Best friend recently diagnosed with brain aneurysm

Support
1

Hello all. I’m a new member here. My best friend of over 20 years has recently been diagnosed with a brain aneurysm. He went to the ER Monday evening experiencing high blood pressure, vertigo, some vision issues, etc. while there having tests done they performed a CT which found the aneurysm and he was referred for neurology. Unfortunately the ER physician didn’t really tell him much useful information in terms of where it’s located, size, etc. He still has not heard back from neurology, he will be calling this Monday morning and hopefully be seen next week.

Problem is since his ER visit he is still experiencing vertigo and a constant headache. He is feeling ok otherwise, alert, decent mood despite the recent diagnosis. I’m concerned of whether it’s starting to leak, before an actual rupture. Has anyone experienced such a thing, what were your symptoms?

I’m trying my best to stay calm and try to be as supportive as I can, I know how hard this is on him and his family. I, myself, am struggling with it. Especially since we don’t even know the whole scope of it yet. I happened to find this forum on my extensive Google searches after I found out so I knew what to look for in an emergency. I have found reading the success stories comforting. Any and all advice would be greatly appreciated, this is a whole new territory for me.

3 Likes
2

Welcome to the group! You are a very good friend supporting your friend, kudos to you! Make sure someone hangs around with him. Not all of us get the thunderclap headache as I’ve learned from members here. I did, but I didn’t have the vomiting, my legs went wobbly and I couldn’t grip well. I did pass out and the headache was beyond horrible.

If he has a portal with his ER, he might be able to see what the radiologist findings are that can give him a bit of insight.

We have many, many members who have incidental finds. I found this article A comprehensive assessment of self-reported symptoms among patients harboring an unruptured intracranial aneurysm - PubMed.

Remember when you go searching the internet, we are a very small group compared to the general population so you won’t find huge numbers used as a norm. Also stay within the last five years or so has medical science has grown leaps and bounds just since I ruptured 11 years ago!

More importantly they’ve found his aneurysm and the CT showed no signs of bleeding I presume. We do have members who have had slow leaks and I hope they share their stories with you. Please come back and let us know what his doc says. We are here for the both of you!

1 Like
3

Thank you for the response! I’m so sorry you had to experience a rupture but it seems to have you made a great recovery!

He luckily isn’t alone much, he is fortunate to work from home, he owns his own game store and it is right on his property. His wife also works from home 90 percent of the time, so it is rare for him to be by himself. I’m thankful that he usually has people around. I try to go out when I can but I live 40 mins away and have a full time job at a very busy veterinary clinic.

He does have the portal but for some reason he has to sign something at his PCP in order to get access to the records, which is odd. It was the first thing I asked about when all this went down. I imagine if the was evidence of a leak at the time he likely wouldn’t have been sent home that night, I imagine they would have transferred on the spot. The neurology department they had the referral sent to is at a different hospital about an hour away (it’s a superior hospital anyways, which is good.)

I am hoping he gets seen this week. The sooner he gets on a treatment plan the better.

2 Likes
4

I’m a work in progress, but thanks for that! I’m glad to read he’s hardly alone. I also know how busy Veterinarian offices can be and some days are emotionally draining. We have a very close and long relationship with our Vet, she had to go from 5 days to 4 due to exhaustion of everyone working. They still put in 12 hr + work days I think people don’t get it they’re not like an office, y’all still have stuff to do when the door gets locked for the day.

I was flown to a larger hospital for my brain surgery which is about an hour away. Can’t drive in a big city unless conditions are perfect so BH has to drive me there.

He may have to sign the papers to get his passcode from his PCP, which is when one signs a lot of paperwork. You might want to let him know to start keeping his own records as well. I learned that here from members and it’s been extremely beneficial.

1 Like
5

Hi Cassandra / @Ch_09 !

I just wanted to echo @Moltroub’s warm welcome to our extended family. Certainly not a group anyone chooses to whom to belong, but a strong, supportive family nonetheless!

