New member looking for advice

General personal-stories
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Hi everyone,

I am new to this group – thank you for allowing me to join. I will share my story below, but since I learned about my aneurysm just a few weeks ago, I am hoping to receive some advice on how to navigate this all as gracefully as possible. Thank you!

I have a history of chronic migraines and get an MRI ~every 2 years. I did my routine MRI a few weeks ago and my neurologist added an MRA this time due to recent onset vision changes. The MRA showed an aneurysm on the right ICA right by my optic artery. I completed an Angiogram that showed the aneurysm is 4.8mm and very wide necked. It also showed a cavernous aneurysm (2.6mm) lower on the artery. My neurosurgeon recommended surgery for the larger aneurysm due to my age (in my 20s) and the aneurysm shape, and I am scheduled for a flow diversion stent procedure at the end of this month.

This has been quite a shocking diagnosis, as I had associated the vision changes to my migraine disorder, and otherwise have no symptoms, risk factors, or family history. I am only a couple years out of graduate school and am now starting to get established in my career and school-free adult life, so facing potential lifelong monitoring and possible future surgery for the second aneurysm is very daunting to me. I am very very close to my mom, and my diagnosis has been quite devastating for her as well.

I greatly appreciate any words of wisdom or success stories folks care to share :slight_smile:

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Welcome Sarah! I can only imagine the shock you and your Mom must be feeling right now. I always look for the positive and yours is a big one as you didn’t rupture. Trust me when I say learning about cerebral aneurysms after a rupture is not the way.

Wow grad school graduate! Well done! Not an easy task, hopefully you’ve found a job in your career choice.

Flow diverters have been around a long time it seems and over the years they’ve been improved apparently. I’ve got a different stent that sort of worked for mine, it’s as obstinate as I am so it’s not giving up and getting occluded. Most folks here get better news when they get their stent and many are able to continue their careers, so take heart in that!

Many of us receive yearly MRA’s or MRI’s to follow their aneurysms. I used to get mine every 6 months. The new machines are so fast I no longer get a nap during them. I think both together are around 15 minutes! Impresses me each time I lay down to get mine. I like to put the ear plugs in myself so they won’t fall out and I get to choose my music now which is nice. Eventually your doctor may extend the length of time between the imaging some of us only get them every 5 years, we even have a few that get them every 10 years! It’s dependent on if the aneurysm grows.

I will leave it to @FinWhaleFan to post the links to relaxation methods as that’s who created the topic! I strongly recommend learning one. Just like in school, you’ll have to practice numerous times a day for several weeks so you have it down pat and it becomes your normal way of breathing. I also suggest starting your day with a positive and if you’re feeling stressed take a moment to do some relaxation breaths and look for a positive when you’re done focusing on your breathing. There are multitudes in nature which is my personal favorite but anything works.

What day is your procedure scheduled for? Do you have any questions?

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Thank you for all this information! I feel so fortunate that I learned about the aneurysms before any rupture! My procedure is scheduled for September 23rd. I feel very confident in my surgeon so I’m not really concerned about the procedure itself. She is planning to enter through the femoral artery (they went in my wrist for the angiogram) and I am worried about walking/stairs after because I’m in a walkable city and live in a 4th floor walk-up apartment. Do you happened to have any experience with stairs after a femoral artery access?

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Sorry no, we have stairs now though. I just had a couple of steps which weren’t bad. The first six I had was all done through the femoral artery, the last one through the radial to check on the stent. You might want to reach out to see how to navigate 4 floors. It might be one step up and then bring the other up to that step, but honestly I have no idea. Hopefully other members who do have stairs and the femoral access can enlighten both of us!

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Hi @Sev and welcome to our aneurysm family. I didn’t have the opportunity to find my aneurysm before it ruptured you can read about my story in my profile. I had to have a second procedure done with a stent and more coils six months after the rupture so I have some experience with the femoral access. You are not supposed to climb stairs when you get home, a few steps might work but not four floors….. you will get advice from the hospital how much you can walk during the first days. Can you stay in your mother’s home ? Or make any other arrangements for the first few days? You also must have someone staying with you for the first 24 hours. A pair of soft pants, type jogging pants or similar is nice to wear after the procedure, it is not comfortable to wear jeans after the angiogram. Bring your sunglasses because many of us say that we were very sensitive to light, for many of us it got better after some time. How long it takes for you to recover is impossible to tell it could be some weeks, shorter or longer. But I am confident that you will recover quickly, you are young and that is your superpower. I can tell you that my rupture was 6 years ago and the additional procedure 5 1/2 years ago. I’m among the lucky ones that didn’t only survive but also had come back to my almost normal self even though it took time, it felt like forever. I’m 71 years old, just came back with my husband from a trip to Sweden, our mother-country and I have started to do strength training three times a week. My neurosurgeon said that I should be confident that everything is stable and that I could do the exercise. I hope he is right, my MRA with and without contrast is coming up in February. I hope my story helps ease the stress you and your mother is feeling. I will be cheering you from the sidelines on September 23. You can do it!

