I have finally managed to speak with one of the consultants secretary's this afternoon and I have been informed that I am classed as not high risk..... and I won't be seen anytime soon!
So I have not seen an Aortic Consultant since diagnosis in March, I have a 4.8cm TAA and BAV.
I feel more and more like a ticking time bomb.....
That's a mixed blessing. I know its hard not to worry, but try to take on board that if they don't consider you as urgent you are OK 😊 My BAV was monitored annually but if any necessity is seen to increase that frequency the hospital will react. Best wishes.
Hi Safeangel
I’ve just seen your previous posts about struggling to get an appointment. I’m sorry about the stress this is causing you.
As an alternative, could you speak to your GP instead, tell them about your symptoms and see if they can expedite your appointment at the hospital for you?
I’m not sure how often those with your condition are seen however, I know in my case, they may aim to touch base with me once or twice a year. I’ve noticed that they are less likely to see patients with urgency who they feel are stable.
If you’re feeling particularly unwell, I would suggest 111 to get some advice.
All the best.
Tos
Thank you for all taking the time to reply. Thank you for the BHF nurses number 😊
Please don't get me wrong I really don't want the surgery anytime soon, but I do feel I just need to speak to a qualified human being to let me know the plan of action.
I want to go back to front line policing and now I feel this isn't going to happen for a while.
However I have decided I am going to go back to the gym and try and regain some fitness (no heavy lifting)
I will keep you informed of my journey.
That's reassuring that they don't class you as high risk! I know it can be annoying to be waiting so long to be seen, when you say march do you mean march just gone?? Hope your appointment comes through at some point this year. Do you have annual check ups?? As I would of thought you would with a BAV as I have that and I get onr every year I was born with congenital heart disease though so maybe that's why? Wish you all the best and keep us updated when you get your appointment. ❤️
I have been having check ups on the heart for BAV since 2018 each year, but this is now every 6 months.
It is the TAA I have not seen anyone for at all, and the cardiologist said he is not an expert in this field so only gave me as much information as he knew.
❤️
That's good it's now every 6 months that means they keeping a close eye on you 😉. Oh sorry you haven't had any follow up for the TAA that's odd? Wow first I've ever heard of a thoracic aortic aneurysm what's considered high risk did they atleast tell you that. I can understand you worrying about that! That would be driving me insane not knowing what the next plan of action was?? 😕😳😢. Hope you get a follow up a appointment soon for your TAA hun all the best and in the mean time like Tos said maybe go to your gp and see if they can get refered to cardiologist x I have a follow up appointment on Monday with cardio at gp because of my recent trip to A&E last Monday 🙃. Keep me updated on how your feeling and if you get an appointment though take care and all the best ❤️
Hi Safeangel,
I still think it is very important to talk to an aortic specialist as they will be up to date with the latest guidelines and the changes from previous practice.
If the consultant's secretary was passing on an opinion from the cardiologist (who has admitted he is not an aortic expert), and it was not an opinion from an aortic specialist, I think you're still not getting the advice you need.
In your place I would be writing to a senior consultant aortic surgeon in the cardiothoracic department, not cardiology. A letter is something that will go on the record and can't be ignored. The hospital web site would give you names, start with lhch.nhs.uk/our-services/th... . As an alternative, and it may not be possible for you, but a private consultation could at least get you that opinion.
Let us know how you get on.
Hi Safeangel,
I completely agree with Cliff's comments.
In your situation, I would feel exactly the same, that I need to know the direction of travel and to be much clearer about what level of risk is involved.
You can officially request a second opinion; this is what I did when a non-specialist dismissed my questions about surgery and made it clear he wasn't interested in genetic investigations.
When I actually saw a specialist, genetic testing was offered that ruled out high-risk disorders, though a neck scan did show further evidence of a genetic condition. My threshold for surgery was set at 5.0 cm and medical treatment advised.
The genetics may not be relevant in your own case, but I am sure that a specialist would be interested in having a careful look at your scans, and would be interested in the shape of your aorta beyond the 'headline number' and any changes that may be happening over time.
