New here and very scared

Hello. I am brand new to this community and very scared. My mother passed away in 2019 from an Aneurysm. Just last month I went to a new Dr who told me to get an MRA. I did, and they found a 2.5mm aneurysm. I googled of course and while its seems small, I am scared. The neurology Dr I am to see is in mid July. A month away but his office says more serious cases are taken first, I hope this is a good sign. Any words of advice or hope are appreciated. Is watchful waiting terrible? Am I lucky to know I have this? Thanks again!

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Hi @Juluzi and welcome!

Also new here (about 2 weeks ago we found my aneurysm on a CTA - ER visit for headache with vision changes). Also scared (but it comes and goes in waves).

First, I am so sorry to hear about your mom. The BAF has some pretty helpful webinars for/by family members. In fact, ALL their webinars are amazing. I’m going through them at a rate of about 2/day on the BAF Youtube channel because they are great. Second, I am so sorry to hear about your reason for joining - ie, your aneurysm.

Third, I’m glad you’re seeing a neurology doc and relatively soon! Where are you located and where are you following up for your care? Lots of folks on here will get multiple medical opinions before picking a care team and deciding upon a course of action. That route is available to you too! Some of the top institutions will do a virtual review of your records and get back to you with their recommendations. Barrow (AZ) and BIDMC (MA) are just two that do this - if you want their info holler and I’ll drop it in a reply.

Watchful waiting is weird, there’s no doubt about that. You’ll cycle through so many different emotions about what’s happening to you (sometimes it changes minute by minute) but that is *normal.

Finding something in your brain before it ruptures is crazy, and we are definitely the lucky few to get a heads up on our uninvited guest before it bleeds. There are different perspectives on that of course, but that’s the way I choose look at it.

So I named my aneurysm, which is helping. Mine is Pazuzu, and he is 4mm by 3mm somewhere mucking up the works in my right carotid artery (cavernous/clinoid). I am active here, which is helping. I am asking lots of questions I mean LOTS of questions, which is helping. I am doing lots of reading, which sometimes helps and sometimes scares me sh*tless. But I would say overall it is helping, because it’s enabling me to be informed and educated about what’s happening to me, and thus an active partner in my care.

Based on which hospital/neuro you are seeing and where you’re located you may be able to find a physical/F2F support group. I’m gonna do that next week (first meeting).

My experience on this community is that we are here for each other. You’re NOT alone in this.

Stick and stay here and ask/share away. Happy to meet you.

J

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@meaniffer thank you for writing to me. You have no idea, it means the world to me. Made me smile on days where I go from smiling to being scared in a second. I too have been reading and like you it’s helpful and scary all at once. I will check out the YouTube channel, this is great information. I am located in the Philadelphia area. I would love more details about getting a web meeting with one of the locations you mentioned (MA is closest of course). This too is helpful and giving me hope. My Annie (which I now feel the need to name) is located in my right carotid artery on the paraclinoid segment. Unsure really what that means till I see a Dr. Have you seen anyone formally yet?
Thank you as well for the kind words regarding my mother.
I hate to meet under these circumstances but happy to be supported and want to return the favor as well. Please keep me posted on you and how you are coping. I go from being releived I know and can tackle it to being scared. Then I walk away and breath and I am okay again. Keep in touch and please share the information that you have. Thanks again and stay strong! We got this.

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Oh @Juluzi we are almost aneurysm twins! CUTE! :laughing:

I have a study saved around here somewhere that seems to indicate younger women are particularly prone to developing unruptured aneurysms in this area (cavernous → transitional/paraclinoid → clinoid carotid). Will dig up…

You are definitely not far, I’m in Baltimore-DC. Lemme drop some stuff for you first, then I’ll give you my update - yes I’ve seen 2 docs and done 2 virtual consults/reviews now, with a deeper dive on my final one next week (total of 4).

