Hello. My 26 year old daughter has just been diagnosed with a brain Aneurysm. She has been told there is a less than 1% chance of rupture in the next five years. A cerebral angiogram has been recommended and the risk of stroke from this mentioned. There is the possibility of coil/stent surgery which also holds risks of stroke etc. Her specialist is leaving all decisions in her hands. Such difficult decisions. I am wondering if you can lead me to any threads on this site specifically about younger people and unruptured aneurysms. Her first decision is whether to have the cerebral angiogram or take a wait and watch approach. I appreciate your help. Kind Regards Rachel
Welcome to BAFSupport, Rachel, and thanks for the message. We’re sorry to hear about your daughter’s diagnosis, but I know that there are many members here who may be able to put it into better perspective for you.
I hope you don’t mind that I’ve made your message into a public post so that we can get as many members as possible reaching out to you.
I am wondering if you can lead me to any threads on this site specifically about younger people and unruptured aneurysms.
The search engine here works really well. Click on the and try “unruptured” in the search field. When you visit old threads, remember that posting on one will send automatic notifications to the people who posted there. They will see what you said.
If you want to direct (private) message another member who you think might be able to help, click on their avatar (picture/initial, your avatar is R in a green circle). Then click “Message”, and send a private communication. (If this doesn’t work right away for you, it may need to be enabled by a mod, just let us know.)
I’ve also altered your subject line to attract the attention of as many of our 5K members as possible.
You’ve certainly come to the best place in cyberspace for information and social/emotional support! I hope you like it here. How about encouraging your daughter to join in as well?
All the best to you and your daughter! Please let us or your moderator, @Moltroub , know if there’s anything else we can do to help.
Seenie from Modsupport
PS Instructions for the finer points of using this site are found under “New User Instructions” (near top of window), and then scroll down a wee bit.
Hi Rachel, I had an unruptured aneurysm treated about a year ago at age 20. In my case it was definitely a treat as soon as possible type situation but if you have any questions about the procedure I had (pipeline stent) please message me.
Hi I’m sorry to hear about your daughter. Myself was diagnosed three years ago with four brain aneurysms and was told at that time they are all small to live my life and not worry. Well dec 25 2020 Three years later I had one bleed out. After being rushed into surgery they have coiled two out of my four. As they grew way fast due to stress I was told. I’m now two months since bleed and I fight through each day. Myself if I was offered to have my other two coiled I would jump all over it. As living through a bleed has changed my life so much. I don’t want to always be thinking I can bleed again. Here in Canada if you go in to have procedure done they say your out of hospital in three days and back to life in one to two weeks. Now having a bleed that changes all of that. I’ve been told there is only a 7% chance of a coiled anny to bleed. I suggest you talk to doctor and take into fact your daughters life style right now. Smoker working etc. She may have to change some ways. Try not to stress practice meditation etc. It’s hard but with support we all can do it. I go every six months for test to show if my other two are growing. My first one in July. I ask why can’t I have them coiled and why didn’t the when I was under already and doctor says to small. I still don’t understand that. I hope your daughter continues to get all the help and information she needs. This is a great sight to just talk about anything. Nothing is ever to small to talk about. All the best
Was this email meant specifically for me, Natalie, or should it have gone only to Rachael?
Or did everyone receive it?
Hi Rachel–I had an unruptured aneurysm diagnosed in 2011 at the age of 33. I received different opinions from several doctors. Some said wait and watch, some said take care of it because I was young and the chance of it rupturing over time continually goes up. After some thought, I decided to have the Pipeline Stent (which was fairly new at that time). I did well with the surgery, but had some complications a month or so later. I had severe head pain and they discovered what they thought were areas of stroke from the surgery. 8 years later and it was discovered through scans that they were not strokes, but brain lesions, which are still active and most likely the result of the surgery/medical device used. This is definitely not an easy decision. I personally have had many angiograms from 2011 to the present, and did not have any issues with that particular procedure. If anything, she might get some clarity from the results and have a better feeling as to which direction to go. I wish you all good fortune going forward and if you ever have any questions for me, please don’t hesitate to ask. --Rachel Stolz
I was diagnosed with an unruptured brain aneurysm at age 38. I am older than your daughter (I’m now 42) but was given similar advice from the doctors. I do have a family history of ruptured aneurysms so that was a huge factor for me. I’ve had 5 angios and all went very smoothly. My aneurysm was in a bad spot in my head so I had to have a craniotomy (which I did a year and a half ago) and I’m back to normal. My father had a ruptured aneurysm and had coils put in and he too is back to normal. We are both very lucky but I know the stress you’ve been presented with. I too am a mom and a daughter and my mother was petrified. My best advice is to LOVE your doctor. If you have any slight hesitation, get another opinion. I lived in California when I found out about my aneurysm and I didn’t feel great about any of my doctors. We moved to Georgia and I found a neurosurgeon that I knew would get the job done right and he did and I’m so grateful. Please feel free to reach out to me with any questions, I’m happy to help in any way I can. Good luck. Know that you and she are powerful, strong, amazing women that can get to the other side of this horrifying circumstance.