I am also part of the rupture club, and I have learned from the group that there is definitely some blessings to that, as I did not have the anxiety of those in the “wait and watch” club.

One thing that I was encouraged to start through my recovery is mindfulness/meditation, which also includes breathing practices. According to my wearable, it does tend to lower by blood pressure by a few beats, so if you have not tried it, it might be helpful for both you and your best friend.

Of course, there are a ton of them out there so if you don’t like one, try another to find one that suits you! For meditation, I use the “Healthy Minds” app (free) because I love the integration of meditation and neuroscience lessons (forgive me, but I have become obsessed with all things “neuro,” “brain,” or “mind,” post-rupture! :grin:).

For breathing techniques, my favorite is called “box breathing,” and I have heard rumors that even Navy SEALS use it, so if it works for them it works for me! Mostly it is my favorite as it is easy to remember, it is 4 stages, like 4 sides of a box. Breath in for a count of five, hold for a count of five, breathe out for a count of five, hold for a count of five. Repeat as necessary!

I just want to also echo Moltroub, and cheer you on as being such a kind, supportive BFF! Many of us who have experienced a brain injury have had a dramatic decrease in our social circle, so please take some time for yourself through all of this!

Please let us know what else we can do to help you! Now off to sneak in some meditation myself. :grinning:

Fin Whale Fan :whale2:

6

Thank you so much for your kind response! Those meditation tips are definitely helpful and I will be sure to pass them on. He’s fairly open to trying stuff like that :blush: still in the waiting game to hear from the neurologist/neurosurgeon, his referral finally got down there yesterday and the Dr was reviewing his case, so fingers crossed for some positive feedback!

2 Likes
7

I did not know I had an aneurysm. Three years ago it ruptured. I experienced the worst headache of my life. When it passed and I vomited I slept for about three days. I felt better when I finally got up. I went for a walk with my dog and collapsed. Got to the doctor. MRIs, Cat scans. They said I need a craniotomy to fix the hemorage. Flew to Indianapolis on a helicopter transport to the hospital. My surgeon was brilliant and fixed the problem.

This all sounds very scary and it was but I survived. Much rehabilitation therapy after the event but today I am normal. Can walk, talk, and joke about the helicopter ride (they are very noisy and smelly)

The headache your friend has worries me. The doctors need to step it up and fix the problem. If it hasn’t ruptured there are other options besides craniotomies.

1 Like
8

Thank you for your message. I am sorry you had to endure that, must have been terrifying. But I am glad to hear you’ve recovered well, that gives me hope.

I agree that the Drs are taking their sweet time it seems. His referral finally got to the neurologist/neurosurgeon yesterday and he is reviewing his case. No word from that office yet. His PCP called to check in to see if he had heard from the neuro doc yet and he had not, so they are going to be touching base too, trying to get the ball rolling. I am hoping for some positive feedback!

1 Like
9

I got an update today that he finally heard back from the neuro office and they are seeing him on Dec 20th. And he also has an appointment with his PCP next week as like a consult for the neuro appointment. I’m glad he’s finally getting some movement on this.

Sadly last week just after I found out about his aneurysm, I also found out that one of my aunts suffered a massive brain bleed after a collapse and today she is being pulled off life support. :cry:. I unfortunately couldn’t make it out to her as she is in North Carolina and I’m in Maine. I feel sad that I couldn’t be there for her and my two cousins.

It’s been a roller coaster of emotions the past couple weeks. I appreciate this forum and being able to talk things out. The stories and info have been super helpful.

2 Likes
10

That is dreadful news about your aunt!

Lots of love from me,

Richard

1 Like
11

Welcome! Thank you so much for sharing your story it means a lot to all of us, it’s how we learn isn’t it?