I found it extremely helpful to sit down with my specialist and view my scan through their eyes; it has given me more confidence that in spite of my aortic size - also 4.8cm - my own aorta is at the lower end of the risk spectrum, based on shape.
I count myself extremely lucky to have been diagnosed by sports cardiologists, who emphasised what I can do and did encourage me to continue exercising, even though their advice meant I had to pull out of competitive sport.
With a stable aorta, optimal blood pressure, and treatment that may be protective, I have now made a limited return to sport (Masters swimming) in addition to continuing relatively slow bike rides and a bit of easy running ... Heavy weights are definitely out, though.
So looking for a sports cardiology assessment - either through the NHS or privately - may be another way to get answers to some of your questions.
All the very best, and hope you eventually get the kind of support you clearly need.
Hi cliff I don't even know what type of consultant he is at Liverpool heart and chest. Maybe I'm wrong and my TAA is not considered high or even medium risk?
I'm just so confused over all of this.
My BAV is going to be checked at my local hospital who found it in the first place but will they continue to measure the TAA as well and then pass this information to Liverpool?
I will find my only letter I have and post it on here and maybe someone will be able to give me a bit more information
Thankyou for your valuable advice x
Safeangel, do you want to private message me the name of your consultant and I should be able to find out what speciality they are?
Yes, it is unnecessarily complicated because there isn't a specific "-ology" for the aorta (even though there should be). There is obviously cardiology for the heart, neurology for nerves etc etc. But the aorta gets handled variously by cardiac surgeons, cardiothoracic surgeons, vascular consultants, and vascular surgeons, all depending on what part of the aorta is affected. Having said that, cardiothoracic surgeons who specialise in the aorta (as opposed to lungs etc in the chest) are probably the most appropriate, particularly for the ascending aorta.
Hi cliff that's the problem I haven't got a name of a consultant. My local cardiologist at the hospital treating my BAV said I needed to be referred so I've been referred to Liverpool and then the story as previously mentioned begins. ..
But even without a name, the secretary you spoke to was a cardiologist's secretary? If so, I think you still need to see an aortic specialist and not just wait for the cardiologist's cross-referral. I certainly agree with a comment below that it would be clearer if you booked a direct private appt with an aortic specialist.
Where I am even to see someone privately you need to be referred but this can be by your own GP.
What I suggest is to ask your GP directly for a referral to the aortic speciality at LCHC. You have the right to make a specific request like that and not rely on the NHS's referral procedures(* see below). You can discuss with your GP whether you want this to be a private referral or on the NHS, and once you've decided they will then write the appropriate letter to LCHC. Ask your GP to state that you are BAV, your ascending aorta is 4.8 cm, [edit addition:] that it has grown from 4.4 cm at [insert date] [end edit ] that you are aware that in the case of BAV it may be advisable to intervene in the aorta earlier than the standard diameter, that you are extremely worried about your risk and that you want the opinion of an aortic specialist.
Good luck
(*My own experience of asking for a referral is that for my first follow-up after my dissection I was seen by a cardiologist who said they would only monitor my aorta by echo. I knew it was necessary to have life-long follow-up using CT and made this request (on the NHS) to my GP who wrote the necessary letter. I had a name and a hospital and directly asked for that referral. I have since had a good 5 years' worth of follow-up CTs and consultations with him and am very happy with the situation, and glad I pushed.)
I also am being monitored by LHCH for an Asending Aortic Aneurysm of 4.9cm. which has been stable for the last 3 year checks by CT scan with contrast. My surgeon is not concerned and will consider surgery when the aneurysm reacheds the range of 5cm /5.5cm. I watch what I lift and self monitor my blood pressure, other than that a get on with life and don't let this condition define me. I am 76 and active I swim and walk but more importantly I chase my Granddaughter around. Be happy your team are monitoring your condition and let them do the worrying, remember this condition is their bread and butter and deal with it on a daily basis. Look after yourself certainly, but don't over worry yourself it's worry wasted. Kind regards. Roy
Hi Roy Thankyou for replying and I'm trying not to worry but I just want to sit down and talk to a specialist but they don't even want to do that with me .
Hi Roy I am glad you are doing ok and being monitored. Was you referred to them ? How long did it take for you to get a face to face appointment with them from referral?
