Any recommendations on type of psychotherapy to help cope with aneurysm diagnosis?

Support
1

Hi, I’m new here, 39 years old and I recently discovered I am now a member of the unruptured brain aneurysm club. Came her to ask for some first hand recommendations. I struggle with depression and anxiety and finding out about the new condition, undergoing further scans and exploring surgery options has made my mental health worse. I feel I have hit a wall or a dead end with my current therapist who is specialised in DBT.

So I was wondering if anyone here found that specific type of psychotherapy has helped them cope with fears, uncertainties and anxieties regarding medical issues?

Also, are there any online support groups / meetings for people with our condition? I tried looking but couldn’t find anything.

Thank you so much in advance.
L.

2 Likes
2

Hello Lazarus,

Welcome to the group. Thank you for reaching out.

The hospital I had my endovascular surgery at has a monthly stroke/avm/aneurysm support group for patients. We meet virtually on Zoom. Have you asked your medical providers if there is anything similar in Belgrade?

I did a lot of guided meditation and breathing exercises between my diagnosis and my surgery. A LOT. For six months I would stop and listen to a session several times a day just to calm and center myself. Because I was very scared. I know it doesn’t resonate for everyone, but that really helped me a lot.

Some meditations were from a series for cancer patients but were about anxiety and fear of the medical unknown and were very helpful for me.

I used the Calm app, because I get an annual subscription free through my healthcare organization. I also did the guided breathing exercises daily.

And a friend of mine who is a psychotherapist made a recording of a guided meditation about healing after surgery that she sent to me the night before my procedure, so it was very special to practice with her voice.

—I’m editing this to add I’d already done EMDR, DBT and CBT therapy before my diagnosis and I do have a regular therapist who of course was supportive, but the guided meditation & breathing helped my anxiety and fear more. One of the members of my local support group is a big fan of Acceptance and Commitment Therapy.

I hope other folks chime in with resources and that you find support that helps you

Sincerely,

Kaile

2 Likes
3

Hi Kaile,
thank you so much for taking the time to reply. I looked, but am afraid there are not any support groups available for this kind of condition in my country. There are barely groups for people with cancer, unfortunately. I think we’re not a place where this type of patient support is generally available, and people are mostly left to cope with issues alone. Which is why I found this website and trying to find international / english speaking support groups or Zoom meetings.

I admire your persistance in doing meditation - I have Headspace app but I can’t make myself to do it even though I know it could help in the long term. I will do my best to try again and again. Thanks for mentioning Acceptance and Commitment Therapy, I will check it out.

I hope you’ve recovered well after your surgery and are now able to live a free and healthy life :folded_hands:t2:

1 Like
4

I can relate! Sometimes the hardest thing for me to do is also the thing that will make me feel better.

Okay, I hope it’s not bad form to post about another aneurysm support org, and maybe you have already found them in your search, L., but it looks like The Aneurysm and AVM Foundation has a monthly “UK/Europe” Zoom support group and they also list an International Stroke Support group w monthly Zoom meetings that you might reach out to to see if they welcome cranial aneurysm patients.

https://www.taafonline.org/Support-Groups#:~:text=International%20Support%20Group-,Friends%20of%20The%20Aneurysm%20and%20AVM%20Foundation,for%20our%20support%20group%20meetings.

Maybe someone else in this group has feedback about either of these Zoom support groups?

:sunflower:
Kaile

1 Like
5

Welcome @tropical!!

We are so very glad to have you hear with us, and I am grateful that you have joined our little family.

I also am proud that you reached out - what a beautiful thing! You remind me of a quote I recently stumbled across by Carl Jung, “I am not what happened to me, I am what I choose to become.” Thank you for choosing to become something better.

Admittedly, I come from the other side in that my aneurysm ruptured, so I was blissfully ignorant it existed, and did not have to deal with all the stress of watching, waiting and wondering that you have. All of you that do have my awe and admiration.

@Shinykai has already done a great job :clap:, and I have yet to find a separate online support group in Europe (one sample search). We do have some members throughout the world, so I too hope someone in Europe will be able to identify a resource. If you are on social media, there are some US-based groups that meet using that platform, so you may want to try looking around there as well (I am not).

However, while poking around, I found a UK organization HBA Support (HBA = Hereditary Brain Aneurysms), and they posted a guide on Living with Health Anxiety. My guess is you likely know all this already, but at the end they do have a list of online support groups, admittedly with a UK focus, but perhaps you may get a tip or two.