12

We live in NC and our families do not. It can be very difficult to not get to them in a time of need. Just keep communicating with your cousins, let them know you’re there to talk anytime they need. When one of my favorite Uncle’s passed away, I couldn’t navigate airports, and hotels as it was right after my 3rd procedure to stabilize my aneurysm. His eldest son wasn’t nice about it and tried to guilt me telling me the cousins from Ohio were coming. He said it was payback for them for not coming to my Mom’s funeral, I really didn’t think about them coming. It’s a couple hour drive for the cousins in Ohio to where he lived in Kentucky, seven and some change for us. I can’t drive that far. I definitely can’t drive in big cities for the most part. I told him BH couldn’t take off work in the middle of the week and his sister should have done the funeral on Saturday. A couple years later we were texting each other and he apologized for everything he said. To beat it all, he is a licensed psychologist. I told him he needed to take some CEUs in empathy.:rofl:

2 Likes
13

I am happy to hear your news, not happy about the aneurysm. If your friend develops a massive headache, the worst headache of his life, he should go to the ER immediately. I did not --thought it was food poisoning. (Hot day–had been out to eat) I can’t begin to describe the headache. It lasted for about 15 minutes and I thought I was going to die. Many people describe the headache as the worst headache of their lives. I’ve had headaches all my life but nothing like that.
I am so sorry about your aunt. Frankly, they thought I would die but I wasn’t put on life support so her hemmoragic stroke must have done massive damage.

1 Like
14

I know the feeling, I’m 11 years in after unruptured left MCA clipping.

I collapsed at work was taken to my local general hospital where they thought it was my heart it was not, two months later had a MRI that’s when they found it the Annie.

A further month or so still had not heard anything as to what they were going to do, turned out that it was a budget financial issue at my local GP practice !! on hearing this I rang Oxford neurology hospital and within a week I had the operation.

Long story short unfortunately I had to kick some doors in to get answers.

Not all doctors and hospitals are bad it was just my experience at the time

1 Like
15

Thanks for sharing your story. It’s frustrating to say the least how long this whole process has taken for my friend. He has one of his appointments this week and I am hoping they can shed more light on the situation. Still don’t know anything regarding it, size, location, etc. fingers crossed he gets some answers!

1 Like
16

My friend went to see his PCP on Wednesday to help fill in some of the gaps at what happened at the ER, since the ER basically sent him out the door. :person_facepalming: Anyways his aneurysm is apparently small, 2mm on the right side. Per his Dr he almost didn’t see it in the imaging. I feel a little bit relieved knowing it’s on the small side but I’m still anxious to see what the neuro dr will say when he sees him this coming week. We met up after his appointment to do some Christmas shopping and have lunch. He seemed a lot less anxious and in a relatively good mood, which was nice to see. Here’s hoping the neuro appointment will also go well :crossed_fingers:.

I can’t tell you how much finding this group page has helped me. I appreciate the feedback and being able to read about others’ stories. It’s been comforting to say the least.

1 Like
17

Thanks so much for the update, fingers crossed he’ll get good news from his Neuro doc. Don’t be surprised if he’s put on the watch list and has to be imaged again in 6 months.

18

It’s been a minute since I’ve been on here… crazy with holidays and such. But you are right, as that is exactly what happened at his neuro appointment. Recheck in 6 months and if no change then yearly checkups. It’s helped him relax a bit now having more information and what to expect moving forward. He’s taking it as a sign to be more healthy in general.

1 Like
19

That’s good news, in fact as odd as it may sound to some, I think it’s great news! We have many members who may believe that they’re best to get repaired before it ruptures. Whilst I agree none of us want a rupture and I certainly don’t want another - I’m pretty much done with hospitals🤣. There’s also the same chance an aneurysm won’t grow or do any harm, I can’t begin to count how many past members have had an incidental find and their surgeons put them on the watch list and they’ve never had to undergo a procedure. Either procedure has its own set of serious risks and we should never forget that.

I wish all the blessings and happiness to him and his as well as you and yours this New Year!