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Hi Sarah, welcome!

It must feel very shocking to find this diagnosis at such an exciting time in your life. You’re in the right place, we’re all people who truly understand how profoundly an aneurysm diagnosis shakes one’s world.

I felt similarly blindsided over a year ago after an MRA and angiogram found three aneurysms on my ICA. I now have a flow diverter securing two, and the third I watch.

I agree with Lena that you’ll want to arrange to not have to walk so many stairs after the groin entry. I’m glad you mentioned this now so you have plenty of time to make arrangements. I’ve had entry through the femoral twice now, and it does make walking on flat earth difficult for a few days. Resting and letting it heal will help you get back on your feet sooner than pushing the boundaries. Arterial closure devices are modern marvels in my opinion, so I felt obligated to give mine time to set in and do its job of keeping that big vessel closed. After you heal, you only think about it occasionally.

I slept for most of the two days following each angiogram, definitely dealt with light sensitivity and some headaches before I started feeling well enough to get out of bed, but I’ve read of other folks rebounding faster. You’ll only know how your particular body will react once you go through it, but I also feel your youth could be an asset in recovery.

Even though I was back at work a week after my stent placement, I gave myself grace to heal on whatever timeline was needed. I didn’t assign myself too much mental or physical heavy lifting, I didn’t drive for a few months, and I haven’t done international flights for a year. It felt like my brain took some time to rebuild its former processing speed, but I now feel like I’m mentally back to where I was before the surgery. A few things changed…I no longer carry stress like it’s my eternal fate (yay!), I ask other people to lift really heavy things, and my short term memory sometimes lacks (boo).

To be honest, the aneurysm finding has helped me become a healthier and more grateful person, so I consider the inconveniences and the unknowns of watching to be minor compared to this forced enlightenment. :sweat_smile:

I’ll think good thoughts for you as you move through this challenge. Stay as positive as possible, knowing some days will be hard, but you can overcome. We’re all with you.

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Hi @Sev -

Welcome to the family - admittedly it is not a family anyone wants to belong to, but there are many good and supportive people here as you have already seen!

I have a feeling this is going to be a bit of a long post, so I apologize in advance.

First things first, I want to handle my assignment (gotta’ make the boss (@Moltroub) happy :zany_face:)! I am linking below to a collection of stress reduction resources, just in case you find anything that is useful - or if you have anything to add - as we all know that keeping stress to a minimum is good for all of us!

Stress Reduction: Library of breathing videos/resources

Just for context, my brief bio is that I ruptured and had some co-morbidities (hydrocephalus and then meningitis) so healing was a longer journey for me. My treatment first consisted of coils, and then 1+ years later I had a pipeline flow diverter installed to treat the remaining aneurysm. Of course, tack on - what, maybe - three or so angiograms that I have had?? I say all this but please note I am not in the medical profession at all, I am just a patient, so I can only speak from the patient perspective.

So, I live in a 3-story condo; I have my own private entrance on the first floor, but the only living spaces are on the second and third floors so stairs are completely unavoidable. Yes, of course, I tried to honor my discharge instructions to the “t,” but some things couldn’t be helped, especially when I learned of discharge instructions when it was far too late in the game to adjust the game plan . :sad_but_relieved_face: In some ways, I am fortunate that my hospital is NOT around the corner from me, so after the angiogram, getting through post-op, getting discharged, and then the car ride home, well, probably about 6 hours or so have passed, so that is already a lot of time in the bank. I DEFINITELY would check with your team as to what their recommendations are, but I handled the stairs just as @Moltroub recommended: lead with the leg that did NOT have the wound, and then drag the leg that did (gently of course). Of course I take it very VERY slowly as you don’t want that wound to open up! @oct20 is 100% correct - sweatpants are absolutely the way to go for the week!!!

I would also well-prepare everything well in advance of the angiograms - hope for the best (radial) but expect the worst (femoral)! All that being said, I never found either one to be all that much of an issue for me, but perhaps that is because I have a PICA aneurysm. I seem to recall that a couple of days afterwards I was out casually walking around the neighborhood, I just walked at a lesser place and not as far as I normally walk.

I just pulled up my discharge instructions, and here were the most noteworthy instructions:

  • Please limit use of stairs for approximately 24 hours if possible
  • Avoid heavy lifting (greater than 5 lbs) or strenuous activities for 7 days
  • You may take leisurely walks and slowly increase your activity
  • Increase fluid intake to flush out the contrast dye, and avoid beverages that dehydrate the body (alcohol, tea, coke or coffee).

So, in the weeks beforehand, especially the first time I would pay attention to what I do during the day: when do I bend down? When do I lift things over 5 pounds? Once I would identify possible issues post-angiogram, then I would figure out a workaround. As an example, I have a fur baby over 5 lbs, so I would - of course - bend down to put the food on the floor to feed him. So, how can I do this after the angiogram (um, now HRH thinks he should always eat on the footstool, so blame that on the aneurysm!). Of course, I would also plan out where I was going to be post-angiogram and then just stay on that level and not constantly go back up and downstairs to get food, etc. Once I was settled in the first 24 hours, that’s it, I was settled.