If you don’t have multiple CDs with your images + findings, go back to where you got the imaging done and get them, as almost all of these programs will need one UPS/d etc. to them. Some also ask you to fax materials, and some contacts have emails, so you have to navigate how to get them the findings for review one by one, which is tedious but yields results.

I have manilla folders for each doc and file them in a nifty flexible binder.

Barrow Neurological Institute: Get a Second Opinion Program
Cost: $100 (self pay/out of pocket)
Turnaround Time: 7-10 days except Nov/Dec
Notes: Can’t vouch for this one as I haven’t personally used it (yet). Looks easy peasy with lots of online info and process. Decided I wouldn’t head to Phoenix in the summer if I could help it :).

Beth Israel Deaconess Medical Center (BIDMC Harvard) Brain Aneurysm Institute: Neuro Conference Review
Cost: $500 (self pay/out of pocket as ‘review fee’ via mailed check only), call Dede first to discuss and get mail-to address for the check. Or I can give it to you.
Turnaround Time: 1-2 weeks - conference is every Thursday and they’ll review 20-30 patients each go - if you’re an ‘optional’ second opinion review patient you may get bumped out a week or so based on emergent cases.
Notes: After they review, Dr. Ogilvy will call you personally with his recommendations.

Method: After being referred to the US News and World Report list, I visited websites for a bunch of the hospitals listed and creeped on, errr, did research on, the neurosurgeons there. I looked for YouTube and other conference videos, research publications, etc. I watched hours of webcasts and read hundreds of pages of research. And then went with gut feel to pick my top 3: Hopkins, BIDMC, MUSC. All have a strong presence/history of support and involvement with BAF, which is important to me.

Here’s who I’ve seen so far/feedback:

  1. MEDSTAR Washington Hospital Center Neuroscience Center. Dr. Daniel Felbaum. Referred here because my initial ER visit was at a MEDSTAR hospital and imaging (dry CT head, CTA w/contrast head and neck) was done at MEDSTAR Montgomery Medical Center so they kept me in network initially for followup. They identified my aneurysm as “right cavernous/clinoid ICA measuring 0.4 x 0.3 cm directed medially.”
    Feedback: Most conservative approach out of 4 I’ve spoken with. Did not recommend any intervention (watch and wait only) and hesitant to go to angio, recommended MRA. IF intervention would go flow diverter (nylenol material mentioned in my notes but I couldn’t find research on this, radial/wrist approach, ICU a couple nights, blood thinner and aspirin ‘for life after’). Didn’t feel great about this one - comments seemed to contradict recent research findings (these don’t grow, they don’t rupture, this is too small to operate - would have to be quadruple that size) and that put me off. Not choosing as care team.

  2. MUSC. Charleston, SC. Morgan, Nurse of Dr. Alejandro Spiotta. Do not have a virtual second opinion because they will not be able to see you unless you are physically in state and establish care with a chart etc. (state regs). But you can call Morgan directly.
    Feedback: Most aggressive approach out of 4 I’ve spoken with. Recommend elective/compassionate intervention (flow diverter, MEDSTAR Pipeline, radial/wrist approach if possible, femoral if not, 1 day neuro ICU then home). “Are you type A?” (BIG yes). “Why not treat?” Talked through doing intervention while I’m young and otherwise healthy. Call with Morgan was amazing and I felt heard/seen - they are a high volume super experienced center and pay particular attention to aneurysms in family history and treat a ton of multigenerational patient cohorts. They regularly treat younger patients and smaller aneurysms and have a very low complication rate. Morgan told me to check with my insurance for out of state coverage. Process would be referral from primary care physician, seen in person in clinic on a Monday, then Dr. Spiotta does angiogram on the next day (Tuesday). Travel budget required to treat and 1-2 week stay you can cancel at hotel or Airbnb nearby recommended, even though they say you can fly home the next day.
    Phone: 843-792-1950
    Fax: 843-792-1705