Kaile, however, did get on one of my strategies post-rupture, and that is meditation/mindfulness. Personally, my favorite go-to app is Healthy Minds. It is a free app that is East-meets-West, so it has meditation practices intertwined with neuroscience lessons, so I just love that, as I have become pretty fascinated by our brains post-rupture! It is also pretty ad-free as it is tied to a university in the US, so maybe once a month you’ll get an email, so I appreciate that tremendously.

I also have two separate wearables: each is tied to different (limited) meditation programs (Calm.com and Fitbit), so I alternate doing those as well for variety’s sake. Like you both, getting into the habit was not easy - especially post-rupture when short-term memory was at a minimum! :rofl: What finally helped me was to download one of those task apps (like Google Task, or whatever works for you), and I just set up my daily tasks on repeat - namely exercise, meditation, and “brain games” are my constants for brain health. This way, it is harder for me to ignore or forget (yes, exercise, I know you are still left for today…). Like @Shinykai, I end up meditating multiple times a day now, some just as a matter of routine (e.g., calming down after traffic or after work), but some days I sense how tense I am which will inspire me to do another session.

Finally @tropical, do you have the option of looking for a new therapist? If you really think you have hit the wall with this one, are you able to find someone else who can help you for this next phase?

I am thinking of you and sending good thoughts your way. I am really happy you reached out to all of us, and please continue to do so as you need. We will be here for you!

Fin Whale Fan :whale:

3 Likes
6

Hello friend, welcome.

My unruptured aneurysms were discovered in early June, and two of three have now been treated. Reading your post took me back to those terrifying first days before I found this lovely group of experienced and very reassuring people from around the world. Having always been a bit of a loner, I’ve found a sense of community here that has made opening up and being vulnerable about my anxieties and my accomplishments far less scary. I hope you do, too.

Due to carrying a lot of stress and trauma, and feeling it was time to address various changes in my life, I started cognitive behavioral therapy back in February. I’m grateful I had that support when the diagnosis came and through the treatment and recovery. I find myself feeling like my sessions are so trite and that my therapist must be bored to tears, but it’s incredibly helpful for me to process what I’m thinking, feeling and planning to do about both with a professional.

I’m sure you’ll find this group to be an invaluable source of information, advice and optimistic support. We’re all with you, hoping for the best outcome for you.

5 Likes
7

This is amazing Katie, I somehow missed this group. I’ll definitely try it out. Thank you so much :folded_hands:t2:

1 Like
8

Hi Fin,
It’s so kind of you to take the time for this reply, I really appreciate it. :folded_hands:t2:
I did look up other support groups, joined few Facebook groups and this forum, looked up subreddits too, but the reason I asked specifically for online meetings is because I could’t seem to find any in this overwhelming see of content which can sometimes be disturbing. People post about worst case scenarios and horrible things that happened to them which can be quite upsetting, or post lots of medical / healthcare system information that isn’t relevant for me. And I found myself just reading bunch of stuff that’s just scary and doesn’t have any positive impact on me, it’s the opposite. But I think that the group which Katie posted seems to be close to a kind of proper support group I’m looking for!

That HBA guide is quite useful as a reminder of what to focus an and what to avoid. Thanks for sharing it.

I will try out Healthy Minds - sounds interesting. I just hope I will be able to make myself use it regularly :sweat_smile:

And yes, I do have the option to look for a new therapist, I am just not sure which type of therapy is best. I am currently exploring available therapists in my country. Though I have to admit that I feel tired in advance when I think about how I have to spend at least three sessions to explain my past and all the issues I have struggled with over the years to the new therapist before we even begin to deal with this problem. Maybe I am mistaken, but yeah, I “just” need to find a good reccomendation for a therapists that deals with grief, fear of illness and death.

Thank you again for your suport! All the best to you too :people_hugging::spouting_whale:

1 Like
9

Thank you for your warm welcome.
I am so glad to hear that you found comfort in this community, but also that CBT is working well for you. My current therapist is specialised in DBT, which is like a third wave of CBT, but I just feel like I’m talking to her about my issues like I would to a friend, or just use her for emotional dumping and there is nothing new I get from her. DBT was very helpful for me while learning to cope with emotional self regulation and distress tolerance, but somehow now it’s just not working. But I will definitely not give up. It’s great to hear from others that they found therapy that works.

