New member, grateful for this community

[darlysaar]

My life took a hard turn the past two months with the incidental discovery of three unruptured aneurysms on my internal carotid arteries. I’ve always been a highly driven person who enjoys staying busy and solving problems. I own a business and travel internationally for work, I “mom” two nearly-grown sons, and my husband and I make music. Life is pretty lovely.

Across the past decade, I’ve had an occasional issue with pain and inflammation in my left eye. The flare-ups usually occurred randomly a couple of times a year, but in hindsight, I note that they did occur around times of stress and high physical demand, like when I was setting up trade show booths. My ophthalmologist couldn’t see any issues within my eye, so I’ve just been taking notes and keeping in touch with my doctor when the flare-ups occur.

In late April, I was making dinner and chatting with my husband after work when my vision went very blurry for about a minute. Once my vision cleared up, everything had a vertical double, words looked like a double stack. I was a bit alarmed, so I took it easy, rested my eyes, and the double vision subsided in around three hours. I felt pressure around the back of my head for the next day. I took notes, in case the situation happened again.

The first week of May, I flew to LA for a trade show. After the first day with customers, I was back at my hotel room and the same situation happened–blurry vision followed by vertical diplopia. Since I was alone, the situation was more alarming than when it had occurred at home. I reached out to my husband to make sure we had some kind of a plan in case something catastrophic happened, and I left the hotel door unbarred. The diplopia subsided after a couple of hours of rest, but the head pressure continued through the next day.

Upon returning home, I reached out immediately to my doctor, who ordered blood tests and an MRI/MRA for June 7. The results posted on June 10 mentioned two possible aneurysms. I began my mental & emotional journey into this world, and the contemplation of life either ending or changing dramatically so early into my years.

An angiogram on June 17 clarified that I have three aneurysms, a 5.5mm and 2.7mm on my right internal carotid artery, and a 2.8mm on my left internal carotid artery. There’s also fusiform ectasia on the left posterior communicating artery. My neurosurgeon has advised that a single flow diverter can be used on the two right artery aneurysms, so I’m awaiting scheduling for that procedure. We agree to watch-and-wait on the left aneurysm.

I’ve cancelled an upcoming trip to Atlanta and cleared my international travel schedule for the rest of the year. I’m hoping to eventually resume traveling, but for now I want to focus on hearing what my body is telling me.

Reading through your posts has been very healthy. I’m seeking to manage my stress and embrace this new phase of life with optimism and creativity, but I have also felt a range of unhelpful emotions like self-blame, regret, shame and fear. I’ve felt discomfort with opening up to others about my diagnosis, how aneurysms may impact the way I live my life moving forward, and how the perception of my strength may be diminished in the eyes of others. I find it stabilizing to read the posts here, to know that so many lovely humans have been on this road long before me, and remain here to simultaneously provide and shelter in the grace of this community.

[FinWhaleFan]

Hi @darlysaar -

Speaking for myself, I am so grateful to have YOU here with us! What an amazing life you have (and will continue to have, speaking as the optimist that I am!), and I can’t wait to hear more about it … and yes, I am particularly intrigued about your newly released album! You likely have already seen the many posts we have about the healing power of music, and I have a feeling you will be able to attest to that fact.

I have no medical expertise beyond my past two-year journey into this aneurysm world, but for what it is worth, I think it is quite reasonable to have a variety of emotions, so please don’t beat yourself up about it. [I hear my mind repeat a recent meditation lesson that emotions and thoughts are neither good or bad, they just are what they are… those folks impacted my brain for sure! ]

I can readily appreciate how reticent you may be to let people know of your recent diagnosis, as I am caught up in that dilemma too. People who knew me before do not treat me the same (or it is taking them a VERY long time to do so), and those who did not, they treat me “normally”: why would I want to change that? Things always seem to work out when they should, and in the meantime you have your husband, family, friends, and all of us too.