  3. Johns Hopkins Hospital Aneurysm Center: Dr. Fernando Gonzalez.
    Feedback: Middle of the road approach. Saw him in person in neurosurgery clinic at Hopkins Outpatient on Thursday. Mom and husband joined. Super professional. Calm. Steady. Asked a lot of questions about my vision changes the week before/day of the ER visit. Really dug in here. Asked a lot of questions about my TIA at 37, and requested I forward records from Stanford. Says his recommendation hinges on location of aneurysm - if cavernous, watch and wait. If transitional/paraclinoid or clinoid, “treat because you are so young.” From after visit summary in my Hopkins MyChart seems like he may think the vision change is signifcant/symptomatic may drive intervention even though he shared they don’t usually impact vision at this size. Next step is angio and he wants me to have that done before June 27th. Gulp. He also noted that if my aneurysm was NOT there when I had the TIA in 2017 that would be intervention because “they aren’t supposed to grow that fast.” I felt heard. He’s competent x10. He thought it was funny I’d already looked up the Medtronic Pipeline stent and read the data sheets, then looked up where their factory is located. Just that nerdy (manufacturing engineer by trade). I felt safe during the appointment, like someone is helping me make the right decision here based on best clinical knowledge and MY specific, personal clinical picture (only one of the docs to go this deep on my personal clinical picture although I haven’t met MUSC or BIDMC in person so I can’t say if this is a differentiator until after I meet them virtually or in person). Frontrunner for choice of care team right now, also because they are local (about 1 hour from us) which makes things easier for my family. And because I felt safe. I can’t describe it better than that.

  4. BIDMC Brain Aneurysm Institute. Dede, NP/cofounder of BAF with Dr. Christoper Ogilvy.
    Feedback: Middle of the road approach. Spoke with Dede today and had a great conversation. She knows of Dr. Gonzalez at Hopkins (they have worked together for BAF initiatives etc) and speaks highly of him. She says BIDMC’s approach will likely align with Dr. Gonzalez’ approach - ie get angio, if cavernous watch and wait, if anything else intervention (haven’t talked about type of intervention that would be recommended yet as Dr. Ogilvy will review my records in conference next Thursday. It was scheduled for today but bumped because they had 26 cases). Travel budget required to treat and 1-2 week stay you can cancel at hotel or Airbnb nearby recommended, even though they say you can fly home the next day.
    PHONE: 617-632-9940
    FAX: 617-632-8125

My family is terrified and there’s some serious medical experience there - husband is a medic/park ranger. Mom is a retired RN. Mom in law is a retired NP. I’ve asked mom, dad, sister to get screened. Universally, 100% of my family members say if this happened to them they would choose treatment. That’s something to think about for sure. Guess they want me to stick around. Working on it.

Not gonna lie - the angio scares me more than the embolization with stent for some reason - maybe it’s the local vs. general anesthesia, and also because there’s the uncertainty of what they will find, and the low but real complication rate for angio themselves. Put me to sleep!!!

Do you have a medical alert bracelet or the cooler version, a RoadID? If not, consider getting one. Good investment.

J

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@meaniffer Thank you. You have provided me with so much excellent information. I have a lot to read and review while I go to the beach this weekend and try to relax through this. I didn’t realize you had a TIA in 2017 and I am so sorry. The level of detail you provided and your reaseach into this is quite amazing. You did all this work and the fact you are sharing with me is so appreciated. Don’t be scared of the angiogram- you will be great! I got you! Please keep me posted on all things you and I will do the same. Thank you again and again. We got this!