I wish you all the best in your recovery and journey :four_leaf_clover:

1 Like
A welcome today 27 July 2025!
10

Not every therapist or type of therapist works well with all individuals, unfortunately. Some recommendations would be CBT, mindfulness based cognitive therapy, whilst I once tried to match clients with therapists I knew them both, so it made it a bit easier. There’s also a lot more types of therapy now than when I ruptured.

The one thing that I think will never change is that therapy has to fit like a good shoe, room to wiggle your toes and supportive all at the same time, not a pair of heavy steeled toe boots, nor those high heels with spikes. Once you’ve found a supportive therapist then you have to do a lot of work throughout the week until your next appointment. Therapists I recommended folks to could think outside the box, often gave homework assignments so as to encourage the client to take back most often they worked well together. They taught skills to their clients nd engaged them to practice those skills. I’m not a fan of talk therapy that teaches nothing to their clients say like when one is having a panic attack because of a trigger. Clients need to know what to do when a trigger comes along their way. But in the end it really matters how much effort one is willing to put in for themselves. I’m rambling again, I need to stop. I wish you all the best in finding a type and a therapist that can help you gain the skills you need, we always called them tools and tried to add enough so the tool bag became a tool chest. Relaxation breathing was always the base that I started my clients on first thing.

3 Likes
11

This forum, bafsupport.org, has been one of the best therapeutic devices that I have found.
(And I have had a TON of psychotherapy, so I know what therapy is . .. )

I wish I could say that one or two of the many psychotherapists I have been to helped me with my anxiety or depression around my aneurysm diagnosis or surgery. But I can’t say that they did.. It’s just out of their psychotherapists purview . In fact, I had one therapist abandon me the week before my surgery. It was his retirement time, but he had said he would be available for post-retirement sessions, but he wasn’t. (He had been an excellent therapist otherwise, for 10 years. But I just don’t think he understood my pre-surgery anxiety, or that my family was not really their for me.)

For me the best therapies post-surgery have been:

  • Trying to understand the cause of my aneurysm. If I had any family history of it or if it was congenital. In my case I believe it was due to head trauma. This helps me because I have no plans to traumatize my head again.
    – I have also had thoughts about paying for an MRI out of pocket, which is what caught the aneurysm. I see that there are doctors and clinics who will do this now.

  • Focusing on brain and physical health. As mentioned in other posts, I got the right kind of glasses (blue blocking), to avoid headaches. I have also traveled to Florida in winter to get out of the Seattle gloom and will do that again this year. I also focus on the people who where there for me during my aneurysm and I have kind of drifted away from the people who were not there for me.

  • Understand the causes of depression and psychological changes. A big reason I was depressed was that the blood thinners sapped my energy. It took me a couple of years to recover from them, and also from the steroids they put me on for 10 days. I wasn’t eating right because of these two things. In my case, I also believe my digestive system changed somewhat. (I can digest things better now). The low-energy from the blood thinners made me feel like an old man.

  • Trying to live the best life I can & process a near-death experience. I think this is important. I will be 65 this year (62 when surgery happened). The surgery and aneurysm experience made me realize that any of us could go at any moment, and, at best, I’ve got 20 productive years left. The experience made me think about how I want to spend those years, and pursue goals with a renewed focus. It made me ask myself what I want to accomplish in the time I have left. (Because when I went into the surgery, I wasn’t really sure I would come out. You don’t just “get over” that feeling.). So I think that acknowledging that an aneurysm diagnosis is an a near death experience is important. And it’s OK to have some changes come out of that. (It’s like the 5 stages of grief. It’s an encounter with your own mortality and you don’t just “get over it.”) The literature on NDE’s might be of help here. I was fortunate to be familiar with some of this literature, and also have a very deep spirituality. There IS someplace nice we go when we die, I think, but it’s important to make the most of the time we have on earth too.

  • My self-care so far has been to try to recover from the extra-strong blood thinners they gave me for 6 months, and also try to recover from some Covid-induced health issues, and also just check in with this forum once in a while.

  • There ARE brain injury support groups . There are not that many groups specifically for aneurysm survivors but there ARE a lot of groups for TBI (traumatic brain injury). See here: TBI - You’re In The Right Place For Help - Plasticity® Brain Centers.
    I attended one online meeting for one such group and it DID help a lot. It helped to actually hear that there are others suffering with post-op symptoms such as mine, and also that I was not in nearly as bad shape as many, many other people. The group in Seattle I attended was:
    Explorations Consulting
    206-547-2526
    janet@explorationsconsulting.com
    www.explorationsconsulting.com

  • After hearing some other stories (and I do think hearing – in person – adds something over and above just reading about it – it somehow mostly encouraged me to go and live my life as best I could. I was extremely lucky not to be as bad off as other members of the group and I kind of owed it to them (and to God, who for some reason spared me by catching my aneurysm before it burst) to live as best I could.