So, yes, you are with us now, and we will do all that we can to support you, whether you have questions regarding the procedure (e.g., many of us have had a flow diverter including yours truly), or just need to vent! We are so fortunate to have you here, and I also can’t wait to hear what music you create from your experiences! (Bonus points if you make it to brain.fm! )

Sending good thoughts your way,

Fin Whale Fan

[Moltroub]

Welcome and I think it’s great you joined! Like @FinWhaleFan, I’m interested in music and its ability to help our brains. I learned about the phenomena on humans when one of my professors asked us to listen to a specific, now forgotten, classical composer prior to taking his tests. Amazingly it worked well for all of us that followed his request. I know music also works on horses as I’d play cassettes or 8-tracks when retraining ones with bad behaviors. Different horses responded to different music in different ways. After I ruptured, one of my Speech Therapists was also a music major and she taught me to use my fingers drumming a beat to keep my stutter at a minimum and help me keep my words.

Realizing you’re not here because of music but because you’ve had a scary as heck diagnosis, you’ve found the right place. I think you’re wise stopping trade shows for a bit. BH did them until I ruptured, long days on the floor trying to sell their custom products and long evenings with old and new customers. All that and have to look good doing it! Good news for BH, after 7 years, I had a stent placed and BH has been able to go back on the road again. BH actually loves visiting customers.

I’m curious as to your vertical diplopia. Have they found the cause? We often are told that aneurysms don’t “cause” things until they rupture. Although, I think the field of Neurosurgery may be changing when folks have ones that leak.

Remember to keep hydrated. Come talk to us, vent if needed, we definitely get it. Again, glad you joined!

[ModSupport]

Hey @darlysaar,
Firstly, Welcome to Ben’s Friends. Lots of great people with a ‘lived’ experience here. My name is Merl, I’m a member of the modsupport team here that helps keep the network running. I don’t have an annie, but another little nasty growing in my head which gives me all sorts of what I call ‘Fun’n’games’ (side effects) for which I’ve required a few neurosurgeries to deal with.

@darlysaar

I’m seeking to manage my stress and embrace this new phase of life with optimism and creativity…

That’s a good thing. At times my stress has managed me rather than me managing it. Developing those skills can only help because sometimes it can be a complicated journey.

@darlysaar

…but I have also felt a range of unhelpful emotions like self-blame, regret, shame and fear.

…to be honest, I’d be more concerned if you didn’t have some level of introspection. When we’re facing a ‘life altering’ diagnosis, I think it’s fairly normal to have some self-blame/regret/shame/fear. That is to say “Me Too”, like “What did I do to cause THIS?..” and the whole idea of them opening my skull scared the bejeezus out of me. I don’t think I ever did learn to manage my stress. My tongue can turn into a lethal weapon and when I get too stressed I tend to tell people exactly what I think, with no filter, and once I’ve said it, it’s too late to recover the words I’ve been told, I’m not a nice patient. When I’m in pain I can have a VERY short fuse and god help anybody who crosses me . Then I get the ‘guilts’ for being so direct…Ohh nasty.

@darlysaar

…for now I want to focus on hearing what my body is telling me.

That is a REALLY good approach to be taking. I say that because I didn’t. I tried to force my recovery to happen ‘quicker’ HINT: You can’t recover quicker than your body will allow. I pushed myself too hard, too soon, doing myself a greater injury. Don’t be doing that. My body was telling me “Lay down or I’ll put you down” I ignored those signs and ended up back on the neurosurgeon’s table.

We’re always here if you need.
Merl from the Modsupport Team

[Maggsbuck]

Mine was an incidental finding diagnosed also. It was hard to hear from my left side. ENT sent me to have an MRI to check the labyrinths in my inner ears. There were clear of tumors. However a large aneurysm in my carotid was discovered in December of 2019, days before Christmas. I was sent to a group of Neurologists in Georgetown University Hospital. An appointment was made 5 days later after the discovery. Angiogram was schedule in Mid-January of 2020. Surgery was performed through Intervention Radiology in Mid-February of 2020, just before Pandemic.
In a way it was a blessing because In was able to rest and nap as much as my body requested it. Music was an important part during recovery. Netflix was another companion along with FaceTime with friends and relatives. Hang in there recovery it’s long, physical and mental activity is amost

[Moltroub]

There’s always a positive in everything, if we look and you sure found lots of positives!

[darlysaar]

@FinWhaleFan, I appreciate your optimism and really enjoy your posts. I find it reassuring that you and many others have endured some pretty scary seasons, yet remain hopeful and uplift others so readily. I’ve found myself going to your posts around the forum during times I’m feeling a bit overwhelmed. Your positive energy helps me guide my mind away from more pessimistic pathways.