I very much agree with @darlysaar in that I have a very different attitude towards life now and it is very much centered around gratitude. Every day is a good day now matter how horrible things are because we are blessed with the gift of life - and it truly is a gift!

Caregivers have a special place in my heart (of course) with all the fierce love and care they have for us. Just thinking about a tip I learned from a mental health professional during the pandemic is that when things feel out of control what we can do is focus on the things we can control, right (cue the breathing resources above)? If she lives in NYC with you, maybe she can help figure out to get things in order? Just a crazy idea, since obviously YOU will be busy, but since September is Awareness Month, maybe she would want to participate in an event … mainly wondering if she was able to find others in similar shoes that would help her out? Or BAF has a caregiver’s website.

So this has gone on for way too long, but I wanted to end with this. You wanted a success story, and potentially I qualify. It took me 1.5 years, but I have been able to return to work and a mostly normal life. The pipeline flow diverter occluded my aneurysm after a few months, so that is over and done, and now I just get a yearly MRA to look for anything new.

Of course, I am not the same person, but now I am better! I have a much healthier outlook on life, and a better appreciative of so much - including the medical miracles that take place in front of us every day!!

Sending you lots of good thoughts and energy! I have a feeling you’re going to be just fine!!

Fin Whale Fan :whale:

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I added one trick I saw on Reacher to the Stress Reduction list :joy:. @FinWhaleFan you always surprise me with what you’re able to bring up! I know I don’t have my discharge paperwork from any of my procedures.

@Sev can you reach out through your portal and get what the surgeon will put on discharge orders? Any of the team he/she works with should know or have access to. You might want to get a couple of books to read. Being on electronic devices for a long time strains our brains a bit, something I learned here from different members. Definitely do any heavy cleaning like vacuuming or mopping floors before the procedure.

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Or delegate to others!

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Thank you for this reply! I’ll be looking into some non-stair options to stay at for the few days after the procedure. I didn’t even think about sunglasses – added to my hospital bag list! I’m glad to hear you are traveling without issue, that is a concern I have had for myself since I have started traveling a lot the past few years. Thanks again :slight_smile:

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Thank you for sharing your experience! It’s very reassuring to hear that despite all the negatives that come with aneurysms you have been able to also find some positives to come out of it.

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Wow thank you for all this information! We are definitely thinking of finding an alternative place to stay for the first few days that has an elevator to keep things as stress-free as possible.

There’s lot of things to coordinate before the procedure – my parents actually live across the country and will fly in for the procedure and post-op period. I’ll be sure to tell them about the caregiver support you mentioned. I think my mom would find that particularly helpful. :slight_smile:

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oh that’s such a good point! I am a big reader and was planning to bring my kindle, but I’ll plan on paperbacks instead. thank you so much for mentioning that!!

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@Sev

Hi again. Regarding traveling I asked my neurosurgeon when I could travel to my former homeland to attend the wedding for my son and his fiancé. A trip that takes about 22 hours from door to door. If I remember correctly I asked him after my angiogram checkup some months after the stent was inserted. I remember he said that I could safely fly to Europe, nothing could happen in my brain, but he also mentioned that I had to be extra careful so I didn’t injure myself as I was on a high dose of anti platelet medication. I suppose that you will get the same medication before and after your procedure. Please share your conversation in our forum with your parents, I’m sure they will appreciate all the support you have received. And don’t forget the sweatpants:)

Good Luck! Everything will be fine.

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Ah there was some crazy logic as to why I saved all my medical records and bills!

I don’t recall if someone told me, or I was just generally aware from prior years, but I was cognizant enough to recall that here in the US, there is a certain threshold that if you spend >X% of your income on medical expenses in a year, you can take that as a tax credit.

Of course, that threshold is high so it is not necessarily easy to make, but I wanted to squirrel everything away so I would be able to document it. I hired a tax advisor to handle my taxes that first year so my poor brain wouldn’t have to deal with it so soon; I wanted to be sure I had anything I needed to keep it all straight. I have no doubt I am keeping too much, but at this point, it is part of the filing system, so it won’t go anywhere anytime soon, since it potentially could be part of my tax records. And, yes, I know I am old; - sometimes grabbing the paper copy 10’ away from me is quicker than going online and tracking down my e-copy in the hospital’s system from 3 years ago with all those hundreds of visits and surgeries to go through to get to the right one. :zany_face:

So glad to hear that your parents are coming in (well also not too surprised either!)! Support groups aren’t necessarily right for everyone so totally understand if it is not their thing. It was not my Mom’s thing either, and only she knows what is right for her.

Hope you are finding some fun this Labor Day weekend!

Fin Whale Fan :whale: