, what the monitoring regime would be for him - how often, what type (echo/MRI/CT) and other important factors and questions like is there any history of aortic disease in the family, has he had genetic tests to find possible genetic mutations?
I'd say the ascending aorta size and Z-score alone is not too bad. The size relative to average (which is what the Z-score represents) is larger closer to the heart (root) and less large as you go away (the sino-tubular junction is at the very base of the ascending aorta, at the top of the aortic valve arrangement). So, the enlargement is greater closer to the heart. That actually makes your son a possible candidate (many provisos) for the very excellent PEARS procedure.
I hope you can get some good answers and understanding from the doctors.
I have aortic route dilation at 37mm. Been told I will be checked every 12 months. Concerned no one understands how fast this has developed so in 12 months how big could it be? My feeling is the MRI was in June and we are two months on. Wouldn’t it be sensible to do the scan now to understand any changes over 2 months and so give an idea of scan frequency? Really worried.
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