  • I also did read a lot about Neuroplasticity and about Traumatic Brain Injury and concussion. See here: Amazon.com : traumatic brain injury books. Whether you had endovascular treatment or they had to take parts of your skull off – the brain generally doesn’t like being poked or prodded. It is not recognized enough that aneurysm patients basically have the same symptoms as concussion and TBI patients and that we can draw on all those resources. And we should!

After reading these books, I DO think the brain has some ways of repairing itself and finding new pathways. The TBI groups, my spiritual experiences and other things just told me that I am extremely lucky to be as functional as I am, and I have tried to go back to pursue the things that I feel God spared me for, that He first put me on earth to accomplish, as best I can. My personal spirituality is that I feel they are His goals, not mine so much. I am lucky enough to feel connected to a higher purpose. To me, the important point has been to focus on that spiritual purpose, which is largely about trying to help the next person, the next generation, so that they don’t have to experience exactly the same kinds of pain and trauma I experienced.

(BTW, I am not so much “Christian” as a deep follower of Carl Jung. Not sure if that helps.)

5 Likes
12

Just to let you know there is in fact a psychologist down in Texas who’s been studying brain trauma for decades following his ever growing group of subjects. A week or two before I ruptured we had some training on his work. When I was in college the belief was that a person could recover from brain trauma if it occurred before age five. This Dr, I’ve forgotten his name but I might have it somewhere, having followed children and young adults into their 40-60 year range has found that no matter the age, we still can recover from brain traumas, it just takes time. When my wonderful Neurosurgeon told me around the second year my brain had recovered all it was going to I told her she was wrong and strongly suggested she look up his work.:joy: I did call Christie, the supervisor who was sent to do his training and ask for his contact information so I was able to send an email for giving me hope.

2 Likes
13

Welcome to the group. My 4mm annie was discovered 2 1/2 years ago, and I am doing watch & wait. This group has been a great resource for support, tips and referrals.

I am 68 years old so my situation is different than yours. I don’t have any “fear” about this, so I don’t think much about it. From this group and medical research, I have learned about symptoms to watch out for. I wear a medical bracelet with my diagnosis so medical personnel know what is going on. My Will and Medical Directive were completed many years ago, so I feel prepared for whatever may happen, and my family has been informed.

@FinWhaleFan has posted many useful links that I have looked into. Many other members (@Moltroub :smiley: ) have also posted useful information.

I hope that you are successful in finding all the help you need.

4 Likes
14

Thank you for the Excellent reminder to control what we can like our wills and medical directives, so many people forget to do it or perhaps like my friend’s adult daughter and her husband refuse to even discuss it. I think there’s some fear. But I was taught to face my fears, not ignore them at a very young age. Do t forget it’s important that we update them every few years, I forget what our elder attorney suggested so I might need to call her.

1 Like
15

So I didn’t know I had an aneurysm. And I have said multiple times to multiple people that if you told me even a day before the rupture I wouldn’t have believed it as I felt I was fine up until that morning.

That said, now that I know about it I get nervous about the very fact that things can change in an instant. As for therapy, my mental dr is who I see the most. Before I got hooked up with him I went to a different one that I didn’t agree with everything he said but I knew I needed to talk to someone. And I thought I had to keep going. But he said something to me on my last appointment like ‘are you just here because you think I can help you get disability?’ He also had said other things that I didn’t agree with.

When I called my nurse and told her what happened and that I wanted to find a new mental dr she said I have never heard anyone complain about this dr before. So evidently I was the first. Ha. My point is that if you don’t agree with one try another. And keep trying to find another. Eventually you’ll find what you need.

I had asked for weeks about my angiogram yesterday, I asked drs and nurses I saw and talked to in phone if it was going through my wrist or groin and no one could give me an answer. I was convinced they knew the answer and they were told not to tell me because of my anxiety and depression disorders.

Ended up they tried to go through wrist but was unsuccessful and ended up through the groin. What I found out after three of these is that the wrist is more painful even though the groin is painful too but the restrictions after are worse for the groin. But now I have a puncture in both wrist and groin and have restrictions from both for my recovery