I was 26 when mine ruptured. That was in 97 and I think my age and health saved me. I was a fitness fanatic working out when it ruptured. I’ve since had 8 brain surgeries as a result.
Hi. I thought you might want to know that this sent to someone who is not Rachel, not a teenager, and I do not have enraptured aneurysms. I do hope you are able to connect with Rachel, I am certain the support will be valuable.
I had a ruptured aneurysm more than 20 years ago, I was 28. I had a CT and then an angiogram to confirm what the doctors suspected. I had the coils inserted endovascularly and I had little to no side effects from the procedure. At the time the coils were brand new but now widely used. I was fatigued and it took a long time to heal from the actual ruptured aneurysm. I have since had angiograms just about every 5 years. They are the best tool doctors have to know what is happening in the area of the aneurysm. Having the angiogram is a big decision but it might give her, the doctors and your family more answers to know what the best next steps are. One way I got through my aneurysm experience was having faith and trust in what my doctors were telling me. Waiting and watching with the knowledge of what an angiogram can show is my suggestion. I hope you all find the answers you need. Take care! All my best to your daughter and family.
I had a series of MRIs until it was suggested I have the angiogram since it was growing and the doctor wanted a better look. The angiogram showed the aneurysm a lot bigger than the MRI showed. This gave me more information to help me decide what I should do.
The angiograms I have had were tiring, but pretty simple. I have had 5 including follow ups after my coiling. Instead of deciding on the whole process, maybe take things one step at a time so it is not so overwhelming.
When I read all your messages, I feel deeply grateful and moved by your willingness to respond and share your experiences with me and for my daughter. Please understand, for now, if I do not reply to each message or if I take a while to respond. I feel and appreciate your support, care and consideration as a community through your sharing, value your wisdom and experience and, as someone who has also experienced life threatening illness, deeply honour those experiences. For now, I just wish you to know, I am reading everything, taking it into my mind, heart and spirit and with discernment and trust I will share the distillations with my beautiful daughter. With deep gratitude, Rachel
My post was directed to Rachel, but I invited everyone else in the community to join in. Only senior admins can do this trick, so don’t try this at home! (Hint: it’s the last, cryptic, line of the message.)
An all-member broadcast of a thread isn’t something we do very often, but in this case I knew there would be many members who would be able to identify with Rachel’s situation and questions. And just look at the generosity and kindness of the members who reached out to her !
Ben’s Friends people are The Best!
Rachel, everyone here understands that you aren’t going to be able to answer each post individually, especially with so many responses. What you can do, though, is click on the little heart outline at the bottom of posts which you particularly like.
That sends a tiny token of appreciation to the poster. And sometimes it’s the little things that mean so much.
I know that you now, as a member of this community, will reach out to others who need a kind word or a smile. That’s how things work here. It’s all about supporting each other.
All the best to you and your daughter. Now that you’ve felt the incredible support, be sure to reach out to others, even if its just clicking that little heart.
We’re glad you found us, Rachel.
Hi Sox, just curious about your recovery time after the stent procedure, primarily headaches. I’m 39 and I had a stent put in about 4 months ago and the headaches haven’t really diminished much as of yet. Hopefully you are 100% recovered and not dealing with any long term issues. Any information would be greatly appreciated.
Hi Julie, great to have you drop in again! Sorry for the confusion: I was inviting other members of the community (like you!) to read Rachel’s post, and perhaps to respond. We don’t do an all-member broadcast very often, so it’s understandable that you might have been a bit puzzled.
Now you know, though, that if you have any questions, they get answered personally on Ben’s Friends!
All the best to you!
PS Since you were last here, we have new site software. If you are wondering about how to get around this site, instructions can be found by clicking on “New User Help” near the top, and then scrolling down a bit.
Hey Sox! Glad you’re back. If anyone wants to message you they can do that easily by clicking on your avatar
and then on “Message”. That opens a PRIVATE message form.
I am now 10 months out of the pipeline procedure. The headaches for me were very bad and daily for the first month or so and then got better and occur maybe once a week. I occasionally get headaches now that feel similar to the month after the procedure but rarely. I just had my follow up angiogram a few weeks ago and the aneurysm is completely gone thankfully.
I am very thankful of my recovery as I feel better than I did before I even knew I had an aneurysm and I can attribute the headaches I was having to the aneurysm which I did not know I had at the time.
I really hope you begin to feel better and am glad you are ok. Here is pretty much the only info I can find on headaches after stenting: The Post-Pipeline Headache: New Headaches Following Flow Diversion for Intracranial Aneurysm
The paper notes that many patients, in particular younger ones, have headaches after the procedure but there is improvement over time.
Hope this helps,
I had an unruptured aneurysm about 4 years ago. I was 18 years old at the time. Coil surgery was performed. I am doing completely fine heath wise, with almost no special post surgical care. All the best to you and your daughter. You can reach out to me for more questions.