Newly diagnosed and scared

I am 29 years old and have been newly diagnosed (in the last 2 days) with a 4 mm aneurysm on my left internal carotid artery…and I am completely freaked out. I have a family history of aneurysms- my grandfather and one of my aunts had them along with one of my cousins. My aunt did not know about hers until they ruptured. My cousins was discovered after it was recommended screening for my dad’s side of the family and she had her clipped. I am going to see a neurosurgeon in a couple of weeks. I have not even been to the doctor yet and I am already a mess thinking about coiling vs clipping. I am so paranoid that I shouldn’t be doing anything beside sitting on my couch in a bubble. I have talked with my primary care doctor who ordered the MRA that saw the aneurysm and she said she spoke with the radiologist that read the report- it is very small and she is recommending me following with the neurosurgeon due to my family history. She said I don’t have to curtail any activites- like the gym- but I am just so paranoid. I feel like I am going to go crazy in the next few weeks while waiting for my appointment!! I have spoken to my cousin that went through this and she made me feel a bit better- but then I get thinking about it again and the panic sets in. I just need some words of encouragement from those that have been through this and some advice to help calm my nerves.

Hi Jodi -

I will write more when I have more time, but just wanted to say welcome and that i completely understand what you are going through. I have a similar situation - my own unruptured aneurysms, also w family history. I had coiling w/ stent 3 mos ago and feel great now.

You're not alone!

Jennifer

YOU ARE NOT ALONE!!! I am scared to death!!! I am 34 yrs. and found out by accident about my 3 mm anny two days before thanksgiving. I have been to 3 neurosurgeons for opinions. As far as I know my only options are monitor it or clip it. When I first found out about this thing I was panic stricken thinking I can’t live knowing there is a ticking time bomb in my head, I need it fixed. Since then I have been obsessed with researching everything. I was told that since my anny is small it is unlikely to rupture but since I’m young and healthy my chances of recovering from surgery are very good & I have a long life ahead of me. Two out of the 3 surgeons said they wanted to do an angiogram. I picked the surgeon I liked the best and my angiogram is this friday and I am so freaking scared! I am afraid of the dentist so this is going to be traumatic for me. I changed my mind about fixing this thing. I DO NOT want brain surgery!!! I am more afraid of a craniotomy than I am of having an aneurysm, nothing makes sense anymore. I don’t want to live with deficits. I like being me and I want to continue. Everyone is supportive in my decision to not have surgery except for my sister & a couple of friends. Nobody truly understands the terror you are going througn except for the people on this site. If you need to talk I will email you my #. Hang in there girl!! You’re going to get through this. I will pray for you.

I know what you mean about the craniotomy. I was doing some research myself (it feels like that is all I do anymore and then I just get more freaked out) and after reading about the procedure for the craniotomy, I was terrified (and I havent even been to the doctor yet!!!) My cousin that had an aneurysm had it clipped because she couldnt stand the idea of just watching it and wanted it gone. She has no regrets about her decision to have it clipped.

Nancy - when you say you were (are?) scheduled for angio this Friday, do you mean a diagnostic angio or do you mean an angio w/ coiling? I know what you're going through - fear beyond fear beyond fear....I'm here and like I just wrote above, am in the same situation but did have the coiling. So are you definitely not having it now?

jennifer

it’s a diagnostic angio. coiling is not an option supposedly because the anny has a wide neck. i am praying that it’s still just one small aneurysm that can be monitored. this angio was supposed to be 2 weeks ago but had to get rescheduled because of snow. we are supposedly getting another storm and if it gets cancelled again i am not going to reschedule it. i’m trying to be positive but it’s harder this week. thanks for being there for all of us that you reach out to :slight_smile: XO

Sorry - I did know those details but forgot (can I blame the aneurysms for bad memory?!?!?!)

If you can tolerate the anxiety, I think you should just grit your teeth and take some ativan and do the angio. From what I understand, angios that are diagnostic don't thread all the way into the head - they stop at the neck and shoot the dye from there. My follow up in 3mos will be that - and I was SOOOOOOO relieved to learn that they wouldn't be IN my brain again. I know that the cancellation and fear of another cancellation feels like just too much to tolerate, but I think in the long run you'll be very relieved to have had it done. Arm yourself with information - I'm terrified to get my f/u angiogram - so I'm not some brave person urging you on - I'm totally freaked about it - but, I gotta do what I gotta do, and I just have to stick it in that mental basket and know that I will be completely scared, but will completely do it anyway. If another storm is coming, can you get to a hotel near the hospital the day before? I think the waiting and waiting is the hardest and really plays mind games....

Keep posting! Jennifer

Jodi, welcome...and you are so blessed that you had a PCP who pursued the testing...

Likely, you are in good shape with the 4mm diagnosis...Yes, please do follow with your neuro who knows your family history...

My questions to you are 1) what symptoms prompted addressing it with the PCP?; or 2) did you pursue based on your family history?

Yours is small; tho hope you can address the location and size of your families'.

Mine was only 6mm and I had multiple leaks/ruptures before diagnosis...including the PCP non-referrals...i.e. I saw the PCP between two emergencies...and, it took the third emergency to secure diagonosis...