@Moltroub, thank you for the welcome! I see that you’ve been a member here for over 10 years, and you’ve contributed so much helpful information and calming reassurance. I read about your rupture experience, and that sounds like the nightmare I’ve been fearing. I’m glad you made it through. I agree with you that music holds such power for healing our brains and helping us adapt. My oldest son struggled for years with connecting to his peers, as he often fixated on random topics his friends didn’t find interesting. When he started playing music, particularly bass and guitar, his world changed. Not only did he gain a fantastic focal point for his seemingly boundless ADHD brain energy that also helped him learn pace and nuance, but as a bonus he found acceptance and appreciation from people of all ages when he performed. I believe that his enthusiasm inspired many kids in his age group to start playing, too. A few days ago he was beside me on the couch, picking through some old Delta blues standards with a gentleness I could have never guessed he’d have back when he was a wiggly headstrong wild child.

I’m curious as to your vertical diplopia. Have they found the cause?

My neurosurgeon noted that I have aneurysms on the left and right superior hypophyseal artery (SHA), so the near proximity to and possible compression of the optic nerve and optic chiasm could cause the visual issues. I’m so glad I had these signs that led to a diagnosis, as I read that the location may not always give notable warning signs before hemorrhage. I have a wonderful doctor who listens and explores. I am so glad she didn’t dismiss the visual symptoms.

@ModSupport Merl, thank you for the welcome and the reminder to truly take things gently in recovery. I’ve always been an overdriven person with a lot of strength and drive, so I recognize my own tendencies in what you report. I’m so sorry you had to go through difficult times. I appreciate your honesty about how this can be a complicated journey calling for a lot of personal grace, and about how forthright you can be in delivering your feelings, sometimes to the discomfort of others. I imagine that’s a fine line I’ll learn to live around, too.

@Maggsbuck, thank you for the support and the reminder to stay strong through the recovery. I told a friend that the incidental discovery and diagnosis feels like winning the biggest lottery (that no one would ever intentionally play). I agree that having your recovery coincide with a global shut-down was somewhat serendipitous, but did it make you more nervous about contracting COVID? What a trying time that must have been for you. I’m glad you’re here.

My stent procedure is scheduled for this Thursday, July 3, so the next few days I’m focusing on remaining positive and grateful instead of fearing the remote chance of something going wrong in surgery. The more investigation I do with Dr. Google, the more I marvel at how intricate and amazing the human body really is, and feel grateful that the medical community has amassed so much knowledge through the past couple of centuries. I hope to be able to report only good things about my procedure, and if I have any questions or concerns during recovery, I’ll reach out to you all.

[Moltroub]

Thank you so much for sharing the story about your awesome son! I’m guessing he’s probably really intelligent and just wants to know a lot about whatever popped in his mind, I get that. The fact that you found a way for him to learn to focus is brilliant, kudos to you both!

[Shinykai]

I hope your procedure and recovery go smoothly @darlysaar - I’ll be thinking of you this week!

[darlysaar]

Thank you so much, @Shinykai! I’m feeling pretty hopeful. I appreciate all the good thoughts and the lovely sunshiney flower.

[elisediver]

Hi darlysaar,
Sending you best wishes on your upcoming procedure. It is so scary to find out you have an aneurysm so it’s great you reached out to this community. I had a craniotoym surgery for my unruptured aneurysm last year and the entire experience of diagnosis, dealing with insurance, finding the right neurosurgeon and solution is a hard journey and can be extremely difficult and very emotional. So have lots of grace with yourself and focus on doing things that support you - I started therapy during my journey so I could sort through all the feelings and people’s reactions. My surgery has been successful so far, I have my 1 year angiogram in October so hopefully that’s all good. The recovery is hard but again, do your best to surround yourself with all the types of support you need. I hope you can take off work for at least a month or two as I found more time helpful, I needed that time to heal and process and what I’d been through. I was back to work after 3 months and now 8 months later I’m working like normal, I’m exercising and have been cleared to go scuba diving so good things do happen after situations like these. I know it’s hard sometimes to focus on the positive vs how daunting surgeries can be.

You found it before it ruptured so that is a big WIN! Thankfully this community is here to help us all go through this experience and know you are not alone.