Hi again safeangel. I was already being treated for AF at LHCH when the Ascending Aortic Aneurysm was found during a routine CT Scan, so in affect I was simply transferred from one consultant to another, I would certainly look to go for a private consultation, if nothing else it will put your mind at rest and hopefully stop you worrying. Enjoy your life and try to stop worrying to a point where it is taking over your life, I have been there and it really doesn't help you. It will get sorted, the consultants really do know what they are doing so try to stop worrying and do what you can do which is to watch blood pressure, diet, don't lift to much and please stop worrying!!! Kind regards. Roy
Oh dear!!Its difficult to know what to say to you!! I think.it depends on each hospital and their individual protocol!! also their waiting list at the time..Did they say you were in their operating list at least? Perhaps of you phoned regularly they would be able to tell you where you are on the list. I hope something happens soon and you are seen. Take care
I agree with Cliff G. I just had a look at the link he posted and it gives the email for Mark Field's Personal Assistant: margaret.hughes@lhch.nhs.uk
I would definitely email her and ask how you go about seeing the Consultant.
My other half paid to see a specialist and it wasn't as expensive as we thought - £275.
If you have a private initial consultation you could be seen within weeks. This may give you the answers and reassurance you are looking for and you can then decide if you want to be transferred to this consultant's NHS list.
Good luck.
Thankyou so much I really can't say in words how helpful you have been x I will email as stated and also see my GP regarding a private consultation with a specialist if I don't get any look with the hospital.
All you lovely people are angels in disguise xx
Apologies, hadn't realised, will edit them out.
No, I didn't, though I've never mentioned names of those treating me or others, or even their hospital, but I suppose yes, it does apply to recommendations for future possible treatments too, since that could later be tracked back. Thx anyway.
Have you looked into the PEARS procedure? For me it was a much better option. I had to self refer myself as my cardiologist didn’t suggest it to me.
check out exstent.com
I agree it is well worth considering, if your valve is not causing major problems (apart from the aortic dilation). PEARS is the ultimate valve-sparing procedure, and has been done for a fair number of patients with bicuspid valve disease. However, if it seems likely that the valve will have to be replaced, it is not so relevant. And occasionally, when the root is not enlarged, there might not be enough room below the coronary arteries to fit the ExoVasc. Liverpool don't currently do PEARS, but they do work with the Royal Brompton, in London, who pioneered it and are also using it in conjunction with the Ross Procedure, which can be an option for younger people who do need their aortic valves replaced.
Hi Safeangel, I had an AA in my riding aorta. Do not be afraid to ‘rock the boat’ like I did. In fact I waited from August to January. My Op should have been in January but as my locum consultant had moved on, there was a lengthy list. I asked for a new named consultant as at that time I was just left without one. They accepted my request and I had a new consultation. He muttered something about unlikely to be done before April. I wrote into the CEO of the hospital and within a week I had a date in February. You have to fight your own corner with the NHS. I simply wrote a ‘letter of concern’ quoting their published waiting times, which were outdated as well as a study undertaken in Wales (Not my area) where people had been dying before ever getting an operation date.
Good luck but politely document your concerns as I can assure you that I too felt like a ticking time bomb was within me.
Regards,
Andy
Thanks Andy I just get so fed up with the lack of communication and they tell you not to get stressed. I really want a normal life. I want to get back to my front line policing job, I want to book holidays, I want to enjoy life again without this massive cloud hanging over me.
I'm pleased to hear you are all fixed and hope life is good for you x
If it helps my aneurism was 5.1cm.
See below:-
Surgery is commonly advised if you develop an AAA larger than 5.5cm in maximum diameter (about 5 cm in women). For these larger aneurysms the risk of rupture is usually higher than the risk of surgery. If you have a family history of ruptured aneurysm; surgery is also likely to be advised.
Hi Safeangel, I had my operation at the Trent Cardiac Unit at Nottingham City Hospital. I was 56yrs old at the time. My operation date was 27.2.2020. My surgeon was excellent but now not long retired.
I am happy to hear you are 3 years post op and wish you a very happy retirement Andy . I'm 54years young lol so not far behind you. X
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