Please do NOT panic...I pray that you can/will feel blessed of its early diagnosis and when the treatment is appropriate... You are blessed to be able to ask your neuro who has your family history...

I pray you will find a way to think, understand, the benefits of early diagnosis before ruptures...and, know that we are all here with you in our prayers...

Pat

Nancy...you are blessed that you had an early diagnosis...which, in itself, reflects you have a great

PCP for referring you to appropriate treatment...You are blessed again, that you have/had, the opportunity to secure and compare treatment from several neurosurgeons to help you make your decisions...

If any help, a woman in the office next to me had had a craniotomy some decades earlier...and had much better results than I did in coiling....I did not even know she had had an aneurysm...It truly all relates to the quality of care.

My prayers are with you this Friday...and every day; and, am anxiously awaiting your follow up.

Blessings and prayers,

Pat

I had some visual disturbances that scared me, considering the family history. I was helping my friend move and I kind of lost my peripheral vision. My PCP thinks this was an occular migraine, unrelated but she insisted on the MRA because of the family history. The one thing that freaks me out is that this was actually my second MRA- my first one did not show anything. So did they miss it last time or does this mean it is growing? I am very grateful (even though it sucks) to know about this so I can monitor it…Just out of curiousity, when your was leaking, what symptoms did you have? I know everyone talks about the worse headache of their life when it ruptures but I haven’t heard much about when it leaks…

Hi Jodi,

When mine leaked ruptured, I had the worst ever headache, started to throw up. I know it is really difficult right now but the best thing you can do is be as positive as you can. Everything is going to be okay. There is alot of us on here that has been through the same thing as you. I have two that the Dr's are still watching. You have the right to be paranoid, but try your best to keep telling yourself, everything is going to be okay. We are here for you.

Take Care

Ken

This site has been a wonderful support system for me. It helps to talk with others (like your cousin) who have been or are going through the same thing as you. I remember when I first found out about my Annie, there was a lot of fear. I wouldn’t say the fear (or worry) ever goes away, but that with time I just have learned to live with it. Some days better than others. Hang in there this too shall pass, well get easier for ya. :wink: take care. Jenn H.

Hi Jodi,

I'm so sorry you're having to go through this. Of course you're scared...you're human. Allow yourself to be scared and work through it. Don't beat yourself up over being scared. You're not alone. All of us have had to go through the fear and uncertainty at some point. The saving grace is that you found it before it ruptured and I'm sure if your Dr.'s felt you were in imminent danger of a rupture, they would have sent you to the ER. Be thankful you have the "luxury" of investigating your options. There are SOOOo many people out there who are living their lives with annies. It's amazing what some people have gone through and what some people haven't gone through. Each story is different.

My cousin had her unruptured annie coiled and was back at work three days later. Mine was a rupture, so it was a longer hospital stay and recovery period, but I'm still here. Working, driving, got married last year and we're planning a trip to Scotland, God willing.

Rely on the BAF board & site for support and as you think of a question, write it down, and take that list of questions with you to the Dr. Don't assume your Dr. will tell you everything you need to know. You really have to ask and it helps to set your mind at ease when you don't have all of those lingering, unanswered questions floating around in your already troubled mind.

Hang in there and take care of yourself.

Heidi

Sweetie ....

It is very scary...but I found with mine....and those that ruptured...it is better to know...and have choices to what is the next step...that have a rupture and not know what is happening to you...

You have come to a great supportive site....we are here for you...keep us posted...and try (as hard as it is...) to live each day..."one day at a time"...until you need to make decisions along with your Doctor on what is right for you and your annie...Gotcha in my Thoughts...Hugs and Healing Thoughts coming your way...Colleen

Jodi,

I am so sorry for you to feel so freaked out; but can so understand it.

Did you have yours checked for family history, or were you having symptoms? You are blessed just being able to share with your cousin.

Because I am a survivor of leaks/ruptures, I am more than pleased for you to have this initial diagnosis, where you can become informed to help you make your best decision.

Take in a list of questions with lots of space to note the neuro's answers. Hopefully, your cousin, or another close family member / friend will go thru the initial meeting with you. That can help absorb the explanations...and, at least be there to hold your hand.

Prayers to you,

Pat

Hi I’m 34 years old, and I just had an almost 9mm coiled and stented in Oct. It sucked but it could always be worse right? You could’ve never known, and it ruptured and well we don’t need to go there. So you have to look at this like you are meant to be here for a reason. That’s what gets me through the day. When I’m getting so annoyed, or scared, or angry, I think that I might not have been here to see that new movie, or to buy those beautiful new heels, or to eat NYC pizza, and to go on the trip I have planned to Italy in June (whoooo)! There is a light that can shine through this confusion, and that would be that you have to grab life by the horns and yell “I’m here to stay” and screw the annie! Get the coiling done asap and move forward. We’re all doing it, and so can you!! It’s just a little hurdle in this little world called life. As my English mother says “keep calm and carry on”…

Thanks Alicia- your reply made me laugh!! Good words of advice!! :slight_smile: