Progress monitoring and digital support

Progress monitoring and digital support

If we jointly decide to monitor the aneurysm, it's not a passive decision . For us, monitoring means: regular imaging checkups according to a fixed schedule, consistent management of your risk factors , and a dedicated contact person at the center whom you can reach if you have any concerns.

• Imaging monitoring at defined intervals – we prefer to use MR angiography, which does not require X-rays.

• What we check: Has the aneurysm grown? Has its shape changed? Growth is one of the strongest indicators of an increased risk of rupture and leads to a reassessment.

• Digital support (within the framework of CARE-IA): We are piloting telemedicine support using a smartwatch and app – for monitoring blood pressure and lifestyle factors, and to combat the feeling of being alone between appointments. After the trial phase, it will become an integral part of our care: 24/7 support, regardless of distance – nationwide, without you having to travel.

• A dedicated contact person: the center coordination as a reliable point of contact for questions, appointment changes and findings.

Their fear, daily life, quality of life​

Many people report that the diagnosis is more distressing than the aneurysm itself . The fear of bleeding, the worry about their independence, their job, their family – these are not trivial matters, but rather part of the illness. We take them seriously and address them, even if you don't bring them up yourself.

• Studies show that anxiety and quality of life are a problem in their own right in untreated aneurysms – and that they can be improved through good education and structured support .

• We therefore systematically record anxiety and quality of life (among other things in our studies) – not out of academic interest, but because what is not recorded gets lost in the consultation.

• Services offered: psychological and psychosocial counseling upon request – for you and your family members – referral to self-help groups , and, if you wish, a discussion about how and to whom in your family you want to explain the diagnosis. Experience shows that this is one of the questions that those affected carry with them the longest.

• We answer the question “Do I need to have my children examined?” honestly and with nuance –
  See “Am I at risk?”.

Am I at risk?

Screening – the targeted search for an aneurysm in people without symptoms – is not advisable for everyone. It can provide reassurance, but it can also reveal findings that would never have caused any symptoms, thus triggering avoidable worries. Whether screening is right for you depends on your individual risk. We will advise you on precisely this – objectively and without pressure to undergo any examination.

 

Groups with increased risk (based on current reviews, Lancet Neurology 2025):

• People with two or more first-degree relatives (parents, siblings, children) who have suffered an aneurysmal subarachnoid hemorrhage: Depending on age, smoking status, and blood pressure, an aneurysm is found in approximately 5% to 36% of these individuals during an initial examination. New aneurysms can also develop later, in about 5% of cases every five years. Screening is generally advisable for this group.

• People with autosomal dominant polycystic kidney disease (ADPKD): approximately 10% at initial examination.

• People with certain connective tissue diseases: significantly increased frequency (approximately four times that of the general population).

• Having a single affected relative only moderately increases the risk – in this case, screening is usually not routinely indicated, but a consultation is advisable.

If screening is advisable, it is performed using MR angiography – without X-rays or contrast agents. However, the discussion beforehand is more important than the examination itself: What would a positive result mean for you? What would it change? We conduct this discussion before we perform the examination.

Exchange and self-help

In Germany, people with an aneurysm currently have hardly any organized contact points for each other.
We want to change that and, in the course of our research project, establish a nationwide self-help structure for people with intracranial aneurysms and those who have suffered a subarachnoid hemorrhage – together with those affected . If you would like to get involved, please write to us.