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Julie,

Yes, you are very lucky this was found, particularly when it is small. July may feel long but it will be here before you know it. In the aneurysm world 2.5mm is small, but you are still a priority albeit not an emergency. Take this time to learn as much as you can so you can make the most out of your appointment.
Questions…is that appointment with a neurologist or a neurosurgeon? Do they have your images already in hand or will you be taking them with you? Many GPs send you first to a neurologist who then decides if you need to see a neurosurgeon. But in the world of aneurysms, neurosurgeons and their patient decide on treatment. So if you are with a neurologist now, definitely keep that appointment but get an appointment with a neurosurgeon as well to keep things moving. If you are already wirh a neurosurgeon, great. Add another one. Someone who ruptures lands in an ER with no choices. Someone like you has options and control. Use them.

I was told MRAs can sometimes make aneurysms look larger than they actually are. I hope that’s your case and it ends up even smaller. They may or may not want further studies (CTA or Diagnostic angiogram) to further evaluate size and condition of your arteries. Location matters and that will also be considered, as well as your age, risk factors, etc. You will end up with recommendations based on your individual situation, which is why I’d get more than one opinion.

Philly is a great springboard…lots of great minds and institutions around you. Call anywhere you want, ask for who you want to see, or let their concierge guide you to a neurosurgeon. Upload your images and wait for a call (or pester them when they don’t; I had one place I dropped purely over poor follow up. Didn’t want to start with a lack of trust).

I have a treated but unresolved aneurysm,plus 2 that are treated amd gone. Watch and wait is doable, but it’s very personal. If you can’t, they will most often treat for you provided there are safe options. But don’t get ahead of yourself. You are at the very beginning and all will get clearer as you go forward.

If you need help finding where to go next, let me know. Also start a post for surgeons recommendations in the Philly or Tri state area depending on where you’re willing to travel. Virtual consults are common in the aneurysm world so you can often stay put untul further evaluation is done.

Keep asking questions here and among your medical practitioners. I’d have answered sooner but i had an angiogram this week so it’s been busy, and it sometimes takes a bit of time for folks to come on and catch up. But we are all here for you at all times. Ask, ask, ask. And BREATHE. Now while your mind is reeling is the time to manage your stress. I push 4 7 8 breathing techniques and youtube mindful meditating on anyone and everyone who will listen because it’s helped me a lot. Keep calm…you’ve got this.
Judi

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Hi Judi

First, thank you for your message. It made me breath alittle easier this morning. I am sorry for all you have been through and hope you are doing well. It’s hard to admit but I am starting to feel thankful that I know now that this aneurysm exist. I am sure my mother would have liked to have known the same and had options. I have options and can make a plan.

Due to your message, I looked up who I am seeing in July and it is a Nueroradiologist, thank you for pointing this out. Looks like he is more of an expert at interpreting images.

As far as second opinions, do I just call these places directly? Do I need referrals? I looked into doctors at UPenn and may start there but if you have any recommendations, I welcome suggestions.

Now I will turn to these YouTube videos on relaxation that you suggest. I am also heading to the beach with my family this weekend to help me relax. I have wonderful family support and for that I am grateful.

Appreciate you for reaching out to me and taking time to reply. I wish you all the best on your journey as well. Please do keep in touch. All the best, Julie

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Interventional radiologists treat aneurysms as well, and there are some great ones out there. Hear him out. Unless you have restrictions based on insurance, you can call anywhere. Look up the institution, look for the neuroscienes or neurosurgery department, and pick up the phone as if you’re POTUS!

Later today I’ll send you is a link to a US News with a list of top institutions that is sortable by location. But there are great surgeons everywhere too. Many institutions that don’t make this list are saving lives daily. You’ll find the fit for you.

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@Juluzi you bet!

Doing research helps me feel more relaxed as it’s something concrete I can ^do to have a feeling of choice and control :).

I can be a lot though :woman_facepalming:t2: so if I overwhelm with the data dump just tell me to put that sh*t on pause :joy:.

Have a wonderful time at the beach with the fam! Soak up some sun for me :heart:.