[Moltroub]

It’s awesome to read you’re cleared to scuba dive!

[darlysaar]

Thank you so much, @elisediver. I’m also happy to hear that you’re cleared to dive!

I’m noting your suggestion about returning to work. At the moment, if all goes well, I hope to be back in office at least for a few hours daily by July 15. This experience and friends like you are teaching me that it’s fine to make plans, but I have to remain flexible and aware, and willing to change the plans if my body is asking for more time. Your reminder came during these last two days before surgery, when I’m trying to knock down a to-do list that seems to keep growing. In all honestly, I’m actually looking forward to having a reason to do nothing except focus on feeling better.

I appreciate your advice to seek additional support, too. Somewhat serendipitously, I started therapy a few months ago, so I’ve had the support of a good counselor through each phase of this discovery. My response to some difficult past experiences and the words of some pretty unkind folks has been to develop an innate fear of being “seen” or saying anything that smacks of vulnerability in the public sphere, to judge myself so harshly and overthink every public-facing word I say. I’m working on not being invisible, on opening up in the belief that there are more good people who will embrace my particular synthesis of life than angry people who live to criticize and demean. This amazing group is helping greatly with practicing open, vulnerable communication with kind strangers.

I also marvel at the timing of my decision to sell my car back in February and start riding the city bus. After years of being locked into my routine and kept safely away from the masses in my car, I started experiencing such an interesting panorama of my local community from within those very masses. Many people ride the bus as a choice, and many ride because they have no other choice. I observed people with altered abilities moving through their life with confidence, not hiding or lamenting what they lacked. I feel that I needed to see this example of daily courage at this very point in time, to help me see the strength of so many people who choose to live their lives out loud, imperfection and all. I’ve had to practice patience in trading my 12-minute commute for an hour-long bus ride, and I feel that better serves my new watch-and-wait life.

I hope to be able to make at least an all-clear post after my procedure tomorrow, but I recognize that it’s more likely that I’ll just be out of touch for a few days. I appreciate you all for making this diagnosis less scary, for reminding me of all the important things I need to be a healthy and mindful person long-term. I’ll be hydrating and eating protein today!

[Moltroub]

You’re probably on the table right now as I type. But I wanted to tell you how awesome you are in being able to take life by the horns and go with it! I don’t really know you, but I’m really proud of you and I bet your therapist and family are as well!

[darlysaar]

Thank you so much, @Moltroub. I read your post just before going in and it really touched my heart and gave me that last boost of strength I needed. Thank you to everyone for the support. My procedure yesterday went well, and I had a pretty restful night, able to fall asleep between all the neuro checks. I have had a slight headache and some bright spots since coming out of anesthesia, but I’m drinking water, occasionally taking a Tylenol, and all else seems fine. My neurosurgeon should be checking in this morning, and hopefully by noon I’ll be checked out and heading home to gently recover. Feeling very fortunate that Kaiser Permanente has taken good care of me, it’s been less than a month between the MRI to diagnostic angio to surgery.

[Moltroub]

This was great news to wake up to with my cup of tea! You’re home! Now all you have to do is find a good movie, a good book and as @FinWhaleFan reminded us recently, a nice coloring book and pencils! Well all that, and following your surgeon’s rules! We were just talking to the young man who is mowing our yard this year yesterday and asked about my rules. He’s having a procedure on his heart again. I’ve been given more since I saw the doc about my wrist. I told him I have so many now I just forget the ones that I don’t want to follow😂

[darlysaar]

I’m now five days into recovery from my embolization procedure, and I’m happy to report that on the whole, I’m feeling good.

On July 3, my neurosurgeon installed a single Stryker Surpass Elite 5 x 20 mm flow diverter to treat both an unruptured right superior hypophyseal artery aneurysm measuring 5.5 x 4.5 x 3.8 mm and an unruptured cavernous ICA aneurysm measuring 2.7 x 1.7 x 2.0 mm.

I’ve been hydrating, resting and eating well, and thankfully my body feels pretty strong. I’m still often short of breath from the blood thinner (Brilinta), but I hope to get out for a walk in the neighborhood this evening so I can evaluate my endurance. I’ve experienced consistent headaches in my right temple after the procedure that are manageable with a couple Tylenol. The onset of the headache is pretty identifiable now, so as soon as I feel the little ice pick in my temple, I take the pills and I’m okay within a half hour. I’ve been able to make it through most of the past two days without end-to-end pain relief.

I do have a persisting visual presentation. The best way I can describe it is that I now have a neon line art drawing across the lower half of my visual field. I told my husband it looks like the profile of a boar hog in the foreground and a little cartoon golf green with a pin in the background, so we joke about my golfing boar hog now. The lines seem to change in intensity as my eyes adjust to light and depth, but thankfully do not completely obscure vision. I can see through them or imagine my way around them. I presume they may fade with time; we’ll see.

I am curious about how to describe my procedure. In my insurance records, the procedure is listed as neurosurgery or surgery. I’ve had multiple friends and family insist that what I had wasn’t actually surgery since I didn’t have my skull opened (thank goodness). It doesn’t truly matter what people call the procedure, but I have found myself hesitating to describe the treatment as surgery.

If all goes to plan, I’ll pop into my office for a few hours on Friday (my birthday!), and return to work on Monday of next week. I’m thinking to set a timer to remind me to take breaks throughout the day, and I’ll likely take along my blood pressure machine for periodic checks. I’ll have a follow-up angiogram in six months to check the treated aneurysms and measure the untreated one, then an annual MRI if all is well.

Thank you all again for your holding my hand through this past month. I appreciate you greatly.

[Moltroub]

That’s wonderful news! I believe the your golfing boar hog friend will go away eventually, I had beautiful filigree Irish lace that I’d get fixated on. Was told not to do that…

BH and I were just discussing the difference between surgery and procedure. Came to the conclusion that endovascular is surgery since they cut you open run the catheter up and around your heart to get into your brain. They do look at both sides even if they think there’s not any on the other side. We decided surgery consists of cutting someone open, we don’t have size requirements. If the insurance company determines it’s surgery, go with them.

But because I’m me, I found this Procedure vs. Surgery: Uses, Benefits, & Side Effects. We are correct and they are not, yay us!

Happy early birthday!

[FinWhaleFan]

That is so funny, as I had been mulling on this questiion overnight…well, in addition to the time previously spent thinking about it.

I finally thought of our doctors, and if they are neurosurgeons (or associated with the neurosurgery department as my neuroradiologist is), well, that should answer the question. Just because modern medicine is so miraculous that much can be done endovascularly, does that mean it is not a surgery? No, it just means we are blessed to live in this age of scientific wonders. Until the day and age comes when we can swallow a pill to treat aneurysms, I am going to say it is surgery. Perhaps I am biased, but when my Dad had stents put in after his heart attack, was that not heart surgery? No one seemed to question that, even though he had a radial entry. So, why would cerebral stents not still be brain surgery??

Or put it this way: a couple of weeks ago was my annie-versary, and my present to myself was a new t-shirt, “Today is my brain surgery anniversary!” I know I can get a lot of mileage out of it, and I intend to wear it on both my endovascular surgery days, as well as my VP shunt surgery days. Thank goodness for @Moltroub putting some evidence behind my mullings though. Thank you!!

WAY more importantly, Happy Birthday @darlysaar!! I am so pleased that your surgery (!! ) went so well, and that you are easing back into your life and figuring out how to manage you, even with the golfing boar hog! (Not quite Caddyshack, but that groundhog comes to mind!) You are going to be just fine, and my guess is that you will be off the Brilinta very soon!

I hope you have a great birthday, and that you truly get a chance to celebrate our most beautiful gift: being alive!

Fin Whale Fan

[DickD]

It is very easy to look upon endovascular surgery as trivial in some way or less impactful but my own personal experience of a catheter embolization procedure was that it was anything but trivial. I have an AVM, which is different from an aneurysm but which presents similar risks and so I had the AVM wholly glued up in order to resolve it, blocking arterial pressure blood from getting into one of my main veins. It was such an immediate change in the plumbing in my brain that it took me the best part of two years to get used to the new flows.

So if anyone asks me, I had brain surgery. Technically I had neurovascular surgery (but that’s probably usually what anyone means by brain surgery anyway) endovascularly and it is a simple miracle of modern medicine that it can be done in such a way. I look upon it as an extreme version of keyhole surgery!