J

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Hi Julie,

Here you go. You can use this link and sort the list as you see fit.

https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery

I don’t consider the be all and end all resource. There are other resources, and personal recommendations are great. As I said above there are really great neurosurgeons at many institutions. But if you do want someone experienced, or working under someone experienced, larger institutions have more patients and more repetition. Someone young and sharp is awesome, a little older and been around the block to deal with the unforeseen is good too. A superstar is nice but sometimes a competitive bunch of surgeons can bring out the best in everyone. You may not know which are which at the outset, but in this field you have a very dedicated bunch of overachievers. They tend to be careful and meticulous. You’re going to find someone that makes you say, he/she’s got this, and you will move forward with treatment or watch and wait with confidence (and a little natural trepidation seeping in from time to time because we’re dealing with serious stuff).

Again, most important, you no longer have the unknown lurking in your brain. You have knowledge, power, and since it is small, time to react and respond with care and deliberation. Rupture patients never have that luxury, but you’ll find many on this site surviving and thriving and pulling us all through. Have a great time with your family…nothing beats the beach to sooth an anxious soul!

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Thank you again, Judy. You really have no idea the impact your words made on me. I know that I am fortunate that I have found this at this time. It’s just hard to see that from time to time. At this point without having spken to a doctor its very moment to moment with my emotions. Reading your words helps. I took action and have a consult late June with a neurologist. So I have two appointments now. Can I ask how you are? I do hope you are well, any issues with your surgeries? Many thanks again. I too hope you are surviving and thriving.

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Hi! You are not too much at all. You are the perfect amount. Your reseach has helped me so much! Please stay in contact and let’s keep each other posted on how we are doing. I believe we will be amazing!

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Can I say I love the way you guys are propping each other up!! It is exactly what this place is for!

In case it helps, I can tell you that I’m very vasovagal. I can faint just thinking about a pinguecula fgs. I have fainted just thinking about a pinguecula.

Regarding my first and second angiograms, since my consultant interventional radiologist understood my susceptibility to vasovagal syncope, he actually did just an MRI, agreed that the course of action would be a PHIL glue embolization with me and that actually he would put me under general for the exploratory angiogram and the embolization in the one sitting. So if it’s a big issue, just talk about it.

What I can tell you is that when it came to checking on the efficacy of the embolization a couple of months later he said to me, “I’m not going to be putting you under general by the way!” And I was semi cool with that and semi uncool with that. Honestly, it was fine.

I had a third angiogram a year later and, while I felt a little faint during that procedure, I’d say the main reason was that the doc was just acting pretty much silently. Doc no 1 was telling me what sensations to expect as the contrast messed with different areas of the brain “hot flush” or “twinkling lights”, “a bit of nausea” etc, whereas doc no 2 pretty much did the whole thing without explaining what might occur for a few seconds.

Much better to have a doc who talks to you, I feel.

Honestly, got through all of them fine and would happily do them again if the need arises.

There are risks of haemorrhagic or ischaemic stoke from an angiogram, so it is non-trivial and not to be sought more often than necessary but I had a good experience overall with my three. And if I can get through it, anyone can!

Hope this might help,

Richard

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That sure does help thank you Richard!

I’ve had twilight sedation but had a horrid experience with local for a hand surgery at Stanford, which is probably influencing my fear here.

Local just didn’t put me at ease - had to argue with anesthesiologist that I could still move (and feel my hand) - flicking her off with middle finger on my right hand (surgery was on right ring finger fixing a complex fracture that was missed after a riding accident) was what finally did it I’m sort of ashamed to say - and she shrugged and we finally went twilight for that one.

Remember nothing, woke happy with finger fixed.

For me, the anxiety related to not knowing/understanding what is happening is significant. Your feedback is great, I’ll ask the docs and care team to keep talking me through what’s happening, whether I remember it or not.

This group is so awesome :slight_smile:
J

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I had carpal tunnel release under general for the same reason you were jumpy about it.

On the day I saw the first CTR surgeon, we talked about me fainting and rolling away or feeling something during surgery and instinctively pulling away. He just looked me straight in the eye and said “We’re not doing this today!”

I was rescheduled for the procedure under general and even as I had starved the night before and the new consultant was doing the rounds, he said to me “I think we’re going to sort you out under local…” The conversation didn’t go well. I thought I was heading back in for the thing to be done under local, even after a fairly blunt conversation.

A few minutes later, the anaesthetist appeared in my cubicle and started talking about a general anaesthetic. I said “Oh, I thought I was being seen under local”.

“I think you persuaded the consultant that general was needed!”

I had my carpal tunnel release under general! However, general is dangerous, so much, much better to do anything under local that you can do under local. I think the fear of the unknown is the greatest thing. If we can talk you through what these things are – even down to the sensations that the contrast material invokes as it blots out the oxygen as it flows past different brain functions – then I’m sure you’ll know more, worry less about the unknown and get through nicely.

It’s great to talk.

Richard

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Julie, I’m going to spare you every detail… you have enough to worry about :joy:. I’m a bit complicated and it’s highly unlikely you need that right now. But I will say this - I’m here chatting with you so a lot more went right than wrong. And I’m endlessly optimistic. My worst was a multilobed aneurysm (an aneurysm, with an aneurysm, that had an aneurysm, true story :grinning:). One that blew in surgery (talk about right time, right place), and another on the other side with a daughter sac (again with an aneurysm that had an aneurysm - I dont mess around). Tortuosity added to the fun. I’m still here, so it’s ok to laugh at all that, and my family and I do that often. Don’t compare yourself to me…I’m a one of a kind wreck but I’ve got some great stories to tell. Def not the norm.

My last angiogram was a good one. I’ve FINALLY graduated to follow up MRAs, which is what most get after their angios when they aren’t trying to make the “most angiograms” Hall of Fame. I’m running a victory lap once I’ve rested up. If I never need another angiogram, life will be good. But even if i do need another, life will still be good because that means I’m around to have it done…but I’ll whimper a little (or a lot) on the way. And likely score a few gifts in sympathy, spend a little more $ on pampering, and get my picks of restaurants and movies for a decent amount of time. I hope none of my family are secret members here; I could be in trouble now.

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Thank you for sharing your story with me, Judy. I am sorry for all you have been through and hope your finally on the road to all good/healhty things. Your endness optimism is rubbing off on me at the beginning of my journey.
Because of you I made another appointment with a different doctor so that I will have two solid opinions/options to start with. Right now I’m at a beach. Breathing and feeling better each day that I know about this now and can proactively manage it. My mom would have wanted to know she had one if she had that chance. I need to remember that. Thank you for the reminder that while this is scary, this is not necessarily the end. It could just mean a new and different begining. I also need to pull a sympothy card and get some good things :stuck_out_tongue_winking_eye:. Take care of you and keep in touch. Your optimism is helping me so much.

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Hello,

Welcome to our group. I find this forum very informative. I understand you must be very frightened. My thoughts are you are lucky to find out early.
I found out about my ‘Annie’ as we call them when mine was about the same size as yours. I did not have to have surgery right away. It was nearly ten years before it reached a size to need surgery but I did have to take precautions. I got a scan to see if it was growing on a regular bases, avoided stress and went to ER if I got a bad headache. Once my Annie began to grow is when I had to have surgery. I hope this information helps and gives you a little comfort. If you have questions please feel free to reach out to me.
Jj

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Thank you so very much for you message. It is making me feel better and helping me to breath a little easier. Any advice on how to get throught the watching and waiting part? Thanks again! Means the world.

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HI…I had a 2.5mm aneurysm that ruptured. While I was working out! That was in 2012. Since that date, I get my yearly MRA. 2021 they found another 2.5mm; and because of my previous rupture I immediately had surgery to clip it. I think when there is family history or your own personal past history; you are or should be a priority. July is right around the corner. I will be thinking of you. I know “that” wait. Take care

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